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By Betty Leigh Hello, my name is Betty Leigh and I am thrilled to tell you that I am a 3-time breast cancer survivor. I am here to tell you about my non-diagnosis and what happened after that. In 1995, I was living in upstate New York as a single mom with my children, Michael and Katie. I worked at a local radio station as a disc jockey and also as an actress doing TV commercials. I remember one morning, lifting my left arm to brush my hair in the bathroom mirror and seeing a grayish lump at my underarm . I didn’t think much of it at that time. But after a few weeks I called the local gynecologist. The local gynecologist examined it and told me that it was nothing to worry about and that I should think about taking estrogen, as “I wasn’t getting any younger.” I left happy to hear the “good” news and didn’t think of it again, until… About a month or so later, it started to hurt and looked more pronounced . I went back to the doctor, who spoke to me like a silly child. “Now, what did I tell you last time?” he crooned.  “OK OK OK,” I thought, and left. I went back a third time and he scolded me for being overly dramatic. I left his office and went to the emergency room of the local hospital  and asked for an X-ray. They refused because I didn’t have a doctor’s note/request. I said strongly that I think I have breast cancer and asked, “Do you want to have turned me away?”  They said, “Um, well, no…” and they proceeded to set me up immediately for a mammogram. After the mammogram, I waited and waited in a small room and finally the man who had refused me came in and said words I will never forget: “It is more than suspicious.” Yes, I DID have breast cancer. I made some calls, including one to—of all people—my ex-husband. I asked him for help and mostly recommendations. It was a Friday, so I quickly called and made an appointment with Dr. Daniel Roses, a breast cancer surgeon in New York City. On Monday, I met with Dr. Roses, along with my ex-husband. I was examined, had a biopsy, and Dr. Roses told me that I needed to have a lumpectomy ASAP. Can it be? Well, yes it can, and the lumpectomy was scheduled for Friday of that week. For my surgery I stayed a week in the hospital, the children stayed at their school principal’s home with his wonderful wife, Laurie, and I stayed with my ex-husband. After the lumpectomy in 1995, all was well until 2013, when I had a mammogram and ductal carcinoma was diagnosed… OH NO. In those days, the procedure was a lot simpler. I had a lumpectomy at 7:00 a.m., went to a room to relax, and went home at 12:00 p.m.  All was well again… until 2014, when I had another mammogram and was again diagnosed with breast cancer. It was the same kind as the year before, ductal carcinoma. Once again, I had a 7:00 a.m. lumpectomy. My daughter, of course, was there with me. I was relaxing after the surgery and I got a call on my phone from my agent that I had an audition with Sophia Coppola for a Gap commercial one block from the hospital. “What?!” said my daughter. “Are you serious, Mom?”  Up comes Dr. Roses. “Hello, how are you doing, Betty?” he asked.  “Well, I am fine, I think all went well,” I said, “but Katie, my daughter, is mad at me.”  “Why is she mad at you?” asked Dr. Roses. “Because I have an audition around the corner in an hour ,” I answered. “What?” said Dr. Roses. “Betty, that IS crazy, you should go home and relax.”  “Well, I just got a call from my agent and I have an audition with Sofia Coppola for a Gap commercial.” Dr. Roses looks at me for a moment and then turns to my daughter. “Katie, your mom has to go to the audition .”  I DID go to the audition… AND I GOT THE JOB!  Check out the commercial here: https://www.youtube.com/watch?v=uu7qI4NKjrY After each of my three diagnoses, my mind was free to face the future however I wanted to . Those thoughts and feelings were completely up to me. If I could choose, my choice was and continues to be positivity. With ourselves, family, and friends we can do the same. There is a beautiful Buddhist thought I want to share with you: “Are we planting anger and worry, or are we planting being grateful and kind?” Read More: 9 Early Warning Signs of Breast Cancer You Shouldn’t Ignore Why a Second Opinion Matters for Breast Cancer 10 Years of Survivorship: Cancer Is My Unexpected Teacher How Cancer Trauma Can Impact Your Life – and Ways to Move Forward The Psychological Impact of Breast Cancer: Strategies for Coping On the Podcast: Breast Cancer Conversations My Mom and I Were Diagnosed With Breast Cancer In The Same Year Share your story, poetry, or art: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By Teresa Nolan Feeling stressed Got a massage I lay on my stomach A stone, it seemed In my breast And I knew I knew I went home Didn’t think about it For a bit Until I did And then, I felt it In the shower I knew I knew That was May June, see the gyno July, get a mammo August, whad’ya know? All the while Flashing various docs My broken boobs I knew My mother had it When I was small She survived She was scared She was scarred Physically Emotionally And while she waited For the shoe to drop It never did She used to take me with her To the shop for her special bras So I knew About the differences About the frustrations About the indignities From a young age I knew Self-exams Dense Breasts Ultrasounds Breast Clips Biopsies Genetics I knew I knew and I was still surprised But not really Because I always knew And then suddenly I knew nothing A whole new language Her 2 Negative ANC PALB2 Red Devil?! And every day more to learn More to know In the midst of the unknowable Now the things I know are new I thought I knew But what did I know It’s a lot This extra job of not dying It wears you out All the hoping All the keeping strong This I certainly know But I also know this: I survived I am strong Often frustrated Sometimes scared Definitely scarred But hopeful And fighting And here. Share your poetry: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By Gail May Why are you so sad? Is what the Dr. said, you are alive and thriving, not 100% but better than being dead Well that’s easy for you to say was my reply, I’m grateful I survived, I’m thankful I didn’t die But the struggle is real and the emotions I feel are sometimes hard to accept, the surgery was necessary and something I don’t regret  Yet everyone says you made it!! Hallelujah put a smile on your face I wonder how many would say the same if it were them in my place. I look in the mirror at a giant scar where my breast used to be As I hold back tears I hear the words ringing in my ears, you should be happy you’re cancer free. Free from a disease that took a major part of me, and left me feeling less than the woman I used to be. It will get better, the Dr. said with a smile You will adjust to the changes although it might take a while In the meantime you’re healing well Your margins are clear so cheer up, smile, wipe away those tears. As I left her office I said thank you Dr. for all you’ve done, the cancer may have been removed but the real journey has just begun. Share your poetry: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By Marie McGuire My heart opens, blossoming just like a flower Receiving unconditional love extending this love reaching out to other hearts and as these hearts vibrate strong, healthy, energizing We connect with smiling faces as our hearts continue to share Share your poetry: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By Jill Rackham My breast cancer diagnosis has given me lots to be thankful for. Despite my diagnosis leaving me feeling so emotionally raw. Thank you to my husband for being alongside me throughout. You were there to pick me up when I wanted to scream and shout. Thank you to my children for being thoughtful and helping me so much. You have been so amazing and both have such a caring touch. Thank you to my mum as I know how hard it is seeing your child go through troubles of any kind. Your support has been appreciated and mums like you are a rare find. Thank you to my family and friends who have taken the time to check in with me. Spending time with you means so much and your kind messages are always lovely to see. Thank you to my surgeon for your skill in taking my tumours away. Knowing that cancer had been removed enabled me to breathe a little easier from that day. Thank you to my oncologist for discussing with me in detail my treatment plan. Your words help reassure me that we are doing all we can. Thank you to my oncology nurses for always looking after me so well. Your kindness and compassion have helped me so much, I can tell. Thank you to all other hospital staff who have been involved in my care. You have made this journey more bearable and helped lessen the scare. Thank you! Share your poetry: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By Elizabeth Brodbine Ghoniem I was diagnosed with breast cancer a couple of years ago; I was sixty-six. Was I surprised? Not really; I’d already had two other breast cancer scares. “Third time’s a charm” didn’t apply. Or perhaps it did. One oncologist called me “lucky.”  They discovered the cancer early. It had not spread . Only surgery followed by radiation would be necessary—no chemotherapy. There would be medication to take for five years, but I could worry about that later.  It started with my annual mammogram. The radiologist found suspicious activity in my left breast. Unlike the calcifications she was already watching, these new masses had jagged edges (pleomorphic). The next step would be a stereotactic biopsy. Since I had had two biopsies before, I thought it was no big deal. But the radiologist kept looking at me suspiciously, repeatedly asking if I had any questions. That should have been my first clue. Later, I decided to look it up online. Only a man could have designed this process. Yes, it is exacting, but imagine you are lying face down on a specialized table with your breast hanging through a hole, your head to one side, your arms fixed over your head. You’re told to hold still for 20 to 30 minutes, while your breast is squeezed like a lemon until the last drop of juice. Then the doctor inserts a needle to suction a sample, and inserts clips to mark the location of the area in question.  It was the worst mammogram I’ve ever had.  Apparently, patients used to sit in a chair for this, but many passed out, so now they opt for a table. Improvement? Really?  I searched online and found one vendor’s website showcasing the device. The patient and doctor were smiling; they appeared  happy (before the procedure?). The process was described as “comfortable patient access.” That should have been my second clue.  After all, the company sells to doctors, not to patients like me.  Don’t get me wrong. I am grateful for advancements in technology that allow doctors to discover cancers much earlier and save lives—mine included. But perhaps the same efforts that our tech billionaires put into launching rockets to Mars could be redirected to fund development of better, more patient-friendly diagnostic machines, instead of this medieval torture device. Maybe then, fewer women would avoid mammograms, and we’d have fewer late-stage diagnoses. The call came while I was on Zoom with my writing group. I muted the meeting and left the room. A nurse had the unfortunate task of delivering the results: cancer. My hands shook. Even though I had prepared myself for the diagnosis, it was still shocking. Fortunately, my husband was home. He stood beside me as the nurse rattled off: DCIS, grade 3, ER+.  The ductal carcinoma in situ  (DCIS) diagnosis meant that it had not spread outside the ducts in the breast. It was grade 3—meaning how different it was from other cells within the grading system of 1-3, with three being the worst, and was estrogen-receptor positive (ER+), indicating that estrogen was feeding the cancer. We didn’t know enough to probe  beyond “what’s next?”  We met with the surgeon the next day, who explained more. The plan: breast-conserving surgery—aka lumpectomy—followed by radiation, and then hormone reduction therapy. One in eight women will be diagnosed with breast cancer . Because of that awful statistic, I was able to reach out to friends and family who had breast cancer, including my younger sister. Everyone assured me that it would be okay. After all, everyone was still alive 7 and 10 years after the diagnoses and treatments. Even my doctor friends, including a retired breast surgeon, were quick to reassure. They had caught the cancer early. I was “lucky.” Surgery was routine. The only annoyance. No exercise for three weeks. My excellent surgeon insisted upon that multiple times. Please don’t get the impression that I’m an exercise nut because I’m not. But this was summer, and I vowed to get back into shape. Kayaking? Not allowed. Swimming? Off the table. Even walking longer than a couple of miles was discouraged. My husband, normally a drill sergeant, insisted on joining me for any walks. Instead of “walk faster, you’re too slow” I got “too far, turn around.”  I may have sneaked in a few extra steps. Just don’t tell him. Thanks to a ruling from President Obama’s administration, the medical profession must release test results as they become available. Helpful? Yes. Scary? Absolutely.  My phone pinged with my surgical pathology report . Of course, I had to look: 2mm margins, DCIS with solid and cribriform types (intermediate grade) with necrosis. Two pages of results that I did not understand. I searched online and found an article by the American Breast Cancer Foundation and tried to decode my fate while I waited for the doctor’s call. Thanks to my care team, the doctor’s office called shortly after. Another surgery was not needed; they had gotten all the cancer. The margins were clear, at least 2mm. I guess I missed the pre-surgery discussion of potentially more than one surgery. At least it was irrelevant. But what about the other results: necrosis, tubular, a decrease from grade 3 to grade 2? Did this mean I could skip radiation?  Two days later my husband and I met with the radiation oncologist. During the exam, the doctor remarked on how my anatomy was ideally suited for radiation; she liked the separation of my breasts. Should I be flattered?  Radiation, like chemotherapy, is meant to kill any remaining cancer cells to reduce the risk of migration and recurrence. But nothing comes without risks. All I could think of was Marie Curie, the first woman to win the Nobel Prize for her breakthrough research on the chemistry of radioactive substances. She had died from too much radiation exposure.  I wasn’t Marie Curie, and this wasn’t the early 1900s. But when you are told that radiation will be beamed into your body to kill cells, wouldn’t you also worry?  The doctor understood my hesitancy. A new test, DCISionRT, could be done to determine my individualized risk for recurrence and benefit from radiation. “Tests are good,” my husband uttered. Unlike our first call, he had come prepared with questions. He did not earn his PhD and become a professor at MIT without his fair share of research. “Just one more question,” he said and asked a slew more, which the doctor patiently answered.   The results from this new test would take two weeks. In the meantime, I was stuck in limbo, unable to plan my future. The doctor understood and agreed to schedule our next appointment as if we were moving forward with radiation while we awaited the results. This was prophetic because, sure enough, I was at high risk for recurrence, and radiation would reduce that risk by more than half.  To prepare for radiation, you first undergo mapping. This process is conducted using a CT/simulator, which scans and maps the breast area to be targeted and the areas to be blocked (your heart and lungs). Tattoos are applied in strategic locations; these are small freckle-sized markings that the radiation technicians will use to align your body during radiation therapy. I have four of these: one on my left side, one on my right side, one in the middle of my front, and the last in the middle of my back, all aligned with my breasts. This involves a pin prick into the skin. It was uncomfortable but certainly tolerable. However, I will forgo getting any decorative tattoos, as I can only imagine how this multiplied by 10,000 pin pricks would feel. I leave that to others. After the mapping session, the team—the radiation oncologist, physicist, dosimetrist, radiation technicians, and nurses—meets to discuss the optimal dose and transmission of the radiating beams, as well as your position during treatment, whether you will be prone or supine.  I don’t know why I struggle with the terms “prone” and “supine.” I know that one means lying with your face down and the other with your face up, but I get tripped up sometimes. It’s like when someone says to lift your left arm and you lift your right one instead. I was interested in the etymology of the terms. It beats searching for something about cancer.  “Prone” originates from Latin pronus , meaning to bend forward, lean forward, bend over—your face not up. “Supine” originates from the Latin supinus , meaning lying on the back, bending backward, obviously face up. Yet I’m not alone in my confusion. James Joyce in Ulysses writes:  “ He lies prone , his face to the sky, his hat rolling to the wall.” And, I wonder if Flannery O’Connor was equally confused or just wanted to be ambiguous when she wrote in one of her letters: “I too have been prone  on my couch this week, a victim of the common cold.” Wouldn’t you visualize someone lying on their back, face up?  A week after the mapping, on a Friday, I had my pre-treatment session, which included the team’s decision on my treatment. I would have eighteen radiation sessions, Monday through Friday, with weekends off. For sixteen sessions I would be prone, my left breast hanging down through an opening in the table. It sounds awful but really it’s not that bad. Unlike the stereotactic biopsy, your breast hangs free—no compression. For the last two sessions, I would be supine for a “cone down,” the radiation field narrowed for an extra boost, not necessarily a higher dose.  The radiation technicians—always two, sometimes three—introduced me to the linear accelerator. You can undoubtedly research this machine, which I did, but simplistically it is the device that beams the radiation on you. The technicians had me lie prone on the x-ray table, aligning my body to the exact position recommended for treatment, and took additional pictures. All of this was recorded, and the machine was programmed to know exactly where to radiate its beams. Radiation treatments would begin the following Monday. The doctors and staff thoroughly explained the process, discussing in detail the short- and long-term side effects; none were serious, except for those rare instances that occur only once in a million. I wouldn’t go there. The sessions would take no more than fifteen minutes from start to finish. I asked if it hurt. They said it wouldn’t, but I’ve been given that same answer before and I was skeptical. I thought I had a high level of tolerance for pain until experiencing excruciating pain during a dental visit. The dentist, now my former  dentist, said Novocaine was unnecessary as she yanked off a temporary cap to replace it with a permanent one. “It will only take twenty minutes,” she said as she continued to yank away, and I gripped tighter and tighter to the side of the chair. Twenty minutes turned into two hours. Finally, she asked if the cap fit okay. I lied. No way was I going to let her continue and no way was I going back. So yes, I was skeptical when the radiation oncologist assured me it would not hurt. Day 1 came the following Monday. I was petrified, and I didn’t sleep the night before. It also didn’t help that my appointment was during rush hour, it was raining intermittently, and it was the first full week of school. Traffic couldn’t have been worse. Waze kept redirecting me and I eventually gave up and ignored their instructions. My husband was in a separate car on the phone, trying to calm me, assuring me that they would wait for me if I were late. Assuring, another word that was becoming all too familiar. Its meaning: to make sure or certain. At least that was true; I made it to the lab with two minutes to spare.  I was greeted warmly by the receptionist, nurse, and the two radiation technicians whom I had met the previous Friday. I changed into a lovely blue waist-length gown and looked back at my husband, who seemed more anxious than me as the technicians led me away. Tossing off my sandals and the gown, I climbed onto the table, lay face down (prone) and started breathing deeply. The technicians guided my body in place, smoothing down my shoulder blades, asking me to “relax my shoulders.” Okay, really! I am lying half-naked face down on a table in a freezing room, where there is a big machine hovering above me, and I am supposed to relax. Yes, they kindly gave me warm blankets for my lower body and arms, but I was still cold, and my claustrophobia was getting the better of me—more deep breathing. After the technicians assure me I am in the exact position, the machine is lowered and positioned inches away from my body. The technicians leave the room.  Moments later, I hear noises, some clicks and then a louder, longer, screeching sound. I try yogic breathing. In for ten and out for ten, but it feels more like the beginning of hyperventilation. The machine rotates across my body. More clicking and again longer, screeching sounds. Then it’s over. The doctor was right: no pain. I learned the screeching sounds were the radiation beams doing their job, one side and then the other. Fifteen minutes later, I am dressed and on my way home. And just in case you were wondering, I am not radioactive. Note to self: next time wear socks. Day 2. After battling with my husband over when to leave—he’s known for barely making flights—I win, and we leave about fifteen minutes earlier, which makes a huge difference. Same routine. I jump on the table, this time wearing socks. Warm blankets, of course, and the machine moves around me. There’s no pain, but later that day, I felt some twitching in my breasts. I visualized red, androgynous figures, swords and shields raised, battling the beams as they came in, struggling to survive and proliferate.  Day 3. My husband and I arrive early. Treatment is delayed. The server is down. Did the warriors win? We meet with the radiation oncologist. My husband raises the concern about the twitching in my breasts. She assures us that the twitching is likely a remnant of surgery and could last days, months, or even years. But what if she is wrong, and there are truly cancerous warriors inside me, battling to survive as I fought to rid myself of them?  Later that day, I received a call: the server was up. Could I return for my treatment? The warriors better be prepared because the radiation beam was coming for them again. Treatments went smoothly after that, but my mind still came up with all sorts of conspiracy theories as I lay there being beamed down upon. Besides the little red warriors—I still believe they do exist—I lay there wondering what would happen if one of the technicians moved the beam to my eyes, blinding me or my brain and wiping out all my memories. Of course, none of this happened, but my strongest recommendation is not to binge-watch four seasons of Stranger Things  while undergoing treatments. Radiation is over. I can return to my routine—whatever that even means now. Cancer changes you. Even though my prognosis is excellent – 97-99% survival rate, I realize that life will end at some point. I still hesitate before making plans too far in advance, and I find myself analyzing every ache and wondering. However, I also buy that ridiculously expensive dress I’ve been coveting in the store or that perfectly matching necklace. I don’t wait for “the special occasion.” Life itself is the occasion. Read More: Understanding the Different Stages of Breast Cancer: What You Need to Know Ductal Carcinoma in Situ (“Stage Zero” Breast Cancer): What You Need To Know Empowering Yourself: Questions to Ask Your Doctor After a Breast Cancer Diagnosis Understanding Your Pathology Report: A Comprehensive Step-By-Step Guide On the Podcast: Breast Cancer Conversations Understanding Nurse Navigation: Support and Resources for Cancer Patients Share your story, poetry, or art: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

The holidays are fast approaching and my mantra lately has been “2018 is going to be my year”. I have already starting outlining all of the New Year resolutions and goals I have for 2018 from vacations, career goals, to getting back into running and yoga shape, the list goes on! However, amidst the excitement of a new year with new beginnings and opportunities, it has also been hard to realize all of the hardship my body has gone through from treatments to surgery, radiation, and experimenting with various hormonal therapies. I thought the hard part was behind me, but accepting and understanding this next phase, this next phase that will most likely consist of 10 years of hormonal therapies to ensure breast cancer does not recur, is equally as hard, and I wasn’t expecting it to be! Are we ever prepared for what comes next? I think it all hit me when I was mid-air, on an airplane and heading south to visit my family for Thanksgiving. These feelings always come at the most inopportune time don’t they? I was doing what everyone usually does around Thanksgiving: -My bags were packed, -I was visiting family, -The holiday cheer was in the air, and 30,000 feet somewhere over New York, it hit me, “I had cancer”, wait no, “I survived cancer!” As if somehow, I forgot what a tumultuous year I had endured; my hair was growing back, my energy level was increasing, I was back to work etc. I was living the “normal life”. But out of the blue, mid-air, I started to panic. My mind started to race and all I could focus on was the millions of “what if” questions: “What if flying is going to cause me to get lymphedema ” as I glanced down on my stylish compression sleeve from lymphadivas . “What if the cancer comes back ”? I have been having a lot of joint pain lately. Has it spread to my bones? “What if the tingling feeling in my toes spreads and the neuropathy travels up my legs?” Maybe I should loosen my shoe laces. What is going on? That’s it, I thought to myself, I’m going to be that person on the plane that presses the flight attendant call button requesting that we land in DC, I needed to get off the metal missile jetting through the air at colossal speeds. A minute felt like an eternity and I was starting to wonder if I was ever going to make it to my final destination, in beautiful sunny Florida. This fear, anxiety, panic attack, or whatever you want to call it lasted only about 20 minutes. I’ve never experienced anything like this before nor was I expecting to! We can prepare as much as possible for the required protocol of breast cancer, the doctors can tell us all about the side effects and what we can expect from chemo, surgery and radiation, but what I was not prepared for was the mental health component associated with cancer. To some degree, it’s the underbelly of cancer we do not talk about because there is still such a stigma associated with it. I am determined to change that narrative! In fact, I think it is essential that we continue to share our stories and talk about the uncomfortable. The topics of fertility, dating, sex, identity, and mental health! This is all part of cancer care – treating the whole person, not just the disease. If the quality of life becomes too compromised, we tweak and adjust. Suffering is not an option; the only choice is living! The holidays can be stressful and bring up emotions we may or may not be prepared for. Here are a few tips for dealing with a diagnosis and the holidays : Remember, it’s ok to say “no”. Don’t overbook or over commit yourself Invite family and friends over to help with the cooking, you don’t have to do it all by yourself. Plus the social company can take your mind off of things too. Use services like PeaPod to have items delivered if it is too hard to get to the store, or ask a neighbor to pick up a few items for you if you can’t get out. Don't be afraid to ask for help. Take time during the day for yourself. Cozy up with your favorite book or magazine and enjoy reading with a cup of tea Plan a phone date with a long-distance friend Take a 15-minute walk, get outside and breathe in some fresh air Look in the mirror and tell yourself you are beautiful, smile, and think of one thing you are grateful for on this day. Happy Holidays from the SurvivingBreastCancer.org team Have a story you would like to share! Let us know! Interested in writing a Blog post? Let us know! #BreastCancer #holidays #stress #hormonaltherapy

By Leslie Ferris Yerger, founder of My Density Matters So that my story doesn’t become your story. And so MORE women with breast cancer become SURVIVORS. ‘Do the best you can until you know better, and then when you know better, do better.’ – Maya Angelou Eighteen months ago, I was diagnosed with Stage IV breast cancer after receiving that phone call that we all want to get saying, ‘All good, see you next year’ from the radiologist’s office reporting on my mammogram and ultrasound just one month prior. After learning that breast cancer was in almost every bone of body, I was beyond confused to say the least. How could this have happened? There was much to learn. What I now know, is that mammography finds less than ½ of the breast cancers present in dense breast tissue, and that those of us with dense breasts are 4-6 more times likely to get breast cancer to begin with. Having dense breasts is a higher risk factor than having a mother or sister with the disease. Around half of all women in the world have dense breast tissue; it is completely normal. Therefore, though mammography has saved many lives, it can fail those of us who actually need it the most. Many in the medical industry have known this for years. It is time, now that we know better, to do better. It is those facts, along with realizing there is a better way to detect breast cancer in dense breast tissue that is FDA approved and commercially available but not widely used, that motived me, along with personal reasons, to walk, and walk, and walk. See a description of this technology here . Molecular Breast Imaging, which finds around 400% more cancers than mammography in women with dense breast tissue, was invented at the Mayo Clinic where they are conducting a multi-site, 3000 women trial comparing MBI to 3D mammography. Preliminary results are astounding. Out of 1000 women with dense breasts tested, MBI has found 9, while 3D mammography has found 2. Wow. It is this study at the Mayo Clinic, called Density MATTERS, that I fundraised for while I walked 500 miles from France through Spain, on the Camino de Santiago. Many people ask me WHY I walked the Camino. My answer depends on how much I want to get into it, and how deep of a conversation I really want to have, or if there is time to explain. So sometimes I just say: for the adventure, to do something cool, for spiritual or religious reasons, or even to satisfy the slightly independent wild hare I have always had, or even to fundraise for a great cause. All of these answers are true actually. But my REAL WHY is much more than that. It’s about that thing nobody wants to talk about. It’s about that thing we all dance around. It’s about that 41,000 number. It’s that 41,000 women per year die of breast cancer in the US. Just imagine what the worldwide figure must be. My REAL WHY is about kids without moms, grand kids without grandmas, and widowers without wives. It’s about careers unfinished, potential not met, and dreams not realized. It’s about lives cut short, and all of the hurt that goes with that. To think this happens 41,000 times over every year is heartbreaking. To think that there is a way to detect MANY more breast cancers earlier when they are curable, that is FDA approved and commercially available, but is not available to most women is unfathomable. So this is the REAL reason WHY I walked 500 miles. So there can be more kids with moms, more grand kids with grandmas, and less widowers without wives. So careers can be finished, so potential can be met, and dreams given a chance. The next step is to finish funding the Density MATTERS multi-site study including 3,000 women so that we take one step closer to Molecular Breast Imaging becoming available to all women. This is the technological advancement we all want, need, and deserve to have. Now that we know better, this is a way to do better. Please join me is spreading the word so that women everywhere, including survivors with dense breast tissue, can begin to have access to better additional breast cancer screening methods such as Molecular Breast Imaging. So that my story doesn’t become their story And so MORE women with breast cancer become SURVIVORS Now that we know better, we MUST do better.

Silence is Golden By Jeff Neurman Last week, in this tiny corner of the world wide web (does anyone call it that anymore? And when did they dispense with the need to type “ www ”?), I wrote a public service announcement in the form of some useful cancer terminology for people to know. Since everyone either has cancer or knows someone who does (a truism I am “borrowing” from the great podcasters at Thanks Cancer! (@ThanksCancer)), it seems that people should have some idea what all the buzz is about. Of course, that was just a short blog post and the world of cancer is vast, so I will have to take pen in hand again (another anachronism) to expand upon my list in the coming days. In the meantime, however, I wanted to issue another PSA (which also deals with the other type of PSA). You see, as important as it is to be able to intelligently converse with someone who is dealing with cancer, it is of near-equal importance to understand the many things that those of us with cancer would really prefer if you did not say. Now, before anyone gets all flustered and starts accusing cancer warriors /survivors /endurers /not-dead-yetters of being hypersensitive, allow me to offer the following: First, as a reminder, we have cancer. Second, just as everyone’s cancer behaves (or misbehaves) differently, so too does everyone afflicted by it have a different level of sensitivity about what can and cannot be said. This admittedly makes it a bit tricky, since one never knows how any particular person may respond to the usage of certain words. That makes for a lot of gray, and if there is one color that people do not like it is gray (except, currently, in their living spaces where it is a fashionable paint choice). To hopefully cut down on the anxiety that those attempting to speak with someone with cancer might experience in light of this, I have tried to not only list the words and phrases that are a bit sensitive but to put some context around them. A disclaimer: No one is accusing anyone of having anything but the best of intentions, but we all know where the best of intentions can lead (assuming one believes in Hell, which I think is a personal choice). • “Trooper”: Unless the person suffering from cancer is wearing a beanie and offering to sell you some Samoas or is sporting a sash while trying to earn the Emergency Preparedness badge, I suggest staying away from this one. Facing cancer is not equivalent with being a member of the state highway patrol or somehow enlisting in a private army of one. • “You’ll Be Fine”: I know of someone who is by all accounts clairvoyant. And although she knew I would say that before I did, she is sadly not an oncologist. Sure, the intentions behind this one, like basically all of these no-no’s are well-meant, it nevertheless feels rather dismissive to someone to have all of their very real fears and anxieties and concerns whisked away by a cavalier three words (one of which is a contraction, for crying out loud) as it suggests that those fears, anxieties and concerns are not justifiable. Well, we would like to think that the utterer of this no-thinker is correct, but to do so we are going to need to see a functioning crystal ball or, at minimum, some proficiency with Tarot cards or a Ouija board. An additional word of caution on this term: The more closely-related that the speaker of it is to the intended audience the less appropriate it becomes. Just because a close family member cannot deal with the reality that her child has cancer does not give her license to say it will all be fine, particularly while in the middle of the third day of one’s second round of chemo infusions while all that infuse is trying to do is nurse some ginger ale and keep down a couple of saltines. (This is just a hypothetical, of course.) • “Don’t Worry”: I will admit that worrying is not generally a productive use of one’s time, particularly when that over which one is worrying cannot be controlled. Nonetheless, to suggest that someone who has a potentially (if not likely) life-truncating illness should not worry is just a teensy bit Pollyanna-ish. Sure, some people just accept whatever comes their way. Good for them. Many of us, however, are a bit less blasé about having cancer. If we want to worry about it, then dammit we will. • “Good Cancer”: If ever there were an oxymoron . . . . I am not an oncologist (by training), but thanks to all of my worrying (see above) I am pretty confident that any type of cancer can kill you. And although we do live in a very competitive world these days, I do not think that it is particularly productive to rank cancers based on their potential lethality. Thus, since they all suck, let’s not try to rationalize that any of them are good. They are not. That is why they are used in tandem with the term malignant, which means, if I may paraphrase, “bad.” • “Be Thankful”: It will come as a great shock to many, but one can hold two differing thoughts in the brain at the same time. Or, at least some of us can. I am thankful every day for my sons, my wife, our dog, my parents, my in-laws (but don’t let them know that) and many other things. But I was thankful for all of that before I learned I had cancer. I don’t need a potential death sentence to be thankful, just like I don’t need someone telling me to be so. • “Seize the Day”: Okay, okay. No one has actually used this exact phrase with me, but that is largely because I do not hang around people that use such lofty phrases or, similarly, read obscure books by Saul Bellow. But I know sooner or later that someone is going to say that – or something even more obnoxious like carpe diem (Latin is rarely appropriate in polite conversation) – so I just want to go on record now saying don’t do it. The preceding has been a courtesy notice for those who would otherwise potentially stick a foot in a mouth. It is only a partial list, so check back here regularly for future updates as they are foolishly uttered to me and my many friends with cancer. In the interim, if you are uncertain if what you are tempted to say is kosher or not, just keep it to yourself. You can be silently supportive without offending anyone. Practice your sympathy eyes.

Last week I shared a personal post in our newsletter where I called out the person I was before cancer, and who I have become after cancer. The post was short, but basically, even 3 years after my initial diagnosis, I am still processing and coming to terms with my body. There is an important factor here we don't often talk about and that is mental health. When you hear the words you have cancer, yes, you know you are going to go through physical hell but can we talk about the mental turmoil we experience? You all responded to the call: Andrea spent a year trying to hold on to who she was pre diagnosis and surgery. She was leaner and more muscular. Then her lungs partially collapsed and she just couldn’t. Aromatase inhibitors have changed how her body works. Having zero access to estrogen means making muscle and maintaining it is hard. All Andrea knows is that she has to move significantly EVERY day for a number of reasons: Andrea states: My body needs the exercise to help maintain my mood. Exercise is the only natural mood stabilizer and it only works if it’s consistent and over time. My joints benefit from daily movement. Finding novel ways to move is fun, whether it’s a Zumba or burlesque class. It helps maintain a steady weight especially when I do weight lifting. Meditation is also important. Even 10 minutes of mindfulness is important. She gives herself goals like training for a half marathon, or to improve her 1 mile swim time. Having goals keeps us focused on what’s important. For her its always the journey and not just the day of a race. Andrea, what's your one great piece of advice for others going through breast cancer right now? "Talk to older women about what they do for aching joints, sore muscles and how they maintain their muscle. It is a privilege to learn from them. I hope to be old too one day. Learn what nourishes your now menopausal body. It’s less and different from what it may have been before." Brookshire's first primary breast cancer diagnosis was in 2004. She felt immediate denial and called her brother to ask his doctor friend how they determine the tumor to be cancer; was it by a person in training looking in a microscope and saying, “It looks like cancer to me?” Brookshire wondered if she was in the low percentage of false positives-not realizing at the time she had 5 aunts who had had breast cancer and were of the generation that the “cancer” word was never said. Her second primary breast cancer on the opposite side was discovered in 2006 (each found on mammograms in the same month.) Having fallen from a ladder, Brookshire was still on crutches when she was called in during lunch hour to the physician’s office. A nurse opened the door to the waiting area, and seeing her on crutches exclaimed, “ Oh you have that, too! ” Brookshire felt this to be a mentally taxing manner to learn you have cancer! Brookshire silently thought, “I guess this means I really did have cancer the first time.” Sarah is also 50 lbs overweight and is trying to navigate menopause after a total hysterectomy. She has the BRCA1 gene mutation, and has stopped taking Letrozole because the side effects were horrendous. "I felt like I was a very unhealthy 90 year old woman" she exclaims. Sarah had been active, healthy and have spent her life outdoors and, like so many of us, she is always looking for the silver lining. After she stopped taking Letrozole, she was positive that she would feel better, work out and loose all the weight. Nope!! Sarah laments that the weight gain continues and she still has horrible pain in her feet and ankles. The mental health aspect is one that she has not addressed. She is strong. She has always been healthy. She has support. She's got this! Cancer treatment for her was a breeze compared to navigating life as a survivor. It’s tough. It takes effort and awareness every single day. The mental health component is one that is real despite spending most of her days ignoring that component. Sarah is a paramedic and nurse and has been involved in emergency medicine as a first responder for over 20 years. She has seen things that are oh so traumatic for so many people. She states, "My mind and body holds trauma, I understand trauma. I put my work trauma in my “work box” in my brain. I didn’t put cancer in the trauma category. OMG! Really???? How did I not know cancer is trauma??" It is turmoil, it is scary and Sarah has picked herself up and carried on. Sarah, how has being less active, less healthy, less strong, less lean affected your mental health? "I believe it takes its toll and it is easy to discount. As I carry on and learn to live as a survivor and live and thrive in life every day, I strive to learn to be more aware about my most recent trauma. Our bodies and our brains hold trauma and we pay the price in our every day lives. At this point in my life I want to understand and be aware of how cancer changed me, how it has affected my mental health and be real with that. I want to sit in the fire with that, I want to understand because after all, I had surgery and chemo and medications to get cancer out of me. I want to address the trauma so I can let go of it and let my mind and my body heal completely. It’s a journey, one that will continue to teach me throughout life with all the bumps and all the joys."

By Laura Carfang How do you speak with someone about breast cancer who hasn't gone through it? Scrolling through my own social media feed, I am surrounded by "my tribe who gets it". These people have quickly become some of my closest friends! How do you educate someone about breast cancer who doesn't have it? Having been diagnosed with breast cancer, we quickly develop proficiency in our new language. We become connoisseurs of our chemo cocktails and spokespersons for our own advocacy. On one Zoom call with a breast cancer friend, I remember within the first 5 minutes of the conversation I knew some of her most intimate fears, sexual concerns, and funeral plans. We started to laugh as she mentioned that "we go deep fast" because we can. And frankly, with a terminal illness, there isn't always the luxury of time. I am transported back to the novice stage of not knowing anything about cancer prior to my own diagnosis. The "carefree" world back then when my biggest stressor was a job, a colleague I didn't get along with when my 20 something self thought I knew-it-all, or the fact that by boyfriend accidently washed my favorite white tee with his red shorts. Recently, I've held conversations with women who were either not diagnosed but felt something, or, were newly diagnosed and wished to chat. In both situations I noticed myself spewing out way too much information in my new fluent breast cancer language and desire to help. I wanted to share the the numerous resources I have in my toolbox, i.e., the reason why breast density matters when they probably didn't even know the term, and wanting to introduce them to the women in our network who were in similar situations... but then.... stop. Take a breath. This may not actually be helping, I thought! That's when I realized that I needed to change how I spoke with someone who doesn't have cancer (or newly diagnosed) about breast cancer. My lesson learned goes something like this: Listen first Answer their questions, not the questions you want to answer Provide bite-size informational nuggets Remember the person is probably scared, don't add to the fear Offer actionable and helpful tips Remind the person that you are there for them if they want to talk more or learn more I am still learning and I would love your advice! Have you been in a situation like this when you want to over share everything, (and I mean everything) that you know about breast cancer? What did you end up doing? How did you handle the conversation? Let me know and we can come up with some tips and resource guides for our community!

By Kyla Thompson All the things I wish you were here for. All the things I wish you could tell me. All the things I struggle with because you aren’t here. October 21st, 2014. The day a part of myself went missing and will never be filled again. A part of me that was formed over thirteen years. Like every mother-daughter relationship, it is special and unique. She is the person that holds you for the first time. She is the person that will tell you the impact you will make on this life. She is the person that will teach you how to make friends. She is the first person to help you become a woman. In the span of four words, it can all come to an end. And you have to find your answers to all the questions somewhere else. That is the most challenging part - feeling like you have to find the answers all by yourself. A challenge that gets harder as the problems become more and more complex. As the problems come up, I find myself crying because all I want in that moment is my mom by my side helping me. It has been 7 years and 4 days since my mom was on this side of heaven. As I type those words, they don’t feel real. And I genuinely don’t know when it won’t be a show to me. I know that she is gone - I saw her body laying in a casket at her funeral. But I feel as if she will one day just knock on my door, and the moment I open it, she will give me a big hug. As I dial her number into my phone, knowing that she won’t pick up, but just longing that maybe she will. Longing for something. A connection. I miss her a lot. Every year the day of her passing brings about a different set of emotions. This year, as I turned twenty, it was filled with a new kind of love. As I am surrounded by my best friends, the people that love me, and whom I love, I feel more alone than I ever have before. Alone, because none of them will ever meet or know my mom, the person who had a large part in shaping who I am. The friend with whom I cry randomly is a person that will never know for whom I cry. At the same time, I love the things I see that my friends have with their moms. I want my mom to tell me my shorts are too short. I want her to tell me the stories of the stupid things she did college. I want her to tell me about her first boyfriend. I know that none of these emotions will ever go away, and the love I have for my mom will forever take different forms. My heart feels like it is being shattered into a million pieces every time that I know she isn’t coming back. That she is forever gone. It is a pain I wish upon no one.

This year continues to fly by, and it’s hard to believe that, for those of us in the US, Thanksgiving is already upon us! From there, we slide into the rush of the various winter holidays, from now through New Year’s Day. They always seem to sneak up on us. While the holidays can be a time of joy, celebration, connection, and rest, for many they can also bring a lot of stress with travel, shopping, family and social commitments. For those with a breast cancer diagnosis, this can be quite daunting. For so many of us, the holidays are a time to reconnect with family and friends that we might not see as frequently during the rest of the year. While well-meaning, friends and families may question you about your treatment, or recovery process, please recognize that this can be emotionally draining. It’s your own choice as to how much you want to talk about it (or if you want to talk about it at all) and it’s important to set (and stick to) your own boundaries about how much you wish to share. This year, our collective holiday plans might look different than just a few short years ago. Some might be ready to go all out and “make up for lost time” getting back to the traditions and gatherings we had postponed in 2020. Others might still be wary of travel or large gatherings. Again, it’s important to set your own personal boundaries, and participate in what you feel most comfortable with. There’s no need to run yourself ragged, saying yes to every holiday party invitation. It’s fine to say, “I’d love to see you, but this is such a busy time of year. Let’s meet up in January.” Below we share several articles on how to take care of yourself during the holiday season so that it really can be “the most wonderful time of the year” for you. From SurvivingBreastCancer.org The Holidays and Breast Cancer “I think it all hit me when I was mid-air, on an airplane and heading south to visit my family for Thanksgiving. These feelings always come at the most inopportune time don’t they? I was doing what everyone usually does around Thanksgiving: -My bags were packed, -I was visiting family, -The holiday cheer was in the air, and 30,000 feet somewhere over New York, it hit me, ‘I had cancer,’ wait no, ‘I survived cancer!’ As if somehow, I forgot what a tumultuous year I had endured; my hair was growing back, my energy level was increasing, I was back to work etc. I was living the ‘normal life’. But out of the blue, mid-air, I started to panic. My mind started to race and all I could focus on was the millions of ‘what if’ questions." Read More . Delicious (and Nutritious) Ideas for Thanksgiving “Thanksgiving is about the traditions we’ve formed around the table. This year, I wanted to share some new ideas for how we can celebrate the holidays with a healthy spin as we continue to fuel our bodies and steel them against breast cancer!” Read More. Navigating Breast Cancer Around the Holidays There isn’t a one-size-fits-all strategy. No matter what your situation, i.e., coming to terms with a recent diagnosis, going through treatment, or trying to adapt to a ‘new normal’, here are a few tips that may help you successfully navigate the holiday season and enjoy it! Be Kind to Yourself Accept that things may be different from your past holidays. You may not feel up to some time-honored traditions. That’s okay. Sure, it’s frustrating not to do everything you did before, but try not to beat yourself up about it. You’ve had a challenging time. Be gentle with your post-cancer self. Communicate Your Needs Your health comes first. If your breast cancer makes it difficult to plan and implement the things you usually do for the holidays, let your loved ones know. These are people who love you and want the best for you. They will be happy to fill in for you. Brace Yourself for Crazy Cancer Comments Patients and survivors can be subjected to stupid cancer comments at any time of the year. Well-meaning friends and relatives may take it to the next level during the holidays. When your distant aunt brings a gift basket of ‘cancer-curing’ treats for you, your first instinct may be to ask her why she isn’t sharing this with the experts at the Mayo Clinic. You will feel much better if you just thank her and move on (trust us on this). Read More. The Holidays and Metastatic Breast Cancer Abigail shares her experience of having MBC during the holidays. “Since 2017, when I was diagnosed with Stage IV Metastatic Breast Cancer (MBC), I’ve started to see holidays differently. I vividly recall the first celebrations following my diagnosis when I struggled with both wanting to go overboard in making memories and also wanting to simply withdraw from everything. The thought that this holiday, this birthday, this celebration, this time, this will be the last time, is always in the back of my mind. I still find myself staring at the people I love, during holidays or otherwise, trying to memorize their faces, fixing the memories in my brain so … what? So that I will remember after I die? How do you reconcile wanting to celebrate and be present with the very real fear that you will be erased, replaced, become irrelevant in the lives of those you care about the most? This anticipatory grief amongst the very real festivities of the holidays is mind boggling/numbing/blowing. ... Absent a crystal ball (and I need one of those), I think we have to make the best decisions with what we have to work with, right now. I think we have to focus on the knowns to make decisions, not make ourselves crazy with attempting to contemplate the unknowns. I think we have to be able to take responsibility for the things we can influence and just pitch the rest.” Read More. From Around The Web How to Cope with Breast Cancer During the Holidays (Breast Cancer Research Fund) “Communicate your needs and feelings. Be open about what you need and what you want the holiday experience to be. It is not helpful to hold in feelings of disappointment about a loved one’s behavior or a lack of verbal or emotional support. Instead, talk about your feelings in a non-defensive way using phrases like “I am feeling…,” “I would appreciate it if you could…,” or “When you do…, I feel….” No one can read your mind. Hoping that a spouse or friend will do something or behave a certain way because deep down you really want or need them to is a waste of precious energy. Communicating what you need is more efficient and more likely to yield the results you want. We each have our own way of coping and unique desires about how we would like to be supported. Communicating your needs is the only way friends and family will know how best to support you.” Read More. Breast Cancer, COVID, and the Holiday Season: Advice for Safely Connecting With Loved Ones (BreastCancer.org) “As you consider your holiday plans for this year, it’s important to understand your level of risk based on your age, health, and medical conditions. We know that the risk of severe illness if you get COVID-19 increases with age. The CDC also says that people who have certain medical conditions, including a current cancer diagnosis, may still be at risk for COVID-19 even if they are fully vaccinated and have received a booster. Likewise, people who are receiving breast cancer treatments that can weaken the immune system, such as chemotherapy, also may still be at risk for the virus. It is less clear whether a history of cancer increases your risk, but the CDC says it may. ... It’s a good idea to talk with your doctor about your level of COVID-19 risk and the precautions you should continue taking, especially if you plan to gather with friends and family for the holidays.” Read More. 7 Tips to Reduce Stress and Enjoy the Holidays after a Breast Cancer Diagnosis ( Healthline ) A breast cancer survivor shares her experience of being diagnosed right before the holiday season, the feeling of obligation to make sure her young son still was happy during this time, and the tips she’s learned after that first year. “I was depleted from several months of chemo and surgeries. I was receiving my last radiation treatment the day before Thanksgiving. The mental and physical exhaustion was real. I wrote out a list of all the holiday things I usually did, from shopping to hosting. Making a list helped me parse out what I really wanted to do, what I had to do, and what I considered too stressful. ... [Then] I did hardcore calendar planning. There were the things that had to happen (medical appointments and my son’s holiday recital, for example). And then there were the things I wanted to do that brought me joy. ... I took the less is more approach and simply pared down. When it came to attending events or hosting, I just did less of all of it. I realized many holiday expectations get wrapped up in the expectations of others. Those things didn’t need to be my expectations, so I let them go. I now feel good about curating a simple holiday season that fits my life as I go.” Read More. How to survive the holidays with cancer ( Fred Hutchinson Cancer Research Center ) “‘I feel pressure from others and from myself to make Christmas the best for my kids,’ said Brandie Langer, a 35-year-old breast cancer survivor and mother of three who went through mastectomy, chemo, radiation and reconstruction three years ago. ‘People ask me to do things or help out and I love helping, but there’s only so much energy to go around.’ Dr. Karen Syrjala , co-director of the Fred Hutchinson Cancer Research Center Survivorship Program, said one of the biggest challenges for cancer patients and survivors is to think in terms of how the holidays are now as opposed to how they used to be or “should be” in our minds. ‘It’s easy to get caught up in that “I’ve always done these things” mindset,’ she said. ‘But survivorship can be an opportunity to rethink your priorities and go forward rather than carrying around the baggage of expectation. It’s a chance to focus on the meaning of the holiday rather than the mass consumption.’” Read More.

It’s not exactly my fault that I’m overweight. Weight changes, more specifically, weight gain is a popular topic in any breast cancer circle. Look at online communities and discussion boards and you will see women diagnosed with breast cancer, inquiring about the side effects of breast cancer treatment, and whether that will cause weight gain . Even though some women lose weight while undergoing treatment, I want to share about breast cancer and weight gain. My Experience I am 5 years post diagnosis and have gone from a strong and healthy 140 lbs at the time of my diagnosis, to a soft and fluffy 179.4 lbs (I refuse to round up to 180). Sure, I am sitting more, working out less, and enjoying pizza and wine on Thursdays with our Thursday Night Thrivers gang, but I would suggest those are not the only factors contributing to my muffin top. In fact, a study found on PubMed and published in PLOS One claims that “patients who were non-obese at diagnosis showed weight gain, while those who were obese at diagnosis lost weight.” Yes, it is harder to work out when your body is constantly aching from tamoxifen or an aromatase inhibitor, or experiencing a slowing of your metabolism because you are thrown into premature menopause due to chemotherapy treatment or an ovarian suppressant. Whatever it may be, it starts to feel like the cards are stacked against you. I’ve certainly met many amazing women who have completely changed their lifestyles after a diagnosis and are cutting out sugars, refined and processed foods, and limiting (or cutting out completely) alcohol. I fall somewhere on the other side of this camp. That is to say, I eat relatively healthy, follow a pescatarian diet, enjoy my fair share of wine (I’m Italian, after all), and during the holidays, I certainly indulge in desserts. Does this make me a bad person? I don’t think so. Does this lifestyle equate to 40 lbs of weight gain? I don’t think that’s the case either. So What Gives? I’ve seen a few doctors lately- between my primary, oncology, and specialists for one thing or another- and they all seem to share similar sentiments: “Well, you are getting older,” they say (which no one ever wants to hear). “Being overweight can have other health implications, such as cardiovascular disease or diabetes.” (True statement, but it sounds a little threatening in my already highly vulnerable and emotional state.) “How often do you exercise?” (Gosh, it’s like going to the dentist when they ask you how often you floss! Avoiding eye contact, I mumble something, promising to do better and try harder.) After these awkward conversations where nothing seems to be going to my advantage, we start to discuss other medications that can help or prevent a whole slew of things such as: High blood pressure Lower cholesterol Support bone health Etc. So, I went home from yet another doctor’s appointment feeling like this cannot be my reality. Am I actually that unhealthy? Have I let myself go this badly? Sure, I can take some responsibility, but I wanted to do some research and spread the blame. The Research According to Foglietta et al., patients treated with aromatase inhibitors are more likely to develop hyperlipidemia, hypercholesterolemia (i.e, high cholesterol, which means your blood has too many fats in it), and hypertension (i.e., high blood pressure), all of which are recognized risk factors for heart disease. The enzyme lipoprotein lipase (LPL) is controlled by insulin. There is a relationship between estrogen and LPL and be advised that the estrogen hormone suppresses LPL. "If LPL is on a muscle cell, it pulls fat into the cell where it’s used for fuel. If LPL is on a fat cell, it pulls fat into the cell and makes it fatter. With less estrogen in the body, LPL can pull fat into fat cells and store it there.” ( Breastcancer.org ) Additionally, research published in the Journal of Clinical Oncology found that women treated with an aromatase inhibitor had about a 4.3 times higher risk of diabetes than women not treated with an aromatase inhibitor, which supports the research from Gibb et. al., in the Journal of Clinical Endocrinology & Metabolism who noted that women who received an AI for breast cancer had a greater percentage of body fat and insulin resistance, compared to those with no history of breast cancer. Ok, so I am not losing my mind! I am on an aromatase inhibitor which is causing me to increase body fat and may lead to insulin resistance, making me a candidate for diabetes, and of course without estrogen, my fat cells are only getting fatter! Sure there are steps I can take to counter the deleterious effects. In my opinion, my weight gain and potential other comorbidities, may not be entirely my fault! It’s not because I am simply getting older, or that I don’t workout enough. Conversations What we need to include in these conversations with our doctors are the following acknowledgements: Acknowledge that what I am going through is tough. Acknowledge that depleting estrogen will make it harder to lose weight. Acknowledge that many women who have been diagnosed with breast cancer gain weight and that I am not alone in this. Acknowledge that a cancer diagnosis isn’t my fault, and therefore, these side effects are not my fault either. After acknowledging that you understand how difficult this is, 1 year, 5 years, or 10+ years out from a cancer diagnosis, recognize that I am not choosing to be overweight. Offer to be my partner and support me in reducing the risk of developing long-term side effects from the current treatments I am on. We Are Not Alone In case you are one of the many women out there like me who is struggling with life after a breast cancer diagnosis, e.g., fatigue, weight gain, and subsequent other health issues that seem to just be piling on, I see you! I acknowledge that this is difficult, I know this isn’t your fault, and I know you are not alone because I am not alone either. +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ Foglietta J, Inno A, de Iuliis F, et al. Cardiotoxicity of Aromatase Inhibitors in Breast Cancer Patients. Clin Breast Cancer . 2017;17(1):11-17. doi:10.1016/j.clbc.2016.07.003 Gibb FW, Dixon JM, Clarke C, et al. Higher Insulin Resistance and Adiposity in Postmenopausal Women With Breast Cancer Treated With Aromatase Inhibitors. J Clin Endocrinol Metab . 2019;104(9):3670-3678. doi:10.1210/jc.2018-02339 Hamood R, Hamood H, Merhasin I, et al. Diabetes After Hormone Therapy in Breast Cancer Survivors: A Case-Cohort Study. J Clin Oncol . 2018;36(20):2061-2069. Koo HY, Seo YG, Cho MH, Kim MJ, Choi HC. Weight Change and Associated Factors in Long-Term Breast Cancer Survivors. PLoS One . 2016;11(7):e0159098. Published 2016 Jul 8. doi:10.1371/journal.pone.0159098 Why do some people with breast cancer gain weight? Breast Cancer.org, Accessed January 30, 2022. https://www.breastcancer.org/tips/nutrition/after_treat/lose_weight#:~:text=It's%20important%20to%20know%20that,cells%20and%20store%20it%20there .

Gloria is diagnosed with lobular breast cancer. She is originally from Trinidad and currently resides in Canada. She is a Reiki Master and believes in the power of healing, not just through the body's power of healing, but through the energy around us. Gloria shares with us her "aha" moments, the moments in which she feels enlightened and really understands the power of the universe in her own healing process and her own journey; she accomplishes this through deep reflection and introspection. She is able to go back not just years, but decades, to confront the trauma that was in her life and now enables her to live her best and fullest life. We talked about the power of therapeutic touch, the hand-heart connections, and her ultimately deciding to no longer take Letrozole and aromatase inhibitors. Laura Carfang: Your story begins many years before your actual diagnosis. Was your body trying to tell you something? Gloria: Yes. Which is very interesting. Even though I have followed up, and was the one to actually identify the so-called "pin head" of a lump, the thing with lobular breast cancer is that it tends to show smaller than it really is. So, even though I did have an ultrasound on it in December, 2018 it showed fine. My mammogram in July, 2019 showed nothing. But lobular cancer is like that, it does not present itself. Ultrasounds don't tend to pick it up because of the way it forms. It's coming from the lobes of the breast which are the milk producing glands, versus ductal which is the glands which are really the ducts that take the breast milk from the lobes to the nipple. Yeah, so only 10% as you said, Laura, I think it's just about 10% that experience lobular breast cancer. It also seems, based on the research that I've done, that it's mostly older women. I think that is because of having gone through menopause. It tends to be in a lot of cases, estrogen positive. I think that has to do with things like diet, exercise, stress and everything all coming together in our body to make that ideal suit, which it sounds like what occurs but for any kind of cancer to occur, right? Laura Carfang: That seems to be a theme I hear time and again. I don't know if it's just in North America, where we are just workaholics and we take on too much. We're overachievers, we're moms, we have careers, we're taking on co-curricular, extracurricular, volunteer opportunities, and we really fill our plate. I hear time and again, from others and myself , that I didn't realize how stressed out I was until cancer forced me to stop and literally cancel everything that I had going on for the next couple of months. Gloria: That’s so well said because it causes all of us with a breast cancer diagnosis, to stop and take an inventory of our whole life wheel; and look at all the responsibilities that we carry in that life wheel. For me, it's like so many various experiences, and I think one of the beautiful things about this healing journey through wellspring is really allowing us to look at ourselves, take the time as we go into meditation, to really ask ourselves the big question. Even just to recall things like your lifeline, and the various losses, whether that is the loss of a loved one through death, to the loss of a relationship through marriage or divorce, loss of jobs, and when you look at all those things, and then you add the complexity of the dynamic of just living, it produces an added stressor. I don't think we understand how stress affects us. The way I look at it now is I have converted my whole life to say I now occupy 1 to 10 and my to-do lists. Eating healthy is a change, exercising, going for walks in nature, breathing in the fresh air and being hugged by the forests. It's so wonderful to walk alongside a stream, and to take in the moment to observe the various animal life that present themselves to us. Some of my favorites are herons, turtles and all sorts of winged birds. Laura Carfang: I live in Boston, and I'm in this condensed city urban life, and I love going up to northern New Hampshire. We go to Maine and Vermont, to be in nature, by the ocean, by the water, the streams, the mountains. To me that is rejuvenating, and gives me the energy during the week, and then on weekends to go and escape in nature and then come back into the city dwelling and go through the hustle and bustle. It's so important to connect with our earth, to connect with nature, and whatever that is: whether it's the water, the mountains, the fresh air, to find that solitude and experience. Gloria: For me, if someone had asked back in December 2020, would I go walk by myself in nature on a daily basis, and I would say, most probably not. Now, I crave my daily walk by myself, because I use it as an opportunity to communicate with nature but also to communicate with myself. So I find [that] I love just walking and chanting in nature. Laura Carfang: Tell me a little bit about your life prior to your diagnosis. Gloria: You know, what can I say, I spent 40 odd years in the corporate world. Mostly in IT, software sales, some of the largest corporations you can think of like IBM, for instance, a very hectic fast pace. I think I just never really handled some of the losses that occurred in my life at an early age. So one that came up for me recently, as I went through this course, actually, earlier this year was the fact that I lost one of my very close brothers when I was only 15. He was just four years older than me, but very close, because I was in grade 12, actually, at the time, doing what we call, I'm originally from Trinidad in the Caribbean, we followed the British system of education. I was preparing for all levels, and I was in the science stream and my brother would be the one to explain physics, math and chemistry. Unfortunately, he was in a motorbike accident, and passed on. And I don't think I ever understood what it meant to grieve. I really don't think my peers in high school even knew that I lost a brother, because we came from different parts of the island. So I think other than maybe four or five girls from the village where I was born and grew up and attended that high school. Funny enough, it was run by Canadian missionaries. Which is so interesting, right? But not being able to really grieve that loss and then lose my mom, I think she just barely stayed alive until I was 24. So nine years later, losing her, you pretty much have to wake up and be an adult very quickly. These things affect us in many, many ways. Until we have the opportunity to take the time, I think to really look and ask, how did this affect me? And have I grieved? Did I really go through the process of grieving? Laura Carfang: It's so important to allow yourself that time, and know that there's not really an end either. I believe that grieving is a process. But I understand also, that you enjoy spending a lot of time out in nature. Gloria: We live in the country. There are lovely, lovely trails. So I was walking one day and saw this beautiful red cardinal and I didn't know what I was feeling or why. But I remember learning somewhere along my path that a red cardinal is normally like a loved one just visiting. And I got this flash of my brother. I found myself just in total tears. These are the kinds of experiences - I think until we give ourselves the time and to really be honest with, the way I look at it Laura, it's me, myself and I, nobody else. Right? All three of us call it even if you think of it as the body, mind, and spirit, because I do believe the things that affect us on the physical level have an impact on the emotional, the mental, and the spiritual. Laura Carfang: I completely agree. You've been involved in a lot of healing, personal healing, going through workshops, various modules, can you tell me about the healing process for you and how you're doing? Not just with all the losses you just described, but also with your breast cancer diagnosis? Gloria: For me as I go through my healing journey, there is one that really sticks out for me, and that is the ---. Growing up, we always heard and it's somewhere in the back of my head that says: "blood is thicker than water". For me, that has not been my personal experience with my family of origin, especially my siblings. It has now allowed me to sit with that and ask myself, what do I believe family to be? And to me, family could be anyone. It's all of humanity. That is one "aha" moment. The other is: "what would my choice be?" If something should occur with any one of my siblings. I had to really sit with that for some time, in my case, I had to let go of that disappointment, let go of the expectation, and really ask myself who am I? Laura Carfang: Which is scary. It's scary to confront who you are, and really look at yourself in the mirror and do some of that deep healing internally that will bubble up emotions that you might not be expecting to, to have bubbled up. Gloria: Absolutely. I think every day, if we spend time with ourselves just in the silence in those moments, we learn more about ourselves. Then we can make conscious informed choices as to who we want to be? In that process, I look at myself and I say, "Well, I am loving and kind and compassionate". I'm able to discern, is something from the ego, is it from source? Therefore, I can make informed choices. So my informed choice around this myth is the change to reframe or redefine what family is to me. In addition to that, to say, what is the choice I'm going to make? Should some of my siblings have, maybe a health issue or something like that. And I've decided that this is who I am. So I'll respond the same way that I always did. But with boundaries. Laura Carfang: Have you had other "aha" moments as you're experiencing the journey of healing? Gloria: Another "aha" moment for me in this process is one reframing the thinking but also choosing what are healthy boundaries for me. Case in point was 2007. I think it was when my dad had a stroke. For me, I felt the connection. This occurred at the airport in Trinidad. Both my son and I went down to Trinidad, I had just changed jobs and I decided I had about a week to spend in Trinidad, but I needed to bring my dad back up to Canada. We had to literally lift him on the airplane and the 12 years that I had with him. After that, he was in the hospital here in Canada for 46 days. Because his stroke affected his left side, he couldn't eat, he couldn't speak. He had no movement, the phenomenal health care team that was involved in his healing really made a difference, and of course, his will and his desire to live. Those are lessons for me that now I could recall and implement in my own healing. It's interesting that the last two years as you read from my story, we lost him just after his 94th birthday. But that was another experience. He literally taught me conscious dying. So I had the opportunity to spend four days with him at our local hospice. In those four days, I could see the symbolism of everything from the choice of his golf shirts that the nurses chose to put on, to his last rites, to his communication, to learning and therapeutic touch, which was something I never even heard about until hospice. Even though I was trained, and I am trained in Reiki. So even as a Reiki Master, I was never exposed to therapeutic touch. As a volunteer, she taught me what they call the hand to heart connection. When someone is in the process of dying. Laura Carfang: Can you explain to me what therapeutic touch is, and this relationship between hand and heart? Gloria: Therapeutic touch actually was developed by the head of nursing. I think it's New York State of New York State and it is evidence based research. So a lot of the nursing schools actually teach therapeutic touch. And the way I would explain therapeutic touch is recognizing that we're all energy. So I think once we can get our heads around the fact that we're all energy, whether it's animate or inanimate, there are many levels to our energetic field. So there is the physical body, there is the emotional, the mental and the spiritual. Some people are able to see or feel those fields. It's really about bringing with intention. It's going into that heart space, and holding that intention of opening an energetic portal for someone who is dealing with any kind of imbalance in the energy field, to bring balance, order and harmony back to their energy field. But it's up to the person that is the recipient, to then take that opening or that portal, and make that choice. So I think, if it's something that I have learned through this whole process, choosing wisely, and being empowered in your choice. So, that internal guidance is very much present. Laura Carfang: Almost, allowing yourself to be open to the signs and energy that the universe is giving you. As you were mentioning, like with your experience walking and seeing the red cardinal, it's easy to be looking down at your phone or looking at something else. Or, talking with a friend and not really taking in your surroundings. So it's really allowing yourself to be open to these signs. And then, interpreting them and having that connection. You know, as I'm learning about myself, energy healing, and practicing different techniques in terms of opening up chakras and just being more attuned with my own healing journey. I was pouring coffee this morning, and sometimes like when you pour the coffee, they make designs like in your coffee? And so, I got a heart! Gloria: That's funny, I knew it'd be one. Laura Carfang: Oh, my gosh, yes, that's exactly what happened. And I'm thinking, Okay, today is going to be a day where I'm going to make connections. I'm going to move forward with compassion and empathy and love. It's just one of those little things where I could have just poured the coffee and drank the cup, etc. but really taking that moment to pause and be present, as you were mentioning. Gloria: Isn't that really? It's like coming into a place of self-love and self-compassion. That has really nothing to do with anything else. I know in some cultures, death is spoken of. People have seen a dead body. I think in North America, we make it so clinical. Maybe other than the indigenous peoples of North America, most people go through life and may have never had that experience. To be able to sit with someone, as I was fortunate to sit with my dad for four days, and be like his death doula really is what it is. And to be aware, I found that because I had that opportunity. The grieving was a totally different process. Laura Carfang: Tell me about that. How would you describe the differences? Gloria: I have no unfinished business. Whatever I needed to say to him, just to be with him. So I think that is the biggest gift, not having any unfinished business with the person. Laura Carfang: That’s beautiful. I was speaking with another dear friend who was on the podcast, and she lost her husband to a terminal illness. She described those last days as probably one of the most intimate moments of their relationship and how beautiful that was to be able to experience being with your loved one as they're passing, actively passing. Gloria: You talked about earlier, the hand to heart connection. So, the volunteer at hospice taught me it's like, you rest their hand, right? So it's their heart, so it's left to left and you form that infinity symbol. When you do that, you form that infinite heart connection. And, you just hold it as long as you so choose. And so the moment she told us that, whether it was myself, or my son, or my partner sitting with my dad; we tried to do it as much as we could at different times during those four days. Gloria: I think it was a very peaceful process for him. It wasn't agitated, there wasn't any major gasping, or gnashing of teeth, or anything like that. It was just so beautiful, it's almost because I was there with him for those four days, 24 hours in his room that you go through those moments where you can see the process. So you know that hearing is most probably one of the last things to go. So you always want to whisper and let them know, it's okay. My dad was Hindu, so he practiced Hinduism. And we had his last rites the Monday before he transitioned. It's almost as though, everything in the universe has a specific rhythm, or a divine matrix, call it whatever you will, because we had that for him that Monday and he transitioned, exactly three days later. It was halfway between the time, we did his last rites from 6:30 to 7, and he transitioned 6:45, three days later. Gloria: There were things like a robin sitting on the roof, across the laneway that I could see from his room. And my Dad, though interestingly enough, this year will be 40 years since my mom has transitioned. My parents would come up from Trinidad to Canada, almost every year because all my siblings are scattered all over North America. My mom 40 years ago said no, she wasn't coming. My dad was in the Rockies. One of my brothers lives in Calgary, and he was only there for three days and had to turn around to come back to Trinidad to attend her funeral. Do you know, two years ago, after we celebrated his 94th birthday, my partner and I were in the Rockies on vacation. When he fell ill, we returned halfway from our trip. Where was I? So is this something that was meant to be? It's such a bigger question, I have no doubt in my mind that my mom was there to greet him and help him along his path. Laura Carfang: How has this healing that we're describing and talking about today, and the work that you're doing with wellsprings in terms of the courses that you're taking? How has that helped you with your own personal journey with breast cancer? Gloria: I feel like I'm truly living my best life. Every single day. When I say my best live every single day, it's a sense of contentment. It's a sense of being comfortable with me. It's a sense of relieving expectations of myself and anyone else. Laura Carfang: On social media, we see a lot of these doctored photos, everyone forcing the smile, everyone pretending that life is perfect, and that they're living their best life. They have the vacations, and you see on social media that what they want to choose to present, versus what I hear you describing is, I would say, a tune to understanding what it means to be at peace with yourself. Gloria: If I can just share with everybody on this journey to sit in silence and really discern, because we all have that ability to discern, is this something, whether it's a decision around surgery, or diet or medication to the other extreme, which could be, hands on healing. Laura Carfang: Exactly. Gloria: I think both spectrums play such an important role in our lives. It's not one path only. But it's really recognizing the whole person and really looking at ourselves on all levels; so physical, emotional, mental, and spiritual. But also looking at it from a full life wheel. Because like you and I were talking about, we are so busy, you asked me to tell you a little bit about myself, you know, being a full time professional, having kids and now having grandkids and going through a separation and divorce. That whole journey by itself requires a total introspection because it also has beliefs and limiting beliefs. Right? Because somewhere along the line depending on our religion, we may have a belief that we only have one partner and that may not necessarily be our belief. Laura Carfang: How did you decide to no longer take Letrozole, one of the aromatase inhibitors because of one of the terrible side effects? Gloria: I think for me as I go into my silence and my meditation on a daily basis, is something, because the breast cancer tumor was grade one, but stage two, so the difference is stages based on size, but grade is based on the percentage of abnormal cells within the tumor. So grade one tumor in my case specifically, was less than 10%. So, lobular breast cancer tends to be slow growing and I had gone through, very fortunate with my medical team and a fantastic surgeon who requested all the tests to ascertain prior to surgery or presenting a choice around surgery to me as to was this anywhere else in my body. So knowing that, and being an active participant and reading and researching once the lumpectomy occurred, and I got the pathology of the lumpectomy that indicated it was stage two grade one, and then estrogen progesterone 90 to 100% return. Gloria: But going back for my CT scan, I observed that there were indications of a non-alcoholic fatty liver disease so then my doctor had a huge series of blood work around the progression or non-progression of a non-alcoholic fatty liver. And so knowing what I could do to address that, because I think for me, that's my root cause of why this imbalance occurred. That combined with stress and I think emotion, probably two of the main factors. So not eating healthy, not exercising, being postmenopausal, we have to take care of ourselves in a totally different way than when we produce enough estrogen. Gloria: The thing with estrogen and being postmenopausal, which is something that I learned as well, is that it doesn't mean that we're not producing estrogen. It means that in my case, which is why I think the stress because the adrenals produce cortisol that gets converted to estrogen. If I don't address the non-alcoholic fatty liver, which takes about three years, I am thankful and grateful that it's the one organ that, if you take care of it, can rejuvenate. Having the test done that indicates there isn't any probability of it progressing to be cirrhosis of the liver, anything like that. I've chosen to change the way I eat, eat more vegetables, and do intermittent fasting. So I have, maybe 80% of my plate is vegetables and 20% protein and just exercise and just even walk and be more active. That combined with the fact that my medical oncologist did the oncotype tests in under two months. So as you most probably aware, the only time they can do an oncotype test is supposedly it's biopsy or surgery, in this case, a lumpectomy where they can look at the tumor and give some indicators as to what's the probability of recurrence. So again, in my case, understanding the onco scores, mine was just 11, which meant for them to even consider recommended chemo based on age, I would have had to have a score of over 26. Laura Carfang: Wow, that is low. Gloria: So that was one, the oncotype. The onco score also gives an indicator, because there's another part of it that shows if you went under an aromatase inhibitor for five years, how does that affect your longevity or non-recurrence of breast cancer? Again, in my case, it was taking me from the average of, I think it's now one in eight I believe. A woman can get breast cancer to one in 33. Everybody's so unique. And so my body, I listen to my body. My body was saying, just after two months of taking this little tiny, tiny pill, it's like, if it fell on the floor, you can't even find it. Laura Carfang: I'm on Letrozole, too, so I completely understand. Gloria: I had all three side effects. I went through menopause, Laura without any night sweats, hot flashes, none of those things and something triggered in my body with Letrozole that I have night sweats. I had hot flashes. The worst was the joint pain in my hands. To the point where I would get up at the wee hours of the morning. And I can't go to sleep because if I lie down, it's worse. So I would try to move and slowly it would ease but it just felt, I don't know, like I imagine how an arthritic set of fingers feel. And so after the first month, I thought "Okay Gloria try for a month", I called my medical oncologist, being the wonderful person that he is, suggested instead of taking it at night, let's try it in the morning. Laura Carfang: Which is so funny because I hear a lot of women say, I take it at night so I can sleep through the symptoms, but in your case, it was waking you up. That was that bad. Gloria: It was waking me up in my REM sleep from two to seven. That's the time when I need my baby sleep. I need to rest like a baby, right? Laura Carfang: So maybe taking it in the morning when you're active and walking and moving would mitigate some of the symptoms. Gloria: It did not, it was like clockwork, Laura. The second month was the same thing. So then he said, why don't we just stop after two months, see when the side effects are gone. And then we would try the next aromatase inhibitor. In my case, he suggested Exemestane. Because Letrozole and Anastrozole are built the same way. So try Exemestane. Well, I'm still having night sweats and hot flashes. And I have made enough changes that I walk a path of well-being. I know that where my head and my heart are connected with such intense passion, that I know I'm healthy. Laura Carfang: So you chose to forego the aromatase inhibitors, you are trusting your intuition and your body. And like you were saying, and how we discussed for this podcast, all of the amazing changes that you've made with exercise and diet, and then just being attuned to healing and Reiki and the therapeutic touch. So you, it's beautiful. I'm so excited for you. I felt like this is one of many conversations and felt like we're just scratching the surface on a number of topics that I would love to invite you back for future conversations. And then I want to ask in terms of closing words and remarks. Is there anything that you would like to highlight for our listeners? Any words of encouragement or advice to those listening? Gloria: Oh, absolutely, I think what I would suggest to all of us is to be an active participant in our well-being. The second is do our research, be informed. Third is trust; that instinct, gut instinct, internal guidance. Whether we do that through prayer, through meditation, or through walking in nature; I think they all have the same effect. And know that healing is possible. We all have all the tools, including allopathic medicine, don't get me wrong, but that combined with a holistic approach, to heal ourselves, I do believe we are multidimensional beings of light, we're just energy. As we walk that path of really understanding who we are, it's looking at the whole person. And for me to be able to go and grieve losses that occurred 40 something years ago, it's just a yes and it just tells you where these things can reside in our being-ness that we haven't uncovered through our own work, through our own introspection to look at ourselves. It's a choice because we can choose differently, we can pretend that it's not part of who we are. Or we can say, no, this is something that is really important. Get into that place of self-love and self-compassion because I really do believe once we are able to truly get to that place, that we are then being the best that we can be in the moment. Laura Carfang: I love that. Thank you, Gloria. Thank you for taking the time to share your story with us.

By Tara Coyote Life with cancer is metaphorically like dancing on a razor’s edge. The reality of one’s life possibly ending before you are ready to leave this precious planet, is a daily reality. From my own personal experience, I find it’s important to actively choose life, yet also be aware of the impermanence of death. I have been journeying with late stage breast cancer for 5.5 years. I was first diagnosed with hormone driven breast cancer in September of 2016. In the fall of 2018, it spread to my lungs, liver, bones and adrenal gland. By the winter of 2019, I was referred to hospice. I miraculously made it through the gauntlet of heavy-duty cancer treatment, paired with the support of natural medicine. To this day, I continue to have stable scans, with the tumors continuing to shrink throughout my body and clean blood tests. I am incredibly grateful to be alive! One of my coping techniques is to visualize myself continually healing. I never see myself as ‘sick’. In my mind, I am healthy, even though cancer is a daily reality that I am journeying with. Cancer is a part of my story, but it is not my entire story. This is not an easy process, but over time I have trained my mind to adapt to this way of thinking. It requires constant vigilance to keep my mind clear from these disturbing thoughts that can creep in: “How long do I have to live?” “Is the cancer growing?” “Will it come back?” “Will I die soon?” Walking on the razor's edge of my mind means: One part of me is constantly aware of my own mortality. I don’t know how much time I have left on earth and I am okay with this reality. I acknowledge and accept the reality of death. On the other side, I don’t feed into the fear of living a shorter life than I would prefer. I never look at arbitrary statistics of life expectancy with stage 4 cancer. I refuse to put myself in a limited box. I am so much more than a statistic. I believe in miracles; therefore, my body is a living miracle! It takes tremendous mental acuity to keep the mind clear once you hear the dreaded words, “You have cancer.” When I was first diagnosed in my mid-forties, I was shocked with the realization of my own mortality. I had always assumed I would live to a ripe old age. The fateful diagnosis was a gift to make me realize that my time on Earth might be much more limited than I had naively assumed. Living to the age of 50 seemed like a worthy goal. Over time, I learned to identify fear as: F - False E - Evidence A - Appearing R - Real Additionally, I did some deep introspection with my thoughts doing ‘The Work of Byron Katie’. (Byron Katie created a modality of healing through asking four questions to introspect the validity of a particular thought.) I read books and did meditations by Joe Dispenza, the best-selling author of ‘You are the Placebo’ and teacher, who teaches about the power of the mind. I learned that I could create my reality with every thought that crept through my mind. I realized that it was my decision to manifest my own personal story . The mind is so much more powerful than we give it credit for. Every moment of your existence is a choice. You can choose to be depressed because you are walking with a serious diagnosis or you can see it as a brilliant blessing to truly wake up to the precious beauty of life! It is you and you alone that decides to thrive with your ‘health opportunity’ or merely survive. It is not always an easy process, but it is tremendously empowering to embody this manner of thinking. It is quite common when receiving a serious cancer diagnosis to become impeccably aware of what food you eat. Those diagnosed with cancer often change their diet rather drastically in an effort to heal. How much effort is put into considering what thoughts are rolling through the subconscious and conscious mind? I believe that what diet you choose to feed your mind is equally as important, or possibly more important, than the diet you consume. The extraordinary life work of Dr. Emoto is documented in the New York Times Bestseller, ‘The Hidden Messages of Water’. In his book, Dr. Emoto demonstrates how water exposed to loving, benevolent, and compassionate human intention results in aesthetically pleasing physical molecular formations in the water. Water exposed to fearful and discordant human intentions results in disconnected, disfigured, and “unpleasant” physical molecular formations. He documented this through Magnetic Resonance Analysis technology and high-speed photographs. If the words and thoughts that come out of us have this effect on water crystals, it’s amazing to think of what kind of effect they have on the people and events that come into our lives. I am grateful for the cancer diagnosis that woke me up to the reality of how blessed I am to inhabit a human body. Without this brisk brush with death, I would not fully comprehend how magnificent my life is. In conclusion, I would like to remind you how very powerful and strong you are. Walking with cancer is not an easy path, but it certainly is a marvelous growth opportunity. I encourage you to explore the realm of your thoughts and see what infinite possibilities of transformation await you!

Transcribed by Agnieszka Kowalczyk Laura (addressing Martin Naley): It’s my pleasure today to be speaking with Martin Naley from Ciitizen who is the program lead for clinical trials. You have an amazing background, having worked for the Biden Cancer Institute before and having had over a decade of experience working in clinical trials. It’s an honor to be speaking with you. Thank you for taking the time to join us today. Martin Naley: It's a privilege to be here. Laura Carfang: We get questions all the time about clinical trials. What is it, how do I get involved etc. It can be quite an overwhelming process. But it doesn’t have to be. How would you define a clinical trial? What is it that the patients need to know? Martin Naley: Clinical trials are something that every patient should be thinking about at every step of their care. The nature of cancer is that it's full of big decision moments and when you hit one of those decision moments, you need to consider what the next line of therapy is to go for.You have to be thinking almost like a chess game, always two steps ahead. What are you qualified for today? What could you be qualified for tomorrow? What decisions can you make today to get yourself ready? Often people think about clinical trials as one of the last things you'd think about in your care, I like to think about them as the first thing you ought to be thinking about in your care. Trials for brand new drugs are typically ones where drugs are introduced at the end of care. But trials move forward in the care journey from the very end, to second line, to first line, all the way to the beginning of cancer, and so some of these new treatments become available at the beginning stages of your cancer. Laura Carfang: That is a really good point. I often think we have this misconception that clinical trials are only an option when all of the other options have been exhausted. But what I'm hearing is that even in the earliest stages, these are initial conversations you can start having with your oncologist and with your medical care team about what options are available and whether or not, depending on the phase and stage that you're in, if you're eligible for any of them, Am I understanding that correctly? Martin Naley: Yes. Furthermore, if you don't consider a trial today, you might actually take on another line of care that prevents you from getting that trial tomorrow. You need to be able to think about those trials as equal to standard of care options. They are often considered therapeutic options today. That's really a change in the medical mindset, it's not just research, it's an opportunity to get the best therapy. Wherever you are in your care, when you hit one of those decision moments, that is when you ought to be talking with your oncologist and exploring every opportunity. Laura Carfang: That's a really good point. Speaking of clinical trial eligibility, would being on a specific line of treatment preclude you from being eligible for other treatments later down the line? Or even the reciprocal? If you started off with a Taxol, or an AC treatment, would that preclude you from participating in a clinical trial? How do we find out that information and with whom should we be speaking to about it? Martin Naley : The information is available in a public place, it's just impossible to read it there. It's unfortunate. So there is a place called clinicaltrials.gov. All clinical trial sponsors are required to register their trials there, you can think of it like the trials phonebook. But it's written in a language that nobody understands. Even oncologists have difficulty understanding it. I often say it's written as riddles. Not only are they riddles, but they're riddles in a foreign language, not only do they lose their meaning but they even lose their humor. The challenge, I think, and this is what I've been working out for the last decade, is to bridge a language gap between what's found in a patient's medical records, the language that's spoken in, which is medical terminology, and clinical trials selection criteria, which is a completely different terminology. For instance, in your Taxol question, there are many different drugs that have their own names, Paclitaxel, Abraxane for example, that are all taxanes. A clinical trial may require that a patient has had a certain number of taxane treatments so getting that round of the next treatment of Taxol could be the thing that qualifies you for a certain trial. At the same time, if you've already had a line of taxane therapy, and a trial has a limit of patients who have only had one before, then you could actually exclude yourself from that trial by accident. That’s why it's important to have the list of trials that are either available to you now or could be available to you soon so you can start making those decisions together with your oncologist. It's almost impossible to do that research on your own. That’s the work I've been doing, essentially delivering reports, lists of trials to patients that they're eligible for today, or that they have a qualification path to get to for tomorrow. Laura Carfang: It’s getting as much information as you can upfront so that you can make informed decisions about your overall lifecycle treatment plan, not just in the immediate. I know so many of us who are listening and going through this, we are forced in a very short period of time to make these critical decisions, because the cancer is aggressive or growing, or we got diagnosed at that particular stage, that we don't have a lot of time necessarily to do the investigative research or even to know that this is an option for us. I really appreciate you bringing that to light. Martin Naley: These decision moments are “oh my gosh” moments where everything is brought into focus in that moment. Unfortunately, the research that you have to do to find your treatment options, takes a bit of time. Having the luxury of a report that gives you that information can really help in those discussions with your doctor. What you don't want to have happen is that the information gets to you after you've had the interaction with your doctor and made a decision. It's just too late. It’s important to make that request. Get your trial options report as soon as you can. Laura Carfang: Can you tell us a little bit more about your background? And what is a trial options report? Martin Naley: I'm a biologist with a business background. I worked in a company that helps to bring genomics into the world, a company called Invitrogen which became Life Technologies. Working with that company, I had a chance to develop and introduce some of the first genomic sequencing tests for cancer. I was really excited about them. I definitely got some religion about that technology. I was disappointed and impatient about the uptake of that technology in the world. So I started a company called Cure Forward, that company doesn't exist today. What it did was help patients get genomic sequencing tests and gather their health information, and then use that information to get into clinical trials. In doing so, I learned this language gap and I also learned what investigators, the people who run trials, need to see for a patient in order to make that patient qualify for the trial. I learned about how difficult that is. There are a lot of places out there where you can get superficial clinical trial matching. Sometimes those places ask you a few questions online, what your cancer type is, and so on. Some of the questions, if they wanted to go deeper, get too hard to answer for a patient. So they don't. You wind up with superficial matches. I decided to make something that would be a lot more rigorous. The risk of being almost impenetrable to most users is actually making it understandable, this being a set of matches based on every aspect of your medical records, that would qualify you for the selection criteria in clinical trials. I started doing that when I was at Cure Forward and from there, I had a chance to work with a number of different companies and organizations like the Biden Cancer Initiative to solve this problem, and unfortunately, it just hasn't been solved yet. I was really lucky to meet the founder of Ciitizen who was bold enough to take a chance on this project. What's really distinctive about this project is that I made no compromises. The world is full of compromises on clinical trial matching and an example of a compromise is you might go to an institution that has a wonderful set of trials available but it's never going to be all the trials. Even if you're at an elite academic medical center in one of the cities with the best doctors, there could be another trial down the road that you don't know about. The compromise could be the breadth of trials that's available to you, or it could be the depth of matching. I decided to take neither of those compromises. This gave me a chance to do that. What we do through this software is take all of your medical record information and compare it to all the clinical trials and deliver you a report. It's a list grouped by the degree of match strength, and the location matches to your travel preferences. Within that report you see, first the highest level matches within your location choices and then last, you see the partial matches outside of your location choices, and everything in between. And it's available now. It's my dream that I've worked on for a decade now and I got a chance to make it with a company that really cares about making this possible for patients. Laura Carfang: Congratulations! I'm just so excited to hear about all of this coming together and how you are not making any compromises to create the best tool possible to help the patient find that match and to talk about the role that technology plays in our healthcare and our health system. Martin Naley: In technology there’s an acronym that everybody uses called MVP. That's the minimum viable product. What's the least you can get away with and get on the market? Well, unfortunately, in clinical trial matching the MVP is everything. And that's just what we had to do. If you did anything else, you're delivering superficial matching and the consequence of that is a patient getting hopeful, and organizing their care around something that doesn't exist. Then the investigator has to give that patient bad news, that they're not actually eligible for the trial. It's terrible for everyone, bad for the patient and for the investigator. The world gets jaded. Then everybody stops, the doctor stops looking for trials, the patient stops looking for trials, the investigator stops taking the referrals, they just don't pick up the phone. And, and so the MVP is you have to do it perfectly to overcome this fatigue that the world feels so that people can actually believe again. That's what we're after. Laura Carfang: Before I bring our panelists on to join our conversation, one last terminology question I have for you. So as people are getting their matching based on their medical records, and they're getting this report of what trials they're eligible for, does your report also break it down based on Phase 1, Phase 2, or Phase 3 trials? And then specifically, how are those trials differentiated? Can you explain a little bit what the difference is between Phase 1, 2, and 3? Martin Naley: For the first question, the answer is yes. Within each of those four trial groupings that match strength and location, the support order is by phase descending, so you see Phase 3 trials first, down to Phase 2, and then 1. The reason that we show them all that way is phase three isn't necessarily better. I'm sure those drugs or treatments are a little bit more validated but there are advantages to phase one trials, too. There's no control arm. Some patients prefer that. They want assured access to a new thing, even if it's a less proven thing. We don't have an opinion about what's better or worse so we show them all and give people a chance. Now, I started to answer the second half of your question, which is: What is Phase 1, 2, or 3? Phase 1 trials are where drugs or other therapies are first introduced and tested for safety. In the Phase 1 trial, people are trying to figure out what's the right dose, what's the safe dose, and they start getting an initial read of efficacy. However, the trials aren't designed for efficacy testing, they're designed for safety testing. Phase 2 is more efficacy based testing. It's a broader group of patients. It's expanding that dose to more people to see how it affects cancer. When they start getting some data in Phase 2 that indicates the drug is really working they go into what's called a registration trial. Phase 3 trials are where you're trying to get the drug FDA approved. Those are much bigger trials. It's much more defined patient cohorts, and the outcomes are much more statistically measured. Laura Carfang: Thank you for defining all of that for us. We have some terminology to use and describe. One term you mentioned was the control arm. In these Phase 1 trials, if I am understanding it correctly, everyone who participates in that trial is a recipient of that drug or therapy, there is no placebo or alternative arm. Martin Naley: That is true. But I want to temper that. In Phase 3, there's no placebo. It's the best standard of care and it's really important to know that. It would be unethical to put a cancer patient on something that you know won't help them. These trials are absolutely done for patients. They want to help patients while they're advancing these new treatments. That’s why I've always believed, and I learned this from a mentor, that research medicine is the best medicine because there's a chance you're going to get the new thing but even if you don't get the new thing, you're still going to get the best care. That’s why people who go on clinical trials live longer. There's great research out there that shows one year survival and five year survival statistically improves just by getting into a trial, not necessarily even getting the new new thing. Laura Carfang: Understood. Thank you, I would like to welcome Abigail, Alyson and Sheila to the conversation. All three of you have amazing beautiful stories. All of you are living with metastatic breast cancer. You've come to it in different phases, which I think is really great. One of our Surviving Breast Cancer members started off being an ER positive breast cancer patient and then ended up with triple negative breast cancer. She was shocked to see that the subtypes can actually change and wanted to know if that was even possible. So I'm looking at you, Alyson, who I know who has had that exact experience where you were diagnosed in around 2007, with ER positive breast cancer and had a phenomenal response to all of your therapies and then 10 years later had a recurrence where it came back, metastatic and also triple negative, correct? Alyson: Yes. That is what happened to me. I was completely floored. I didn't know that could happen. It was extra upsetting at the time. It was bad enough. That's been my situation. I've been living with metastatic triple negative now for almost two and a half years. I've had my ups and downs. I think we all have. I've been on many lines of therapy. In fact, I lost count, I'd have to go back and see, probably five or six. I've been on some of the more novel therapies. I've been on the more traditional therapies. But overall, I'm doing pretty well. Luckily, nothing's in my organs. That's really lucky. I've had a hell of a time with my neck. I don't think I'll ever think of the expression “pain in the neck” in the same way. I don't think I'll ever call anyone that. That's been where my cancer likes to hang out and cause me trouble. As far as clinical trials, I personally haven't had the experience of participating in one, but, of course, I realize the importance and I've been in consideration for one. I went pretty far down the line. It was pretty much the same story Martin was alluding to where I was out to dinner with some friends and I thought I qualified and then I got the call saying I didn't. It was based on medical minutia even my doctor thought was minutia. But I'm hopeful that I will find opportunities in the future clinical trials. Laura Carfang: I can see how that would be very challenging news to receive, let alone a diagnosis and a recurrence and thinking you're so close to being a beneficiary of being on a trial to realize that there's small little things that still can disqualify us. I'm sorry that you had to go through that experience. And I will circle back with you because I know you did have experiences trying to work through collecting all of your medical records and all of your data, which is such an important piece. But I also want to welcome Sheila who is joining us today as well. It's lovely to have you on our live stream. You have a wonderful story as well. And congratulations! I want to say thank you for your service of 25 years in the Air Force. That's incredible. You discovered your lump when you were in the Air Force, correct? Sheila: Yes, I was active duty in the military back in 2009. Quick backstory: my mom died of metastatic breast cancer in 2004. Five years later, I got it. I was diagnosed metastatic. I sneezed and didn't know what it was. It was breast cancer that had spread to my liver and ribs. I've been living with it for 11 years. Laura Carfang: 11 years. That's phenomenal. Can you tell me a little bit about the symptoms? How did you know? Sheila: I thought it was like a weird feeling, it burned. I remember thinking, that's weird. I thought it was my breast. I had had my mammogram and had been getting mammograms since I was 37 because my mom died when I was 37. I sneezed again, like a week later, and I felt it again. I went to my military doctor, and I said every time I sneeze, it burns. So they did a mammogram. He brought me in, and he showed me, saying, “see that white stuff on your breast”, he said, “that's breast cancer, what you were feeling was the cancer pressing on to your ribs”. I'm 43 years old. Having fun enjoying life. Who would have thought 43 years old? I didn't even know black women could get breast cancer. You look at commercials, and back then you didn't see black women with breast cancer. The only person I knew was my mom. I had to retire from the military and take care of myself. Laura Carfang: I appreciate you sharing your story too. I'd like to turn to Abigail now to share a little bit about her story. Every time I listen to it, or read about it, I'm always discovering something new. What I want to highlight about your story is that you were diagnosed with stage two breast cancer, and went through all of the typical treatments of surgery and chemotherapy, and within a short period of time discovered that it was metastatic and had spread to your bones. The unique piece about this is that although your lymph nodes came back, no negative, it actually traveled through the blood to your bones. Abigail: It was incredibly shocking. It was actually a medical mistake, when I went for my first dose of chemo, the nurse checked the box to check my tumor markers. In the middle of chemo thinking I was stage 2 I found out that I had actually been stage 4 from the beginning and the tumors in my legs were actually substantially larger than the tumors in my breast had ever been. That was why I was limping and I was one bad step away from both of my femurs shattering. It was a huge shock and rushed into emergency surgery within days of discovering that I was stage four. Now I have lots of metal in my body, I have rods in both femurs. I’m still waiting for the superpowers from all the radiation, you know, there has to be some silver linings to all of this stuff. Laura Carfang: One question that I want to follow up on is, we've been talking a lot about clinical trials and Martin gave us a great overview of matching and how to find them in this amazing report but I wanted to ask, and this is to anyone, how did you first decide that this data piece was really important, that we needed to have a centralized place for medical records, that you could feel empowered to then send it out to places, to medical fields, and to doctors, and then that you wanted to start investigating whether you got accepted onto a clinical trial or not, that clinical trials were something on the horizon for you? Abigail: I could take the first piece. I moved in the middle of my treatment from one city to another. I physically gathered all of my records. I had four binders full of paper, and CDs. That's the way that I thought about things, and my background is, as a lawyer, so I would always have the paper and then 12 electronic backups because I was always losing things. I also knew that medical records are typically kept seven to 10 years and so having the physical pieces of paper made me feel comfortable that the records would always be accessible. It wasn't until I had done all of that work that I had found out about Ciitizen and the way that they gather the records for you, which would have saved me a whole lot of time running around trying to get information. That was a huge effort. I also came into this thinking that clinical trials were for people who are about to die. To me, it was a Hail Mary last ditch effort. When I came to my current medical oncologist I was about six months into my diagnosis, I signed up to participate in my first clinical trial, which was a method of genomic testing. It was testing on my original tumor to find out if there were actionable mutations, mutations that had a treatment specific for them. As a result of that trial, which was conducted at Memorial Sloan Kettering, I found out I had the PIK3CA Mutation, which has led to my second treatment, which I'm still on, which is Piqray. I'm thankful I learned early on that clinical trials are not just about taking medicine. I'm sure Sheila will talk about her experiences of actually being on an experimental treatment that has worked wonders for her. But clinical trials are also about learning, just learning about how tests are run, or about a different technique. I'm actually in a clinical trial right now, that is looking at your blood work and circulating tumor DNA and the idea is to be able to give doctors a leading indicator, and they think they're going to be able to tell doctors a year to 18 months in advance, when cancer is progressing or mutating such that you're going to have a progression. So my experiences with clinical trials have all been about taking my data, taking my blood, taking my tissue, testing it and then giving me information about it, which is, I think it definitely was something that I had not thought of, in terms of participating in a clinical trial. That's been a great experience. I'm going to get on my soapbox for a second as a lawyer, I'm always super interested in informed consent. I'm always super interested in the documents that people have to read. I'm always super interested in the Justice piece of the people who really need the trials getting access to the trials, but I have a nonprofit, and through my nonprofit, I recruit lawyers. One of the things I want to tell everybody who is listening, if you are getting into a clinical trial, and you don't understand the type of paperwork, if you don't understand the consent, I will find a lawyer in your area to help you interpret that document. Everybody needs to understand 100% what they're signing. I'm not saying that that means that anybody's doing anything nefarious, it's just that these documents are often written in language that us lawyers use, and it's a whole jargon all on its own, just like medical jargon. Don't make the documents, or not understanding what they are, be a barrier to participating in a trial, because I'm happy to help with that. Laura Carfang: Wonderful, thank you. That was Connect4 legal services. To segue from there, Sheila, what was your experience with clinical trials? When did you know that you wanted to get involved? Sheila: I had a fourth progression, on my sixth line of treatment. My doctor said it was progressing again. I said, well, what do you want to do? So she said, well, you can go back to a standard one that's already an approved treatment, or you can try this clinical trial. And I said sure. My platform is clinical trials and getting black women and men to participate in clinical trials. Considering the medical mysteries, our history, and our cultural difference, I said sure. I've been on it since July of 2018. Like Abigail was saying about informed consent, you have to make it something where I can understand it or, even in a black community, make it so the transportation or daycare is taken care of, make it easier for people to participate in clinical trials. When I was on Twitter, I saw somebody say, well I have to pay for parking. Why did I have to pay for parking? This should all be human centered to the point where you make it easier for people to participate in clinical trials. Don't make it harder. It's already hard enough. It wasn't a last resort. I just decided, if I'm gonna walk the walk, I’m going to talk the talk. That's when I decided to participate. As far as medical records, in the military you get a stack of medical records when you retire. You don’t know what to do with all of it. Luckily, for my hospital, I joined Ciitizen . I was talking to Sophia and Ricky Farley, and said, why don't you try to get people involved in Ciitizen , so that all medical records are in one location. If I want to see my scan, I can see my scan. If I want to see anything from 10 years ago, I want to be able to just go on a computer and see it. I don't have to need all this paperwork. I think it's all about education. What people don't understand, too, is from the Tuskegee Study, the IRB was formed. There are so many guidelines now and protocols with clinical trials, we're protected from things like syphilis, and the Tuskegee Study. Laura Carfang: Exactly. I'm going to turn to Martin now, and I'm going to bring him back on to join us in this conversation, because this is a great segue to actually linger a little bit more on exactly what you were saying, Sheila, about informed consent, some of the ethics around clinical trials, as well as the protections that the institutional review board is going under and all of that. So Martin, can you explain a little bit about what those best practices are to ensure the health and safety of people participating? Martin Naley: I just want to pick up on something that was mentioned a moment ago about minority participation in clinical trials. I found some numbers just recently, I was working on a project and came across these. African Americans make up 12% of the US population, but only 5% of the clinical trial population, which is definitely an underrepresentation. Then you look at Hispanic population, and that's 16% of the United States, but only 1% of clinical trial participants. That tells you there's a lot of room for improvement. Overall, about 20 to 40% of patients could qualify for clinical trials, that's the estimate out there based on academic experts. I've actually found trials for just about every person who's come through our service, so it's probably higher than that 20 to 40%, but only 8% participate today.Then you look among ethnic subpopulations, and white people just have a much better chance of participating in research than anybody else. Any solution that comes to bear for clinical trial matching has to address that inequity, or it's not a solution. That's our point of view. Just wanted to get that out there. Regarding protections, I think a lot of the protections exist today because of what was mentioned here about Tuskegee, and so on. There were poor protections in the past, and exploitation of different groups of people to do research and that is unconscionable. That’s why these protections do exist. Every clinical trial is overseen by an Investigational Review Board, which is part of a medical institution. Every institution has one. Also, there are investigational review boards that span multiple institutions so that community hospitals can also offer research without having to develop their own IRBs. These IRBs meet and talk about a protocol and they won't allow that protocol to happen at an institution unless safeguards are in place. Those safeguards are described in an informed consent document that's given to the patient. Like Abigail said, those can be really dense. It’s important to get help and to read through them. I do believe they're written with the best intention to protect the patients who participate in research. Abigail: I would agree with that. As a lawyer, I've drafted lots of documents where I understood what they said, but the lay person would not. I wasn't casting aspersions on anybody's intentions, they're just that us lawyers do speak in a different language. It’s important to know that, and it's important to know as a patient walking into it that nobody's trying to hide the ball. Nobody's trying to confuse you or make it more difficult. It's legitimately that everyday words that people use, oftentimes have a different definition in the legal context. Also, everyday words often have a different definition in the medical context. It legitimately is you're just walking into somebody else's world in terms of language. Sheila: We had this discussion on Twitter the other day, where it said, Are you looking at me as a subject or a patient? Do I look like a subject? No, I don't look like a subject. I look like a patient. Don't call me a subject. That's another thing, a cultural difference. experimental drug. We're already thinking that we’re being used as guinea pigs. We’re patients and patients matter. Alyson: Right, I wanted to jump in and talk about my experience when I came very close to being in a clinical trial. I mentioned earlier that I thought I was going to enroll, but I didn't. I wanted to sort of recount what it was like to go and learn about the trial. I went to the office of the trial coordinator and there were a couple of nurses who focused on trials who were walking me through the study design. It was very complicated. I have a PhD, not in science but in literature, and I've worked in the pharmaceutical industry for 15 years and I had difficulty understanding what they were talking about with the study design. My husband looked at me, a Yale graduate, and he whispered in my ear, What the hell is a wild type? There's a long way to go with trials, even with just writing trials in a way that makes sense to people. I could have easily run the other way. There were no handouts about what the trial was or about what the terminology meant. They gave me a copy of the study design that the scientists used. Frankly, it was appalling, the way information is communicated to patients. Something I really feel passionate about is bringing that to light for a few reasons. One, if you're in that situation, and you're considering a trial, and you have no idea what they're talking about, just realize you're not alone, as most patients don't have any idea. You guys need to do a better job of taking things down and explaining them. It’s a big piece of why people don’t enroll. People don’t know what a wild type is. Martin Naley: Right, and nowhere in your medical record will it ever say that you're wild type. It would be the absence of information, you just wouldn't have a mutation in that gene reported. That's what makes it impossible. These patients and trials are desperate for each other and yet, they're just ships in the night. The trials are out there, saying, come on down if you're a wild type, and nobody knows. Laura Carfang: It seems like we could do a lot to bring the groups together, which is what we're working on doing. It's all of these constituents. It may even be part of the IRB process or the recruitment process of meeting with the patients and saying, does this actually make sense? It’s saying, I'm the primary investigator, but what questions do you have that we could have this handout or this FAQ sheet that we give to people in advance and really start moving the needle that way? We talked a lot about your experience collecting the data piece, and then participating in the long arduous process of becoming clinical trials. Martin, it sounds like what you're doing at Ciitizen is really trying to alleviate some of these pain points. Can you talk a little bit about what your process is like for collecting the medical records and then matching and what can a patient expect when they reach out to Ciitizen to get more information and get involved? Martin Naley: It's all designed to be a 60 second process. It's all online. You go to the Ciitizen website and sign up , you can do it on your phone. You take a picture of your driver's license, and then Ciitizen uses your signup form with your ID to go to every place that you've had medical care, and make that request on your behalf. It's your legal right to get your data. Ciitizen helps you exercise that right, which is afforded to you, under HIPAA. A lot of people talk about HIPAA as kind of a blocker in healthcare. It's actually not intended to do that at all. The P in HIPAA is not privacy, its portability. The idea is to make your data available to you where you want it. We go ahead and make those requests. Institutions typically deliver those medical records to us in giant PDF documents, just like what you talked about Sheila, that 1000 page binder of your medical records. I've worked with a lot of companies who have tried to argue that data should be more interoperable and try to fight the system. One of the things we realized at Ciitizen is that it wasn't worth it. You're not going to change the system everywhere. There's a lot of incumbency, in health care. We said, fine, give us those 1000 page PDFs, we'll learn how to read them. What we did was make a machine learning process. Machine learning is a fancy language, but basically what it means is you start a machine, and the machine is wrong all the time. You start feeding documents into the machine, and you just start telling it that it's wrong. Every now and then the machine makes a lucky guess and you verify that that lucky guess was right. Now the machine has learned, when I see this, I want to get that from the document. What Ciitizen has done is made it possible to take that 1000 page PDF, and pull out the information that's important for your cancer care. The machine has gotten to a very high accuracy point where it's almost always right. There's a small team of clinical reviewers who look at the machine outputs. They do the verifying to make sure it keeps on learning, and then also tell the machine when it's getting something wrong. Those things get published as patient cancer cards. As a patient, you start out with the 60 second onboarding process. A couple weeks later, sometimes a couple of days later, sometimes within minutes, you get a digested cancer card of your cancer story from the beginning from all the places that you've had care. From there, you can start using it in different ways. One of the ways is to raise your hand and say I want to try. Then things come my way and we use an algorithm to figure out which trials might be suitable for you. The patient is completely hands off. That's all there is to it. Abigail: And it's free, and doesn't cost the patient anything. If you as a patient are getting your records, the different hospitals are allowed to charge you, they're allowed to charge you a search fee. They're allowed to charge you, per page, even if they're emailing you the records. Here in Florida, they are allowed to charge $1 per page up to a certain amount, and then 25 cents a page thereafter. If you go through Ciitizen , you don't have to pay any of those things. Laura Carfang: I know we're talking about metastatic breast cancer, but can early stages also participate? Or do they have to wait until they're done with active treatment? Martin Naley: I think it's really important to mention that because we can always do an update. If you finish a round of therapy or have a new progression or a new status update, it's a lot easier to do a refresh than it is to start from the beginning in building those cancer cards. We encourage people to sign up, to get everything in place, and then doing updates is not a big deal. The other thing that's important to mention is we're talking about informed consent, and there's this notion at Ciitizen of a patient's full informed consent, meaning that a patient is receiving their records into Ciitizen, but every use of those records is authorized by the patient. If you're signing up to look for clinical trials, you agree to participate in that process. If your information is going to a second opinion provider, you're authorizing that. Everything that happens with your data is your choice. That's really important. Alyson: I felt very comfortable with the whole process. I didn't initially answer the question of how I got involved with it. To be honest, I wasn't really looking for anything. I just met these guys, because they really got involved in the breast cancer community. I realized that, wow, this would be great if I needed a second opinion. At one point, I actually did need a second opinion and it was very stressful to gather all the records. I could barely get the records in time for the appointment. It would have been great to have some of what I initially didn't. Now I have a full report on it. I have to admit I haven’t really read yet, because I'm not really at the point yet where I need a trial but it was really comforting to see the sheer volume. You always feel like oh, I don't have very many but I was so overwhelmed by both the number and the range of types of trials. It made me feel really good to know you have so many options. Martin Naley: Thank you. It's important to note also that some people do see 50 or more clinical trials in their report. Just for context, we have over 700 that are fully described in our database right now. We're working hard to cut those down for people. Out of those 50 or 100, we always try hard to get to the five or so that are within your location preferences and that are full match.The first few times I delivered those reports to people and they saw 50 they freaked out and I needed to figure out how to give them some markers in the road. We don't recommend anything. I'd say we're not medical professionals. It's not something we would do, but we want to make sure that there are landmarks to help people navigate these reports. Laura Carfang: As we wrap up today's conversation, I would love to go around and ask each of you what piece of advice would you leave our listeners with today with regards to clinical trials? Alyson: I would say definitely sign up for Ciitizen , you have nothing to lose. It’s good planning for the future. You might want to have a second opinion or you might want to enroll in a trial. Why not? It's free. The other thing I'll say is for people with triple negative breast cancer, which is what I have, there's still so much to be discovered. It's really a challenging cancer to treat but there's so much out there in clinical trials. Life extends possibilities exist out there. I think it's important for everybody, but especially if you have triple negative. Please pay attention. Abigail: I think, other than signing up for Ciitizen, because you know, that's the obvious takeaway in terms of having everything in one place, I think the big piece of advice that I would give to everybody even starting out is to have this conversation with your doctor regularly. Even if you're doing amazing on whatever line of treatment that you're on, asking your doctor, is there anything else that I could participate in, such as the genomic trial that I was able to participate in that led me to my second line of treatment. Continually talk about that, not just with your doctor, but with your friends, I think that for those of us in the MBC community, we are talking to each other regularly, and knowing other people's experiences or being able to participate in a trial, at say, an institution that might not be local to you, will only result in being able to hear about different options, at least to continue the conversation. Sheila: Like Abigail was saying, just continue to have open conversations with your doctor about clinical trials, about your health. This is your body. This is you. There's no right or wrong question. Continue to ask questions and ask your doctor about Ciitizen. What do you think? Have you heard of IT? What do you think about clinical trial matching ? I tell my doctor everything. Just continue to have those open conversations. This is your body. This is your life. This is important. We want to live. We want trials. This is top notch research. This is excellent research that, like I said, I've been on for two and a half years, and it's working well. I want that to work for everybody. Laura Carfang: Martin, I feel like we just scratched the surface, one hour deep dive into clinical trials, how to get involved with Ciitizen, and where to go from here. I'll definitely be picking your brain later so we can continue the conversation. If there's one piece of advice, or anything you want to stress to leave our listeners with today, what would it be? Martin Naley: A diagnosis of cancer is so terrifying and so overwhelming. One of the things that I'm so impressed about is the community that exists for patients with cancer, like people on this call today. Even people who aren't feeling well are doing everything they can to help other people because they know that they're not feeling well. I'm moved by that. When you're diagnosed with cancer, you're thrown in the deep end. Everything is really foreign to you. Even if you're an English speaker and you are well educated, in the most fortunate circumstances, it can still be overwhelming and almost impossible to understand. We're here to help. That's all. We want to make sure that when you hit those moments where you say I don't know what to do, or I don't know what this means that you know you can reach out. If you go through Ciitizens' process and you get a match report from us, you can talk to me personally, I'm here to help. Everybody who is diagnosed with cancer needs a hand sometimes. That's what we're here for. Laura Carfang: Thank you everyone for participating, sharing your stories, providing us with just a wealth of information and the tools we need to figure out how to collect and take ownership of our medical data, and also how to find these amazing matching services so we can actually advance research, not only benefiting ourselves, but future generations. I also feel like there's a lot of topics we haven't yet talked about with regards to clinical trials. This was just a crash course 101, but we will be hosting part two. I believe some of the questions that we want to address are around financial toxicity. If you're participating in a trial, if you have children, who's watching them during daycare? Who is paying for the cost to travel to and from the clinical trial site? These are some real concerns that need to be taken into consideration. As we heard earlier in the conversation today, Martin brought up some great points about the percentages of people participating in clinical trials and we need to do better, we need to be more inclusive, and create a more diverse environment in these clinical trials so that we can have the data and the knowledge and the research so that we know that when we do prescribe chemotherapies or various drugs, understanding breast cancer further, how it affects different populations. This is really important, so stay tuned for part two. If you sign up for Ciitizen, be sure to mention you hear about them from Surviving Breast Cancer (SBC). It would mean a lot to the SBC team!

Transcription produced by Nellie Maloney Have you been screened for a genetic predisposition towards breast cancer? I have. My results returned a "Variant of Unknown Significance," or VUS. What is a Variant of Unknown Significance? It’s a common question and I am pleased to have Dr. Mártir-Negrón, a medical geneticist at Miami Cancer Institute, part of Baptist Health South Florida, and trained in internal medicine, genetic diagnosis and the treatment of patients with hereditary disorders to help answer this question! Laura: Dr. Mártir-Negrón, I understand when we get our genetic testing back and read through the results, sometimes we get what is called a variant of unknown significance, also referred to as VUS. Can you explain what this means and how it impacts breast cancer treatment decisions? Dr. Mártir-Negrón: What a variant of unknown significance means is that there was a change that was found in you. But guess what, we all have changes in our genes; that’s what makes us unique and who we are. The only ones that we know will cause problems are the ones that we call pathogenic . Based on data, we know that 90% of these inconclusive changes are benign. At the lab we'll continue to review, and when there is more data, they will reach out to whoever ordered the test to inform them of any new findings. The person who ordered the test is the one that is going to receive the reclassification. Again, 90% of the cases are benign, so we call it negative until proven otherwise. In terms of treatment, we don't do anything with that information and no action is taken. But, if we give recommendations, it's not because of the inconclusive work, it’s what we're seeing in terms of one’s family history. With the inconclusive result, you're always going to have that change, you were born with that change. What it changes is our interpretation. When we see that somebody has a variant of unknown significance or is inconclusive, we look at ClinVar. ClinVar is a part of the National Institute of Health and aggregates information about genomic variation and its relationship to human health. Obviously, no names or personal data are disclosed. What we do is when we see any inconclusives, we will look at ClinVar to see what all the labs are saying. Laura Carfang: That's such a great point. ClinVar is a freely available public archive of human genetic variations and interpretations of the relationships to disease and other conditions. Abigail Johnston: Just another reason why talking to the right doctor about the right topic is so important. Dr. Mártir-Negrón is a geneticist, you don't mind saying you don't know, whereas other doctors in other specialties often avoid saying "I don't know something" and it's very important to remember that.

By Nate Kolmodin My mother was diagnosed in May 2004 and found much-needed peace in running. She said it kept her energy up, no matter how much she could exert herself, and kept her from feeling less than she was. As she was running, she told me she could feel the endorphins kicking in. Almost every time she was finished running, she would return home with a ‘runner's-high’ and feel almost euphoric. As the treatment increased from chemo to radiation, she exercised less and less, but as the treatment slowed her down, she still did her best to stay active and has been cancer-free since 2006 . I was little at the time and didn’t realize my mom had cancer until recently. I used to wait at the finish line of triathlons (with Team Survivor) for my mom to finish triumphantly, not knowing what that meant for her. Now that I know, it makes me so proud of her, knowing my mother never gave up on herself, and the rest of our family. Tips for Staying Active During Treatment Below are some tips I’ve learned about staying active during treatment: Exercise is good for everybody. It's essential for people with breast cancer to remember: Even though you may feel like nothing is in your control, you can always take care of your body in the most natural of ways- by moving it. Exercise may feel exhausting to even think about, but in practice, it can make you less likely to have your cancer come back or progress compared with those who were inactive. Any type of exercise can feel rewarding. Don’t feel the need to overwork yourself, it's important to pace yourself, and do what you and your doctor feel comfortable with. Three Types of Exercise Depending on your doctors’ advice, there are three types of exercise that can help your body and mind the most. Stretching : Stretching is important to maintain mobility. If you aren’t ready for more vigorous exercise, being as flexible as possible is key. Yoga is a perfect example of a low impact and possibly spiritually fulfilling way to move your body. Aerobic Exercise : Aerobic exercises such as running, swimming, and brisk walking are great options to burn calories and lose weight, while also building cardiovascular fitness, and lowering risk of stroke, heart attack, and diabetes. Resistance Training : Resistance training is just a fancy term to describe weight lifting and isometric exercises such as wall sits, planks, and squats. Resistance training builds muscle. Many people lose muscle, but gain fat, through cancer treatment. For those with a high fat-to-lean mass ratio, resistance training can be especially helpful. You Can Do This I understand that none of this is a walk in the park (a good form of exercise), but if you spend 30 minutes to an hour a day, at least 5 days a week, your mood will increase and you will feel more relaxed. Keep us posted on how you are doing and feeling. We love to hear from you! Please email us at info@survivingbreastcancer.org . Looking to start, with a supportive community? Check out our free, virtual movement offerings: https://www.survivingbreastcancer.org/movement-mondays

By Kristen Carter Dear Kristen, What ideas do you have for dealing with brain fog? Dear Reader, This is a topic close to my heart – or head – these days as Taxol knocks my brain offline for a couple of days a week. Brain fog can make it hard to get organized; remember things; complete tasks; find the right words when you speak; learn new things; keep track of names, dates, or your schedule; and make you feel “spacey” and easily distracted. But chemo brain isn’t the only thing that can cause us to feel foggy and unclear. Others include: Cancer itself Dehydration Various medications besides chemo Stress Lack of or poor-quality sleep Hormonal changes Poor diet – treats like candy and chips can provide an immediate brain boost, but aren’t good brain or body fuel (and sweets can lead to a sugar crash) Depression Lack of exercise Too much time on electronic devices Alcohol, which significantly impairs cognitive functioning while in your body, then can cause withdrawal symptoms like fatigue, headache, vertigo, and other brain fog symptoms. In addition, a 2021 study associated chronic alcohol use with increased inflammation in the brain and body, which can lead to increased cognitive impairments and neurological disorders. Many of these triggers are within your power to change. Here are some ideas: Hydration – drink plenty of water, electrolyte drinks, herbal/decaffeinated teas. I’ve been going for IV fluids in the days after my infusions and they help enormously as well. Get good sleep. Go to bed around the same time every day, even on weekends, if you can; wind down at least an hour before bed by shutting off your electronics, which are associated with a higher incidence of insomnia and shorter sleep duration (at the very least, set your phone so that it is in ‘night mode’ after sunset; this will reduce the amount of blue light being emitted); darken your room with blackout shades; run a sleep sound machine or app to mask street or household noises. Check the label of the OTC and prescription medications you’re taking to see if they’re contributing to your fogginess De-stress with deep breathing, yoga, Qi Gong (a personal favorite), or doing something creative Avoid caffeine after about mid-afternoon Get regular exercise – even a little walk can lift the fog Spend time in nature Call a friend – research suggests social connection improves brain function Allow your brain to be still and quiet for a bit – other research shows that even a few mindful minutes can increase concentration Eat well. Brainfoods include Omega 3 oils (the brain is about 60% fat) from fish or supplements. Foods high in antioxidants (such as blueberries, oranges, and nuts) help reduce oxidative stress in the body, which can have a positive effect on the brain and body. Certain stimulants can help as well. Tea or coffee in the morning lift many people’s energy and fog, but be warned that caffeine is dehydrating, so drink some water or other hydrating drinks as well. There are prescription medications that can help if you’re really struggling; ask your doctor about Ritalin or Adderall if you think they might be right for you. Give your brain a workout with a crossword or jigsaw puzzle, a good book, or apps like Elevate These ideas are for the temporary kind of brain fog that affects so many of us now and then. If yours feels unbearable or pervasive, talk to your doctor about it. Much love, Kristen

By Kristen Carter “I wish I’d lived a life true to myself rather than the one others expected of me.” That was the number-one regret expressed by dying people cared for by Australian palliative nurse Bronnie Ware , who worked with hospice patients for almost ten years, and described in her book The Five Regrets of the Dying . They also wish they’d kept friendships alive, worked less, and spent more time with family (cited by every male patient), allowed themselves to be happier, and had the courage to express their feelings – which undoubtedly would have helped them live their lives more authentically. There have been two pivotal experiences in my life that steered me down the road toward my own authenticity: the first was when I realized my true calling in life in my first week of Martha Beck life-coach training and knew that I wanted to help other people (and myself) become more of their “essential selves.” The second, ten years later, followed my diagnosis of metastatic breast cancer. That brought me face-to-face with who and where I was in my life compared to where I would be if I had been even more deliberate in my choices. I swore to myself that if I responded to cancer treatment, I would honor myself and my dreams with every day I had left. Fortunately, I did respond to treatment, and four and a half years later I can honestly say that I am more aligned with my top priorities than ever before. Are you? Do you feel peaceful about the way you spend your days, and who you spend time with? Do you have enough meaning and purpose in your life? Do you spend your free time doing things that fill your spirit? If not, I invite you to tune in to this regular column, in which I write about ways to live without regrets at work, in life, and in your relationships, and offer ideas for loving and caring for your precious self. Wishing you clarity and no regrets. Until next time, Kristen 💕 -- P.S. Kristen will answer any and all questions you might have about trying to live fully while dealing with breast cancer. Feel free to send your questions to her via email at kristen@survivingbreastcancer.org.

By Kristen Carter On August 20th, we held my son’s wedding at our house. After months of planning, we were finally ready. The tent was up, the tables were set, the decorations were in place, and the rehearsal had gone beautifully. We knew there was a possibility of rain in the forecast, but the first hour and a half went perfectly – the procession, the service, and the beginning of the buffet. Then the skies opened. Within about 20 minutes, there was a fast-flowing stream running through the tent from one end to the other, creating a muddy mess. Then, the lightning started and the thunder was crashing right above us, turning the tent poles into lightning rods. We quickly ushered all 60 guests into our living room (with its off-white carpet) and did the speeches there while people finished their food. It turned out to be so lovely and intimate (and much quieter than it was outside!). Then the power went out. The kids wound up cutting their cake on the kitchen table by the light of our cell phones, with the guests crowded all around. It was fabulous. No amount of bad weather or impromptu changes could dampen the spirits or the love that flowed between the bride and groom, and the guests. Here are some of the truths I realized that day, which are similar to the ones cancer has taught me: Have a Plan B in Place, in Advance We had cleared all the clutter out of the living room, just in case we wound up in there because of the weather. In a similar vein, I always like to know what my oncologist has in mind for future treatment if the medication I’m on stops working. So I advocate for myself, ask, and plan. Roll With It We can’t control the weather or what happens to us, but we can choose the story we tell about it, whether it has to do with an event or our health. Maintain Perspective It could almost always be worse. Keep a Sense of Humor If possible, laugh at the circumstances and be grateful for whatever you can. It’s almost always possible. Rely on Professionals Whenever possible, hire good people – caterers who don’t mind cleaning up in the rain, and a good doctor you can rely on to do their absolute best for you. Rely on Friends Everybody pitched in to bring wedding things indoors and to clean up the day after. They lightened the load, just like my friends who have been my chemo buddies. It can be a crazy world, with crazy circumstances, but with the right attitude and the right people, it can all be okay, too. -- P.S. Kristen will answer any and all questions you might have about trying to live fully while dealing with breast cancer. Feel free to send your questions to her via email at kristen@survivingbreastcancer.org.

By William Laferriere At Survivingbreastcancer.org and Después de un Diagnóstico , we strive to break down the many barriers faced by the Latino community vis-à-vis healthcare in the US and throughout the Americas. In fact, our outreach in the last several months has been remarkable, with over 20,000 Spanish translations of our website www.survivingbreastcancer.org . We have a strategy (below) but need help, and therefore are making a direct appeal to you. Many complex and interconnected factors contribute to racial disparities in breast cancer development and outcomes. These factors include genetics, lifestyle, access to healthcare, social determinants of health, and limited research conducted in people of color. At Survivingbreastcancer.org , we are creating a Hispanic Outreach Program throughout the Americas looking to break down cultural, socioeconomic, and language barriers, and improve access to breast cancer screenings. This last is an essential factor in improving breast cancer outcomes among Hispanic women. The following are several strategies that we are suggesting to increase breast cancer awareness and screenings: Cultural context-specific breast cancer awareness campaigns Enhancing the availability of breast cancer-specific education and support programs Developing partnerships with community organizations to increase breast cancer screening access in local areas Improving breast cancer screening guidelines to better reflect the needs of Hispanic women In order to improve access to care for Hispanic women, we must work together to create a culturally sensitive healthcare environment where these women feel comfortable talking about their health needs and accessing screening services. Community-based programs designed to provide educational resources about breast cancer in Spanish can be an effective way of reaching this population. Additionally, healthcare providers must be aware of the cultural dynamics at play in order to provide culturally sensitive care. We must first understand the underlying cultural issues that can prevent Hispanic individuals from seeking medical help for breast cancer. Many Hispanic women have difficulty discussing their bodies and health with others, especially if they are unfamiliar or uncomfortable with the healthcare system. Additionally, language and cultural barriers can make it difficult to access proper healthcare services. This means that many Hispanic women are not receiving the necessary information about breast cancer risk factors and screenings that could save their lives. Note: 19% of the population in the continental US and Hawaii identify themselves as Hispanic or Latino. In addition, more than 3 million Hispanic Americans reside in Puerto Rico, a US territory. Cancer is the leading cause of death among Hispanic people, accounting for 20% of deaths. While Hispanic men and women are less likely than non-Hispanic white individuals to be diagnosed with the most common cancers (lung, colorectal, breast, and prostate), they have a higher risk for cancers associated with infectious agents, such as the liver, stomach, and cervix. However, there is much variation in the cancer burden among Hispanic subgroups, with Mexican Americans having the highest cancer prevalence. Please stay tuned for more developments at Survivingbreastcancer.org and Después de un Diagnóstico , and share our programs and resources in English and Spanish with your community. Learn more: Después de un Diagnóstico Historias inspiradoras Calendario de eventos SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By Kristen Carter Valentine’s Day can be a wonderful holiday if you’re in a relationship with someone you care for (and who cares for you). But whether you’re in such a partnership or not, there is one person you should love above all others: yourself. “What??” you might ask. “What about my soulmate? What about my children? My parents?” To which I would answer: The longest relationship you will have in your life is the one you have with yourself. The more fully you love yourself, the more fully you can love others. Wouldn’t you love to be a role model to your children of believing they deserve to love themselves fully just the way they are? Sadly, many – if not most – of us grew up thinking it was selfish or arrogant to love ourselves. And virtually all of us have voices in our head urging us to do more and be better in one way or another – in other words, voices that say we’re not good enough, so we’re probably unlovable, too. Not loving ourselves can have serious consequences, however. If we think we’re not good enough: We put ourselves last We feel guilty when we do something for ourselves We don’t like what we see when we look in the mirror We criticize ourselves for mistakes, heaping on the negative self-talk We do things we don’t want to do for others, either because they told us we had to or because we want to win their approval We tell ourselves we’re not worthy of anything, so we don’t treat ourselves to anything special We can’t accept compliments We don’t take time for ourselves to do anything fun on our own terms We’re unable to receive when people give us presents or the gift of their time – or, if we do, we immediately start to think of ways to repay them Does any of that sound familiar? I know they certainly did for me before I wised up and began allowing myself to accept and love myself just the way I am. It doesn’t mean I feel perfect or that I’ve stopped trying to grow as a person, but I do allow myself the grace of unconditional acceptance. At least most of the time. It’s an ongoing practice. So how do you begin to accept and love yourself? Here are several ideas. Start small. Pick one or two that seem doable, get comfortable with them, and adopt the next one. You will begin to feel more comfortable in your own skin and look at the world and other people differently the more you do. Know that it’s important to love yourself. The first baby step is awareness. Believe that you are worthy of being loved. Accept all parts of yourself (physical, emotional, spiritual, financial, relational) as they are, even though they aren’t all perfect. AND don’t beat yourself up for that. Learn from your mistakes and give yourself credit for working on these things. Be able to enjoy your own company. Look after your health to the best of your ability. Speak to yourself gently, positively, lovingly, empoweringly. Practice asking for and receiving help from others. Observe your thoughts and actions and label them positively. Easily release yourself for something you’re sorry for. Forgive yourself. Let yourself off the hook. Do one guilt-free act of kindness toward yourself every day. This Valentine’s Day, love yourself like the quality of your life depends on it. It does. Learn more: The Alternative to Feeling Like a Victim Reconnect With Your Inner Strengths How To Feel Positive About Life Again I Bloom With Grace AC (After Cancer) Me Author bio: Kristen Carter is a certified coach with a background in communications. She was diagnosed with stage zero breast cancer in 2008 and metastatic breast cancer in 2018. Writing for SBC — sharing tools that help her and others cope and thrive — is a creative outlet for her and one that gives her a sense of meaning and purpose. She can be reached at kristen@survivingbreastcancer.org . SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

Liz Mover joined SBC at the LBBC Thriving Together: 2023 Conference on Metastatic Breast Cancer through SBC’s Educational Grant Program. Read below for Liz’s takeaways from this incredible event! Saturday started with a session called Ask the Expert: Diet, Physical Activity and Sleep, with nutrition expert Rachel Beller, MS, RDN and medical oncologist Pallav K. Mehta, MD. They recommended getting at least six hours of sleep a night and developing a sleep routine. Rachel Beller discussed a few superfoods: fiber and plant-based protein. Both will help with constipation and diarrhea that those undergoing chemotherapy may experience and the protein will help with fatigue. She recommended getting about 35 grams of fiber a day and starting with at least 10 grams before noon. She encouraged us to look at where our fiber is coming from and it shouldn’t be from bars and powders. She mentioned some good sources of fiber: rolled oats/steel cut oats, fiber boosters like chia seeds, and berries. She also explained about flax seed gel (never heard of it before!) and how it can be really helpful with constipation. Some guidelines on hydration: at least 8-10 cups of water per day. Some things that can help with bloating are drinks that you can make with parsley, fennel, and garlic. If nauseous, she suggested trying a teaspoon of ginger juice in water. Dr. Mehta spoke about integrative oncology and encouraged people to look for an oncology certified personal trainer. He said two good places to look for someone who is certified in oncology is the American College of Sports Medicine and the American Council on Exercise . Another session that I really enjoyed was Coping with Grief by Kelly Grosklags, LICSW, BCD, FAAGC. Anticipatory grief isn’t just about death. It can also be when there are changes in your treatment plan. There is a big difference between loss and grief. Loss is the one-time event. Grief is the reaction/response to the loss. Secondary losses are often felt within the MBC community. Some examples are when you are so tired and can no longer attend a child’s sporting events or events with friends; medical menopause and you can no longer have children; your friend passed away and you can no longer call her. Some phrases she said that I really felt were: “You can be hopeful and still scared.” “You can grieve for someone and still be happy.” “You can be grateful and still be upset.” “It’s not our job to make someone comfortable with our story.” “Find the people that understand that.” “Remember that I lived – not that I died.” Thank you, Liz, for attending the LBBC conference with SBC and sharing your takeaways with the SBC community! SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events