By Kim Bowles President & Founder, NotPuttingonaShirt.org Every year, 250,000 women are diagnosed with breast cancer in the United States. Despite the prevailing narrative that breast cancer is a disease of older women, roughly 15% of those diagnoses are under age 40. I was 35 years old and nursing my second baby when I was diagnosed. I felt like I had entered a nightmare world and might never wake up. And I was one of the lucky ones - 10% of all breast cancer diagnoses are what's called "stage IV de novo" (metastatic breast cancer, or MBC) with no chance of a cure right out of the starting gate. And 30% of early stage breast cancers eventually metastasize. Since my own stage 3 diagnosis, I have watched in horror as handfuls of my MBC sisters have passed away, one by one. It's relentless and every October I urge people to choose to target their BCAM donations towards MBC research by supporting organizations like Metavivor. After six rounds of chemo, I chose to have a bilateral mastectomy without breast mound reconstruction. I made this choice for two reasons: I wanted to optimize my chances of never having to deal with chemo ever again (BMX), and I wanted to get back to my normal life as quickly as possible (FLAT). Being done in one surgery was critically important to me, so I brought on a plastic surgeon to ensure a smooth flat closure and minimize the risk of needing revision later. Unfortunately, that's not what I got. On surgery day, as I was lying on the operating table, I heard the plastic surgeon say "I'll just leave a little extra in case you change you mind" (to which I said, "no, make it flat"). I awoke three hours later to pockets of skin remaining on my chest - not smooth and flat like we had agreed. I knew that my chance to be done in one surgery had been stolen from me. I was devastated. The trauma of making peace with your surgical decision only to wake up to something completely different, is hard to describe. And it happens to women who are already at their most vulnerable, enduring cancer treatment. I struggled for weeks to fully accept what had happened to me. I felt violated, dehumanized, and alone. People would say things to me like "it can be fixed," or "at least they got the cancer," invalidating the trauma. I decided I wasn't going to stand for it. Over the past three years I have gone from protesting topless on the street (yes, you heard that right) to founding Not Putting on a Shirt, a 501(c)(3) organization that empowers women with tools and resources to protect their choice, and works with institutional stakeholders to build a coalition that will end "flat denial." The fact is that one in twenty women who choose to go flat is denied a flat closure by a surgeon who wants to push them towards breast reconstruction. There are many contributing factors that allow this to continue: paternalism, protectionism, lack of a standard of care, suboptimal reimbursement, and unclear language. We've made some great progress. Earlier this year, the National Cancer Institute took the historic step of defining the term "aesthetic flat closure" as rebuilding of a smooth, flat chest wall contour. Now patients know exactly what to ask for - and there's no ambiguity about what we have agreed to for unscrupulous providers to leverage against us. The term also enables advocates to push for better training and reimbursement to support providers in developing and delivering an optimal standard of care for women going flat. If you are facing mastectomy and have decided to go flat, be sure to ask your surgeon for an "aesthetic flat closure" as defined by the National Cancer Institute. Make sure it's in your medical record. And if your surgeon isn't supportive, get a second opinion. This is your body, your life, and your decision. Aesthetic flat closure is a beautiful, healthy, legitimate reconstructive choice! To learn more about aesthetic flat closure and how to advocate for your choice, access our Flat Friendly Surgeons Directory, print or order brochures to use at your consult, read about our strategic plan and how you can help, and more, visit NotPuttingonaShirt.org. #putflatonthemenu #aestheticflstclosure #notputtingonashirt Website: NotPuttingonaShirt.org Facebook/IG: @NotPuttingonaShirt Twitter: @not_shirt

By Abigail Johnston I began my experience with breast cancer in March of 2017 and experienced the pink soaked month of October a few months after we discovered that I’d been Stage IV or Metastatic from the beginning. In October of 2017, I was just weaning myself off of a cane after walking with a walker for some weeks after the surgery that placed titanium rods inside my femurs. It was an honestly a hellish few months and I’d not yet come to terms with having to close my business and trade the life of a busy business owner for the life of a forever patient. I was feeling the loss of so much, a literal loss of identity and I was drowning. I struggled, a lot, with the concept of awareness and the celebrations of survivors who were in the position that I wanted to be in – looking forward to getting back to their life they had before cancer. A few short months prior, that’s where we thought I would be and yet when I was told in June of 2017 that cancer would indeed end my life, all of those expectations were blown out of the water. I’m not sure I can articulate how hard it was to have been told I had cancer, adjusted and assimilated as best I could what would happen, only to be told a few months later that I was terminal. The first time I saw the ribbons splashed all over a retail store that October of 2017, it was the post office and I was still bald or mostly bald from chemo. When I saw the cheerful banner and how the clerks attempted to sell a page of ribbon stamps to each person in front of me, I desperately wanted to leave. But I was mailing something for the closure of the business, something to do with one of the accounts I had negotiated closing early because we’d had to cease operations and I needed it to be postmarked that day, so I gritted my teeth and kept my spot in line. As I made my way to the front of the line, dreading how each person eyed my head, some with clear pity that made me want to punch them, some with weird speculation that also made me want to punch them, and some dismissively …. Yep, wanted to punch them too. I was in quite a mood to eviscerate someone when I got up to the clerk to mail my package. I could see the indecision on her face as she rang up my order, eyeing my head and asking careful questions about what I was mailing and why, and when we got towards the end, she said something about the breast cancer beribboned stamps. Probably whatever was on their script, with a gesture towards my head. It was clear I was a cancer patient to her and she made the question a bit more personal. Despite the seething rage that is still oh so close to the surface, I managed to ask politely how much of the funds I would pay for the stamps would benefit cancer-havers. Honestly, someone should have given me a medal. Gold medal worthy performance, it was. But, after all my restraint and politeness and swallowing of the urge to throat punch each of the people in the post office that day, she didn’t know. She didn’t know if any of the funds used to purchase the pink stamps would benefit anyone except the post office. Even though she was asking me to buy the stamps with some sort of canned marketing spiel about helping those of us with breast cancer, she didn’t know how purchasing the stamps would actually do that. Before you start to think I hate the post office, let me just say that I don’t. I buy stamps regularly and have been horrified at the attempts to undermine the necessary part of our democracy system that the post office has become. I have even received medication in the mail at times during my treatment for MBC, so it’s not the post office itself that was at issue. What was at issue for me is that breast cancer was being used to sell something and, as far as the employee I was talking to was concerned, the benefit to the breast cancer community wasn’t known, wasn’t celebrated, and likely wasn’t happening. She did throw in a few comments about how raising awareness about breast cancer helped people get their mammograms, helped people remember to do self-exams, helped the population at large in some way. That’s clearly not a help to those of us who already have a diagnosis – that distinction wasn’t something that employee thought about nor most that I’ve spoken with since then. And that’s when I lost it. I don’t remember all that I said to her that day, but it wasn’t all that nice and it was intense, at least for me. None of that “awareness” helped me, I actually did find my tumor with a self-exam and I was already Stage IV. I didn’t have any issues getting a mammogram once I felt the lump, but my insurance company wouldn’t have covered it otherwise for two more years because I was only 38. I was tandem breastfeeding at the time I found my lump, and with me having found a lump they wouldn’t have wanted to do the mammogram anyway. None of the platitudes or the marketing spiels or the “awareness” or the pink ribbons every where will help those of us with MBC. The fact of the matter is, approximately 10-12% of us are diagnosed at Stage IV from the beginning despite doing everything those marketing campaigns promote. Then, 20-30% of those diagnosed at an early stage will progress to Stage IV despite doing everything their doctor’s tell them to. When you see the ribbons this October and beyond, please #ThinkBeforeYouPink. Don’t buy a beribboned item just because its October. Check with the seller, find out what will happen to your hard-earned dollars. When you find out that no individual with breast cancer will actually benefit from your purchase, consider taking the same amount of money and donating it to metavivor.org, where 100% of the funds raised are allocated to research that benefits those of us who are Stage IV.

The above aphorism is commonly attributed to the French philosopher Voltaire. Voltaire was the pen name under which the author, François-Marie Arouet published a number of books and pamphlets in 18th century France. He was a key figure in the Enlightenment, and notably was quite controversial in his day, due largely to the critical nature of his writing. His work drew on the many essays of Aristotle, Confucius, and other classical philosophers, who advanced, among other things, the principle of the “golden mean” which counseled against extremism. Let me explain this theory by using simple math. The 80–20 concept explains it this way: it commonly takes 20% of the full time allocated to complete 80% of a task, while to complete the last 20% of that task takes 80% of the effort. Another way to look at this theory is 20% of your surroundings (people, obstacles, health issues) yield 80% of your problems, and the corollary effect should thus allow us to focus on the greater good of 80% VS the 20% obstacles to our wellbeing. With that in mind achieving absolute perfection may be impossible, and any increase in effort will result in diminishing returns, thus any further activity becomes increasingly inefficient. So you may be asking “where are you going with this.” To my many breast cancer friends and loved ones I offer the following: We do not need the perfect when we can thrive with the good. Seeking the perfect in writing, art, cooking, appearance, relationships, health, etc., may be harmful to our ephemeral wellbeing. Keep in mind that you beat cancer by how you live your life. Therefore it’s best to live that life on your own terms.

By Deb Hart AUTHOR, INSPIRATIONAL, SPEAKER, MOM, FRIEND, ENTREPRENEUR, DIAGNOSED AT AGE 50 WITH LOBULAR AND DUCTAL CARCINOMA. BILATERAL MASTECOMY, INITIAL RECONSTRUCTION WITH IMPLANTS THAT ENCAPSULATED. SECONDARY RECONSTRUCTION WITH SILICONE IMPLANTA AND FATTY TISSUE/ADIPOSE TRANSTER, 3-D NIPPLE TATTOOS. Seven months after I lost my twenty-two year old son, Kasey, I was diagnosed with breast cancer. I had only been married for a few months before Kasey died. This new relation ship was based on the fun-loving, life-of-the-party girl who was foot-loose and fancy-free, financially independent and ready to live life now that the kids were gone. I was young, healthy and happy. I was these things, and in the span of just a few months I didn’t know who or what I was. Wow. Breasts removed. Chemotherapy. Infections. Had just lost my son. To say I was not a good parent would be understatement of gross proportions. I barely had any will to get up each morning, let alone to rebuild, relive, or reconstruct. However, time marches on. In the beginning of this story I struggled just to get out of bed and take a shower. In the end I wrote a book, started a non-profit, and became an inspirational speaker. In between I got new boobies. Obviously, there’s more to the story! In the train-wreck stage of things, even my new rack was a disaster. My reconstruction was ok for about five years, and them my implants encapsulated, (which means scar tissue was forming and hardening around the implants). I had hunched shoulders and pain- not to mention they did not look good. So, I found a physician who claimed he could fix me right up! We had the damn things re-moved and replaced with the more natural lipo fat implants. Well, wouldn’t you know it, this too went sideways. Because somehow, despite a “successful” surgery, two days after arriving home my kidneys failed. Subsequently my heart failed, although by then I was in the ICU and they were able to revive me. Not so for the kidneys. I was sent home from the hospital after three weeks, to a life of dialysis three times a week for five hours a day. I was told there was a chance my kidneys would “kick back in.” But for three months, this was my new so-called “life”. Like many before me I was desperate to find a reason – some purpose for all that I was going through, so I bargained and made a deal with God. I promised if he would just get those kidneys going again, I would start a non-profit to provide retreats for women diagnosed with breast cancer I would write a book. I would become an inspirational speaker. The powers that be must have liked those ideas because the kidneys started working again. I wrote a book. I started a successful 501(c)3: “Pink Sistas”, and I am an inspirational speaker. The second marriage failed (go figure)! But the new breasts are pretty good. I was nervous about them, especially being back out on the dating scene. But I did a little research and found a woman who did breast reconstruction nipple tattoos. For me, this was the key to just possible accepting, and maybe even liking my bosom! The tattoos make me think I have something resembling real breasts, and in the shadowy light of intimacy, they actually feel “real.” As for my life, I got it back by giving back….I love the creativity and heart within the process of reaching out and supporting others. Every time I share my story, I come closer to healing my heart. Our friends and family want to be there and want to help us, but they haven’t “done the journey.” It is very different to be able to speak with someone who has suffered the same kind of challenge, the same kind of loss that you are experiencing. During treatment and during surgery, out families are there for us. After this, it seems that everyone offers the “high-five”, sending cards, messages, or food. There is then a period where family and friends feel “we were there for you”, but the process continues. As we hop our of the shower and see that our breasts are gone….these are the moments when the processing begins. We begin to the voice on our shoulder saying “when is it going to come back?” “How do I get my life back together?” When you join with other breast cancer patients, there is a sisterhood that does not end in the midst of your processing, but instead reaches a hand out to every stage of dealing with breast cancer and its aftermath. There is no judgment, only understanding. Do not put a timeline on your own processes. Joy and happiness will come back. Don’t expect them to be there every moment. It’s ok; this is a true hit to self-confidence and self-image. Allow yourself to be nurtured and cared for as much as your life allows for this.

The joyful feeling of bringing a new life into the world can quickly be dashed if you also receive a breast cancer diagnosis. Suddenly, you’re thrust into a fight to protect your life. You may be concerned that the treatment you need could harm your baby. Or you may worry that treatment won’t be as effective if you’re pregnant. But it isn’t all bad news. According to estimates from The National Cancer Institute, only one in every 3,000 women is diagnosed with gestational breast cancer. And, several medical alternatives can slow the progression of the disease without compromising the pregnancy. Because pregnancy causes your breasts to swell and become tender as milk ducts grow and stretch to prepare for breastfeeding, it may be more difficult to detect small lumps and to diagnose breast cancer. It’s good to know that most breast lumps found during pregnancy are unlikely to be breast cancer. But you should still bring any suspicious lump to your doctor’s attention and go through the proper tests to find out whether it might be cancer. DON’T WAIT until after you deliver your baby to have your doctor check the lump. We hope this information about pregnancy and breastfeeding is a useful addition to our collection of valuable information and resources and personal stories to help in any way possible. Testing Methods & the Risks During Pregnancy: Mammograms According to the American Cancer Society, mammograms are generally safe when you’re pregnant. The test requires only a small amount of radiation, and the radiation is focused on the breast, so most of it doesn’t reach other parts of the body. For extra protection, a lead shield is placed on the belly to block any possible radiation scatter. Ultrasound Ultrasound is considered a safe tool for examining the breasts of pregnant women. It is usually used before mammography to evaluate a palpable lump (a lump you can feel). For pregnant and non-pregnant women, ultrasound can accurately tell if a lump is a harmless cyst filled with fluid or a solid mass that could be cancerous. It’s much less accurate at distinguishing between a solid lump that is breast cancer and a solid lump that is not. MRI The U.S. Food and Drug Administration says the safety of magnetic resonance imaging (MRI) during pregnancy hasn’t been established. There have been small studies that indicate an MRI doesn’t cause problems in pregnant women. Talk to your doctor about whether this type of test is safe for you and your baby. Biopsy A biopsy, a procedure in which doctors remove a small portion of the suspicious breast lump, is used to diagnose breast cancer with certainty in pregnant and non-pregnant women. Such tissue can be removed by a needle (needle or core biopsy) or by surgical removal of the entire lump (excisional biopsy). A biopsy can usually be an outpatient course of action. There is little risk to the baby. A biopsy can also be done under general anesthesia if needed, with minimal risk to the baby. Treatment for Breast Cancer During Pregnancy Since it’s rare that pregnant women are diagnosed with breast cancer, there hasn’t been a lot of research on treatment for breast cancer during pregnancy. Guidelines have been developed to ensure that pregnant women receive excellent breast cancer care. Most studies show that pregnant women respond to treatment as well as other women of the same age and with the same stage and type of breast cancer. You need to do everything you can to treat it so you can mother your baby. A study of 129 children from September 2015 found that babies whose mothers are treated for cancer while pregnant have no development problems. Treatments looked at included radiotherapy, chemotherapy, surgery and medication, and babies exposed to these in utero were no different from those whose mothers had cancer but received no treatment. Breastfeeding If You Have Breast Cancer Breastfeeding provides many physical and emotional benefits to both baby and mom. Still, for moms who have a current breast cancer diagnosis, or who have received breast cancer treatment, the decision is even more complicated. Breastfeeding during cancer treatment In many cases, doctors will advise against trying to breastfeed while undergoing breast cancer treatment. Although cancer cannot be passed from the mother to the baby through breastmilk, certain chemicals from chemotherapy and hormone therapy can be. All procedures may not have the same effect, so it is important to talk with your oncologist about your treatment plan and with the pediatrician about the impact these medicines could have on your breast milk, and ultimately, on your baby. You should also take into consideration the physical and emotional toll that undergoing therapy may involve. You and your doctor may prefer to conserve your energy and time for reclaiming your health, verses for milk production. Breastfeeding after cancer treatment The answer to knowing if you can still breastfeed after treatment depends on your situation. If you had surgery on only one breast, the unaffected breast should be fine. Treatment on the affected side may have damaged the tissue, making it uncomfortable for you to breastfeed or difficult for the baby to latch on. Breast surgery and radiation can affect the amount of milk that the breast can produce. If you are interested in breastfeeding after cancer treatment, it is crucial to work with your child’s pediatrician to make sure your baby is getting the nutrition they need. A certified lactation consultant can also provide encouragement, guidance and resources. Keeping the baby in your room after delivery, maintaining skin-to-skin contact and feeding on demand can help accelerate and maximize milk production and family bonding. Be sure to check out our events, webinars and programs to learn more about surviving breast cancer. Best wishes for a healthy pregnancy!

By Rachael Curry Did you know that the Food and Drug Administration (FDA) does not require safety tests for makeup products before they're released to unaware consumers? Yes...you read that right. There are only 11 ingredients and color additives that the FDA has actually prohibited. This might be shocking, until you attempt to read the ingredient names on the back of your bottle of foundation. If you can't pronounce any of them, you're not the only one! Our skin is our largest organ. What we put on our face can penetrate into the deeper levels of our skin and be absorbed into our bloodstream. While it is not as literal as dabbing lavender essential oil on our wrist and wondering if it will show up the next time we have your bloodwork taken, there is some truth in knowing what we lather, rub, spray and pencil onto our faces can enter into our bodies. So, what exactly are we putting on our skin? And why is "clean beauty" (defined as beauty products composed only of ethical and proven ingredients) so important? In the EU, cosmetics ingredients must be assessed for safety before entering the market. Those that are linked to harm are restricted. Unfortunately, this level of oversight does not exist in the US, thus enabling cosmetic companies to prey on the unwitting US consumer as a test subject - which is both unethical and dangerous! I am not saying you must immediately toss out all of your makeup products, shampoos, and cleansers, but I would argue that we should make the transition to conscious beauty. If we want to be healthy, not just in terms of diet and nutrition, but lifestyle, then let’s also start to make the shift in terms of how we are taking care of our bodies on the outside! Let’s start with the basics as we make this transition to being more aware of toxins in our everyday products. Here are my top 5 to look for when searching for cosmetics and self-care products: 1. Parabens According to the Environmental Working Group, (EWG), parabens can act like the hormone estrogen in the body and disrupt normal hormonal function. There is concern that exposure to environmental estrogens may contribute to the risk of breast cancer in women by changing the gene expression and accelerating the growth of breast cancer cells (Wróbel 2014, Okubo 2001). Long-Chain Parabens Long-chain parabens, like propylparaben and butylparaben have been linked to increased levels of estrogen activity. Most recently, European Chemicals Agency has listed butylparaben as a substance of high concern and will be phasing out products that contain this hazardous chemical. 2. Phthalates Phthalates are another endocrine disruptor to watch out for. They are typically found in self-care products like deodorant and nail polishes - which add to the plasticity of the product. 3. Ethylene Oxide According to cancer.gov, this carcinogen can be linked back to breast cancer. It is commonly found in Formaldehyde. Ethylene oxide is on the list of what I call the “Unknown 7”. That is because there are 7 ingredients that US manufacturers do not need to disclose. While Canada and the EU are required to disclose the information, there is currently no legislation on the regulation of this toxic, cancer causing substance within the US. Ethylene oxide is found in common products such as nail polish and eyelash glue, as well as baby soaps and shampoos. Since this is one of the “hidden” ingredients, the only way to avoid this carcinogen is by looking for ingredients that enable the slow release of formaldehyde such as: Diazolidinyl Urea DMDM Hydantoin Imidazolidinyl urea Quaternium-15 Tosylamide/Formaldehyde Resin Sodium hydroxymethylglycinate 2-bromo-2-nitropropane-1,3-diol (bronopol) Polyoxymethylene Urea 5-Bromo-5-Nitro-1,3 Dioxane Methenamine Glyoxal Benzylhemiformal 4. Petroleum Distillates These ingredients are often produced in the same location as the cancer-causing chemicals found in gas and oil. It is most commonly found in mascara - and besides the harmful chemicals, it can cause skin irritation and dermatitis. 5. Fragrances Fragrances as a whole might seem like quite a large category. However, fragrances can be potentially harmful as the US does not require manufacturers to list the chemicals that their fragrances are actually composed of. So, when you see “fragrance” listed as an ingredient, it could be referring to a number of different chemicals. For those with sensitive skin, fragrances can be extremely irritating, and in others, can even cause potential allergic reactions. And because the actual chemicals are not disclosed, fragrances can sometimes be cancer-causing. All of this information may seem overwhelming at first! It is hard to be conscious of what’s inside every product we purchase - from food, to cleaning supplies, to makeup, and more. It is also okay if you do not have the energy or resources to completely transform your beauty products. Perhaps there is just one type of product you’d like to think more consciously about, and that is a great place to start! If clean beauty interests you, there are many brands within the US that have begun to focus on creating safe and ethical cosmetics: Thrive Causemetics is one clean beauty brand that sells products free of parabens, phthalates, sulfates, and fragrances. Additionally, a percentage of their profits are donated to partners, several of which are breast cancer organizations including ours, survivingbreastcancer.org! Follain is another brand that has a laundry list of restricted chemicals for their products. They also use safety reviews and performance reviews to ensure that their cosmetics are both safe and good quality before entering the market. (Follain also has two storefronts in Boston, located in Beacon Hill and the South End!) They have also expanded to TX, WA, and MD as well! Now, some major makeup retailers such as Sephora will even allow you to filter their products in order to view only the clean beauty products. One easy way to make the transition to clean beauty might be to replace old products as you run out - such as purchasing a “clean” eyeliner when you run out of your old eyeliner. If you are someone who prefers to buy makeup at the drugstore, you might just look for products that have smaller lists of ingredients or lower concentrations of the ingredients above. There is never a bad place to start! If you are interested in learning more about clean beauty, hear from reps at Follain, Ecothriver Cultivate Cleaner and Amy Ferraro Whitset who is an Independent Consultant for Beautycounter on the podcast, Breast Cancer Conversations.

I used to think that August was one of the hottest, most humid months of the summer. But this weekend proved me wrong. Boston was overcast, high 70's, no humidity, and actually a bit chilly. A sign of things to come. Can summer really be over? Are we already in the mindset of the next school year? For some of us, that means our kids are getting ready to return to college. The move-in process is starting several weeks earlier than usual enabling students to return home by Thanksgiving and not having to risk traveling in November/December during a health pandemic. For others of us, we continue to attend PTA meetings and town halls trying to figure out what our school district will decide. In a given academic year, we try to coordinate school pick up and drop off while we attend chemo and plan for surgery. But this year is overly complicated. Does it have to be? Are we over thinking this because it's new?  We can remember many other obstacles and challenges that we overcame and yet somehow this fall, we are facing the tallest and steepest mountain yet. Let me reassure you, you will scale this mountain! It will not be easy, but you have the ropes, carabiners, helmet and an entire team of supporters on the ground belaying so you won't fall. How to Scale Mt. September Map the course. Write out your list of essentials and tasks that must get done leaving aside all of the "nice to haves" for another time. We just need to focus on the path of least resistance. Pack your hiking bag accordingly. Hand sanitizer is a given, along with mask. Then add your fruits and veggies because you know you'll need fuel. Healthy proteins like beans that you know will not go bad. Choose your belay team accordingly. These are the people that will have your back as you begin to ascend Mt. September. Who is in your inner Covid circle? Who are the friends and family you can trust to come to your rescue at a moment's notice. Put your list together and let them know they are your team! They'll feel honored and even take extra health precautions knowing they could be called upon at any moment. Synchronize your watch and activate your GPS. With all of the health apps out there, we know technology is playing a larger rule in our day to day. Speak with your doctors and learn what appointments you can attend virtually via telehealth. This will certainly save you time on the commute and needing to secure child care and even save you a few buck on parking! Start your hike.  One foot in front of the other. Do not try and tackle the entire fall season at once. Take it one day at a time. Be willing to adapt. Be kind to yourself and know that it doesn't have to be perfect. You need to take care of you. If you get off the trail and into the "puckerbrush", no problem, readjust that compass and carry on! Most importantly, you are not in this alone. If you are looking for community to talk about everything you are going through, now is the time to reach out. Join one of our Thursday Night Thriver Calls and we will all get behind you and hoist you up Mt. September

As states begin opening up and people start to emerge from weeks and months of sheltering in place, one must ask “is it safe to go back out”? In Boston, it was surreal to walk the desolate streets, sans cars, signs taped to storefront windows with bold black letters that held the same message "closed until further notice", and parking was available everywhere. Walking During Cancer Looking back at the time of my Dx I would get out and attempt to take walks. For walking seemed to have been the level of exercise I was able to engage in. I did so through chemo, post surgery, and, despite the fatigue from, radiation. Some days it would be less than 1000 steps. Other times I hit my 10K goal. Walking was meditative. It gave me structure during a time when there were many unknowns. Strutting down the uneven sidewalks of Boston somehow grounded me, allowing my mind to quiet down and take in the sites and sounds and beauty. Walking During COVID-19 Nowadays the lines of working from home and home-life have gotten blurry. Before COVID-19, I would wake up on Monday mornings, fight with my wardrobe before settling on something to wear, lather on concealer and then run out the door - only to sit in traffic for 45 minutes. Initially, working from home was exciting. I would wake up Monday, enjoy a hot cup of coffee, and mosey on to the kitchen table. There I would open my laptop and start my day, all the while being comfortable and cozy, in my yoga pants and possibly a nice top if I had meetings on Zoom. I knew I had to figure out a way to create structure so I turned to what I did during times of concern, of unknown, and anxiety. Walking. Just like then, on some days I had the energy and time to walk 5 miles while other times I was lucky enough to escape during a lunch break to do a lap around the block. During my recent daily walking routine, I have started to notice that more and more people were stepping out. We are on the brink of summer and everyone is longing for the warmth and just to be outdoors. More and more cars are on the road as families head to the Cape for a long weekend, or an escape up north to their lake house or mountain retreat. Slowly people are losing their concerns over COVID-19 as the news reports encouraging declines in new cases and deaths. Life After COVID-19 Most states have now begun to open up. Restaurants are starting to prepare for outdoor seating and companies are diligently working on their reopening operations/strategies. But by no means is COVID-19 gone. I wonder what life will be like after a global health pandemic: Will we continue to stand in lines before entering a grocery store? Will wearing face coverings become the norm? Will we ever shake hands or hug and kiss again? What Is Your Comfort Level as States Reopen? People will certainly have different levels of comfort as we emerge from sheltering in place. Imagine the scenario: A friend invites you over to her home for an outdoor BBQ. Before COVID, it would have been an automatic "yes" and you would offer "what you can I bring". This still may be the natural response from most people. However, after months of practicing social distancing, I have to ask myself, am I ready to be social again? We will all have different levels of tolerance as we navigate this new path: Life post COVID. It's critical that as we begin to return to social gatherings and the luxuries of dining out, getting your hair blown out, or visiting with grandparents, there are still healthy and safety practices that are strongly recommended, like wearing a face covering, continuing to wash your hands frequently, and remaining a respectable 6ft distance from others. When I asked a colleague how she felt about going back out and seeing friends and family, she expressed similar concerns but suggested the tactic of utilizing a color scale to talk about comfort levels. This is a way for friends and family members to discuss the delicate topic that has the possibility of making someone feel uncomfortable if they decline to grab a dinner out or return to the shopping malls. If you are open and don't mind jumping on a plane or hugging your friends as a gesture of hello, you could say you are "Green" and ready to, though some experts would not advise this unless it is necessary to travel and you should still wear a face covering! On the other hand, you may be comfortable meeting up with 2 or 3 friends while all wearing a mask, exercising social distancing, and gathering in an outside space. We'll call this "Orange" or "Yellow". Using the sliding color scale lets you and your friends know where you are emotionally and mentally as we begin to open up and resume some sense of normalcy. Andrew Noymer, a public-health professor at UC Irvine states that “going for a walk with a friend in a park is probably better than hanging out in your friend’s living room,” and the same health and safety measures apply. Below is a roundup of tips and recommendations from the Atlantic, Today, Southshore Health, and the Boston Globe : If you are returning to a physical office take the stairs instead of a small and crowded elevator. If you are on the 17th floor, wait for the next elevator to arrive so it's less crowded. If you normally take public transportation, speak with your manager to see if you can adjust your hours and commute during non-peak hours. When dinning out, bring your own disinfectant wipes to clean the tables, chairs and menus. Refrain from eating with your hands and try to dine in outside areas when possible. Stay updated on your state's reopening strategy. Remain flexible to the phased approach knowing that things are still subject to change. Communication is key. if you are a business that is reopening, share your plans with your staff and clients. If you find yourself feeling ill, don't try and be the hero, take a sick day or see if you can work from home. There isn't a switch we can flip to return back to the way things were in 2019. We have a new line in the sand that has been drawn which we have crossed. There's no turning back. As we know all too well with our own cancer diagnoses, we have an ingrained moment in time when we recall life Before Cancer. Similarly, the world is striving to fight off disease, develop a vaccine, and return to life Before COVID-19. To all of my friends who recall the 90's feminist, expressive, and relatable indie rocker Alanis Morissette, we now have two defining moments of life B.C. isn't it "Ironic" P.S. A recently published peer viewed article in the journal of Nature states that the shutdowns prevented 60 million coronavirus infections in the U.S., and estimated that the it saved about 3.1 million lives in 11 European countries and dropped infection rates by an average of 82 percent.

On November 15, 2016 I had my annual mammogram, which I have had every year since I turned 40. After my mammogram in 2013 I remember how my heart dropped when I got a call saying I needed to come back for an ultrasound of my right breast. What they saw turned out to be a small cyst, absolutely nothing to worry about. So, when I received a similar phone call after my 2016 mammogram about something that needed to be examined further in my left breast, I was so unconcerned it was almost two weeks before I called to schedule the necessary appointment. On December 22, 2016, a few weeks after my 46th birthday, I returned for the additional testing; mammogram compression views of my left breast, and an ultrasound. Lying on the table in the ultrasound room, I assumed the position with my left breast exposed and my left arm above my head as the technician did her thing. I watched as she measured something she saw on the screen. When she finished she said, "Stay in the same position. I'll be right back." She returned with a male doctor who told me I had a mass in my left breast that would require a biopsy. Baffled, I asked, 'So, this is something different than the cyst that was seen in my right breast 3 years ago?' He quickly responded, "This is something completely different." Then proceeded to explain what the needle biopsy would be like. He said other than a needle stick to numb the area I shouldn't feel anything. Next, they allowed me to get dressed and took me to the "quiet room" so a very nice woman named Vanessa could softly tell me not to worry and that 90% of the time it turns out to be nothing. I'm thinking, 'Well Vanessa, it may not be cancer, but it is obviously SOMETHING or I wouldn't be sitting here in the quiet room with you so you can make sure I understand what the doctor told me." The biopsy was scheduled on January 9, 2017. Biopsy day finally arrived. I was not nervous or anxious at all. I was at peace. I got dressed, put on make-up, took a selfie, sent it to my family and joked that I had to make sure I looked my best just in case the doctor or someone involved with the procedure was a hot, single, tall, Christian man. I figured he would've already seen my boobs, which may qualify as a first date. No such luck. That day I learned to never let a man tell me what will or won't hurt my lady parts. The assault on my left breast that they called a needle biopsy was far more painful than described. When it was over I was told my doctor should have the results within 72 hours. On January 10th, the very next day, I got a call from my doctor's nurse who told me my doctor would like me to come into the office so he could talk to me that day. I went alone, knowing the results must be cancer. That day, I was diagnosed with invasive ductal carcinoma. My doctor carefully explained my new "team members" would be a breast surgeon and an oncologist who would begin the process of "staging," which would require more diagnostic testing. After the overwhelming amount of tests, scans, and doctor appointments. It was determined the tumor in my left breast was just shy of stage 2 by 0.3 centimeters. After a long heart to heart with my breast surgeon, she and I agreed a lumpectomy was a good option for me. She explained she would also remove two lymph nodes to be certain the cancer had not spread. On January 30, 2017, as I was being wheeled into surgery, I prayed, ‘God, I don’t want to wake up from this surgery. I’m tired of fighting.’ I had just spent five years recovering and adjusting to my new normal after suffering a stroke on February 2, 2011, which required extensive physical, occupational, and speech and language therapies. From the day I received my breast cancer diagnosis to the moment I was being wheeled into surgery, I was never afraid of dying from breast cancer. I was afraid of what it would take to live through breast cancer. Just before the anesthesia kicked in, I heard softly in my spirit, “If you promise to wake up, I promise to carry you through.” The results of the pathology report indicated my tumor was high grade, ER+. My breast surgeon and oncologist hoped I would be able to bypass chemotherapy and begin radiation four weeks after surgery. However, the results from my Oncotype Test determined chemotherapy would also be a part of my treatment plan. That day, I cried. For the entire year, I would go on to complete what I now call my, “Breast Cancer World Tour 2017.” I met some amazing people along the way and have a medical team that has become family to me. I did six months of chemotherapy, seven weeks of radiation, and was prescribed Anastrozole to take for five years. Chemotherapy was as hard as I thought it would be. Radiation, though not invasive, left me feeling like I had the flu on steroids. Not to mention the painful burns that occurred during the last week of treatments. On January 12, 2019 I suffered another stroke. Though milder than the first in 2011, I was taken off of the Anastrozole immediately, because of the associated risk of stroke. Two and half years later, I don’t know that I would say I am a breast cancer “survivor.” Warrior, seems a much better word for all of us that get up each day and fight an enemy we cannot see with our eyes, but know is lurking in the shadows. I’ve discovered recovery and healing from such a viscous disease and its treatments is a lifetime process. Each morning that I open my eyes, I am so very grateful that I woke up!

It all started in May of 2019. There was an annual exam I put off for quite some time. I thought to myself, I need to make an appointment. I finally went in for my exam. All was well until my doctor checked my breasts. She found a lump. "Did you ever feel this lump before?" she asked me. "No. Should I be worried?" "No no. I will send you to another place to get it checked." I went on with my day, but I was a little worried. Did not think much of what she said. I told my mother about it, and she said no way, it cannot be anything serious. I never made an appointment at that time. I did not have insurance or Medicaid. Luckily, a lady from a non-profit clinic called me to make an appointment. I said to her “I am sorry ma'am, but I do not have $500 to make an appointment for a mammogram.” I got my information wrong. The lady told me "it is free!" Well, in that case, I made the appointment. Summertime was approaching, and my kids were getting out of school. I made plans to go visit my family in Virginia. I booked my tickets for three weeks. Beforehand, I made sure to get my mammogram. Stepping into the doctor's office I did not see anybody my age. The nurse calls my name to get a mammogram, and I am in high spirits. "You wait outside, and the doctor will see if we need any more pictures from you." They called my name back. Now I am having an ultrasound done. The nurses are taking multiple pictures. They move the ultrasound stick inch by inch. The nurses call the doctor in. "I need you to come back to get a biopsy." I asked why?! I told the doctor I already booked tickets to see my family. The doctor nervously said to cancel my tickets, or to do a biopsy in Virginia. "Doctor, can you at least tell me if it is cancerous or not?!" "No, not until the biopsy." My heart sunk. It is a feeling I do not want to have. It was hard to breathe. The room was caving in. I walk over to another lady to make an appointment for the biopsy. "When would you like to make it? Is July 3 okay?" I choked up then started crying. I am in total shock. The poor lady tried to comfort me. I stuttered and said that date was fine. I walked into a dark parking lot, sat in my car, and called my husband right away. I told him what was wrong, and he tried to console me. He tells me it will be okay. Everything will be alright. What a sweetheart. While I was visiting my family, my diagnosis was always on the back of my mind. My sister and mother did not think for a second it was breast cancer. After all, it does not run in our family. I would be on my phone looking for answers and support. My heart kept sinking...this seems like breast cancer. No no it can’t be, I thought. I went on with the next couple of weeks, enjoying my vacation. I came back to do a biopsy appointment. A week later, they called me in for my results. I went in by myself. Unfortunately, they confirmed it was indeed stage 2b breast cancer. Then I spent about a month doing tests after tests. I was scheduled for 6 months of chemotherapy. One month A.C. chemo, then Taxol. A single mastectomy in March of 2020 was done, and had 33 rounds of radiation in June 2020. During my first round of chemo, I was not too nervous. I kept my head up, and my spirits high. First one done, three to go! It was pretty rough the first week. I was fatigued and barely ate. Also, I felt sick to my stomach. My mother and husband were there to help with the house and kids. I will never forget all the support I got. I zoomed by my other rounds of chemo. Luckily, they were surprisingly easy. No effects, did not feel sick, I even had energy. Throughout my breast cancer journey, I relied on God and kept a positive outlook. That was what helped me the most. How can I worry if my life is in God’s hands? Whatever He has planned for me it is for The Best. I thank God for everything. As of September 2020, I have been cancer free since March 2020. I have hormone therapy left for five years. It’s okay. I will do it. I will make it and you will make it too.

Kimberly’s Korner: Investigating the Health and Racial Disparities in Breast Cancer (Part III) Background: There seems to be a gap in both access and treatment for black women when it comes to breast cancer treatment, and I am interested in understanding why that is. There are many reasons as to why I choose this topic; firstly, having a grandmother who has battled breast cancer twice. Sadly, it was not until I was well into adulthood that I truly understood her experience and her illness and the way in which my family, an immigrant family at that, viewed her treatment process. Secondly, interning for a few Breast Cancer advocacy groups has allowed me to push aside my cultural perception of cancer and illness, and take on a more realistic and honest approach. In this 3-part series (Screening, Diagnosis/Treatment, and Survivorship), I aim to guide you through the screening process all the way to survivorship, and the barriers that black women may encounter when diagnoses with Breast Cancer. --------------------------------------------------------------------------------------------------------------------- In Part I and Part II of the three-part series of Kimberly’s Korner, we delved into the health disparities for women of color from screening to diagnosis and treatment when dealing with breast cancer. This series touches the surface as to why there are racial and ethnic disparities in breast cancer access and treatment for African American women; explaining how differences of outcomes in each stage of the breast cancer journey vary. In the screening stage, factors like race and social class are more pervasive. But in the diagnosis/treatment phase, barriers like age and ethnicity shape it. And lastly, surviving cancer encompasses more of the African American woman’s family, gender, and religious affiliation. COPING/SURVIVORSHIP There are cultural variations in the ways in which individuals of different communities and societies handle oppression, grief, and illness. Another obstacle, less medical, that African American women with breast cancer must overcome is coping. Coping with the diagnosis of breast cancer can be a task lasting forever—even after survivorship. Historically, African American women would have never been able to survive under the dangers of slavery, colonization, genocide, etc. had it not been for their creativity with coping skills. A huge part of coping with surviving breast cancer for African American women is building a community. The biggest and most documented coping skill of African American women in response to breast cancer diagnosis or recovery is spirituality and religion. Not only is religion and spirituality used for coping an illness, it is also used to manage any adversity. Most women of color view health holistically; which includes “spiritual, moral, somatic, physiological, psychological, social, and metaphysical dimensions” (1). Many surveys and studies have found that for a large majority of African American women, their faith in God and their health behavior were inseparably coupled. To many, God was said to have been the reason to that they go and see doctors as well as how well the doctors succeeded in their treatments. This study also found that African American women expressed a belief in effective coping skills to be grounded by five pillars: self, God or nature, family and friends, other survivors and the health care treatment team (2). Communalism is also a part of the African tradition. Central to African American women’s survival is family and friendships; a genuine sisterhood of bonding that promotes self-acceptance and provides emotional support used to relieve everyday stresses. Most African American women “seek help from extended family members, very close family friends ministers, and church leaders…Quite often, only after exhausting available inner, familial, and spiritual resources does the person seek medical advice” (2). This goes back to the idea that there is a disconnect between African American women and healthcare providers and the healthcare system. But this also helps us to understand just how African American breast cancer survivors view themselves. Culturally, African American women are usually the caregivers in their homes and communities, so for them going through this illness, and overcoming it, can have a tremendous effect on how they decide to live their lives. The common saying, ‘strong black woman’ is internalized and often times African American women go above and beyond to live up to it. Breast cancer is dealt and perceived somewhat secretly in the African American community. Although African American women strongly believe in communities and having support when she deems it necessary, there is still a code of silence among survivors and fighters. Breast cancer survivors, after battling and beating the disease, view themselves in a completely different light. An African American woman’s perception of herself through her detection and her treatment of breast cancer is one phase, but through and after the battle, she goes through another. In the novel, ‘Wings of Gauze: Women of Color and the experience of Health and Illness’, editors Barbara Bair and Susan Cayleff bring up concepts that are not usually talked about in the African American community regarding breast cancer. Issues concerning the sense of her own body, her womanliness, her role as a caregiver, and her romantic relationships. This hesitation of unfamiliar dependence and vulnerability plagues the community. The Bair book also introduces Audre Lorde into the narrative of breast cancer and endurance. It allows for readers to be enlightened by the debate about the feelings that having cancer provokes in women of color and the sometimes-false meaning that we attach to them. With Audre Lorde having been a victim to breast cancer herself, her essay presses women of color to ‘break the code of silence’ surrounding the issue of cancer, to question the sense of helplessness and indifference that characterizes women of color’s response to the disease and to confront the risks and speak out about them. Admittedly, there are similarities but the differences in survival between African American women and other communities are credited to many factors. All too often society looks to socioeconomic status, access to healthcare, poverty, and education level as the offenders in answering the questions that regard poor African American women’s health status. Not to say that these factors are not contributing to African American women’s ill health. There is a large population of people who are still uninsured, and a large portion of those people are African Americans. When this fact is coupled with the blatant historic racism that African Americans face, a recipe for compromised health status arises. From Audre Lorde’s Cancer Journal to the breast cancer activism of the 1990’s and 2000’s, the notion of health disparities used in public health initiatives and programs has been a topic of discussion. A call for new approaches to close the gap of racial and ethnic inequalities in breast cancer access and treatment is necessary. These strategies and approaches are needed to promote breast cancer prevention, improve survival rates, lower breast cancer mortality, and ultimately improve the health outcomes of racial/ethnic minorities. Furthermore, it is imperative that leaders and medical professionals from minority population groups be included in decision-making research so that racial disparity in breast cancer can be well-studied, fully addressed, and ultimately eliminated in breast cancer al together (3). References: (1) Saint- Germain, M (1993). Resignation and Resourcefulness: Older Hispanic Women’s Responses to Breast Cancer. In Wings of Gauze: Women of Color and the Experience of Health and Illness. Barbara Bair and Susan E. Cayleff, eds. Pp 257-272. Detroit: Wayne State University Press. (2) Bradley, P. (2006). Breast Cancer in African American Women. In African American Women’s Health and Social Issues. Catherine Collins, ed. Pp 36-42. Westport: Praeger Publishers. (3) Yedjou, C. G (2019). Health and Racial Disparity in Breast Cancer. Advances in experimental medicine and biology, 1152, 31–49. https://doi.org/10.1007/978-3-030-20301-6_3

Kimberly’s Korner : Investigating the Health and Racial Disparities in Breast Cancer (Part II) Background: There seems to be a gap in both access and treatment for black women when it comes to breast cancer treatment, and I am interested in understanding why that is. There are many reasons as to why I choose this topic; firstly, having a grandmother who has battled breast cancer twice. Sadly, it was not until I was well into adulthood that I truly understood her experience and her illness and the way in which my family, an immigrant family at that, viewed her treatment process. Secondly, interning for a few Breast Cancer advocacy groups has allowed me to push aside my cultural perception of cancer and illness, and give access to the more realistic and honest approach to it. In this 3-part series (Screening, Diagnosis/Treatment, and Survivorship), I aim to guide you through the screening process all the way to survivorship, and the barriers that black women may encounter when diagnoses with Breast Cancer. --------------------------------------------------------------------------------------------------------------------- In Part I of Kimberly’s Korner, we explored some of the reasons for screening discrepancies. They not only included low socioeconomic status and lack of insurance, it also includes cultural and relational reasons; even specific biological characteristics of the tumor can account for differences in screening results for women of color. Together, all these pieces, and so much more, can contribute to the late stage diagnosis for African American cancer patients during the screening process. DIAGNOSIS AND TREATMENT There has also been a considerable amount of discussion around the argument as to whether differences in diagnosis and treatments are based on race or socioeconomic status. The effect of race and socioeconomic status on breast cancer diagnosis and treatment leave African American women at a greater risk of dying from the disease. There is considerable evidence suggesting that economic disparities or disparities in insurance coverage are the cause of breast cancer diagnosis, treatment, and survival more than the assumed construct of race (1). However, most of the current literature around this topic propose that racial disparities occurring in breast cancer diagnosis and survival persevere even when socioeconomic status is controlled. Though we touched on it in Part I, the type of insurance, or lack thereof, a woman has plays a major role in the way that she seeks treatment. And to many poor, under-served women of color battling with breast cancer, lacking insurance coverage may even be the reason why they discontinue treatments or chemotherapy. Both the presence and type of health insurance can be an important determinant of ones’ cancer stage at diagnosis. Access to health care, the most appropriate kind, is a privilege. Irregular breast cancer screenings and failure to detect and respond to the symptoms are all outcomes to socioeconomic factors like poverty and access to healthcare. A 2015 study[1] found that in non-Hispanic whites with government insurance, there was a significant shorter diagnostic time than non-Hispanic African Americans with government insurance, with the average times being 12 and 39 days correspondingly. The research also found that privately insured non-Hispanic whites also had considerably shorter diagnostic times than privately insured non-Hispanic African Americans. At the end of the study the authors concluded that other barriers associated with race and ethnicity influenced access to quality and timely healthcare For African Americans than lack of health insurance alone. Besides insurance plans and late diagnoses, some may say that treatment of breast cancer is the most physically daunting and exhausting stage of the ‘journey’. The underlying differences at the stage of diagnosis and treatment is socioeconomic status (again). As we mentioned in Part I, African American women at lower socioeconomic levels have been linked with lower survival rates. Delay in seeking out treatment for one’s breast cancer symptoms is viewed mainly as patient initiated. But healthcare barriers like a lack of cultural competency from healthcare professions and limitations to cancer surveillance systems can widen the gap and delay African American women from getting the help and services they need to survive breast cancer. “Healthcare system barriers that may lead to African American women delaying [treatment] include differences in access to preventative health care…; inadequate continuity of care; the inconvenience of health care facilities’ available hours, days, and location; cost of service; lack of transportation”(2). Once an African American woman has been through screenings, gotten her diagnosis and is now at the stage or treatment, there are still obstacles and barriers that she must overcome. The author, Patricia Bradley, makes a strong statement. Things that other racial groups, like whites and Asians, may deem simple and straightforward, like ‘lack of transportation’, can be life or death for others. Strangely enough, a comprehensive report from the IOM (Institute of Medicine), found that even when racial and ethnic minorities in the Unites States had their insurance status, income, age, and severity of condition similar to that of a white persons, they still received lower quality health care. This introduces both cultural competency and racism as barriers. It is really the job of healthcare systems to realize that diverse communities and populations learn, perceive, treat, and understand illnesses differently. Different populations have varying needs and not all groups of people respond to the same methods of treatment. Right now, there are interventions that focus on African American women, and they are designed to address the individual behavior barriers to breast cancer care, but it is not all on the patients and the health care system. Health care providers, and oncologists, play a vital role in connecting African American women, and any other racial minority group to screenings, treatments, support, and breast cancer education. Already disadvantage in their communities and schools, cultural groups are faced with disparities in the one place where they are supposed to be taken care of regardless of their skin color—the healthcare system. Racism and prejudice are substantial system-related barriers resulting in overdue treatment. More times than not, racism is a result of institutional and systematic attitudes and choices that unfortunately create a culture of discrimination, and the health care workers are influenced. Experiences of racism for African American women are often seen as cumulative, where new encounters interpreted based on past experiences with racism, knowledge of others experiences of racism and the simple systematic nature of racism. However, racism is a touchy subject for all non-minorities or people in powerful positions. It is a challenge for clinicians and researchers to understand historically based realities of racism and the impact of the situations that underlie African Americans’ deep sentiments of distrust in health care providers, healthcare systems/programs and research. This leads to disparities when it comes to receiving test results, access to follow up services, and/or getting assistance in treatment decisions. Cultural competence, which is the set of information and practical skills needed to appropriately deal with illness patients and families who belong to different cultures, ethnicities and backgrounds, today, is increasingly considered a key factor in health care practices. Cultural competency is key for healthcare providers as they must understand why women in communities of color with breast cancer choose to wait so long to seek treatment. Or why some conventional ways of treatment may not be an option for them. White women are often held and regarded as the standard of normalcy and universality, while blacks are the opposite—deviant from the norm. This, in a sense, is a form of subtle racism. “African Americans are disproportionately represented in mortality and morbidity statistics for medical problems such as cancer; they are, however, underrepresented in treatment and prevention trials” (1). Perceived racism may play a major role in the under utilization of screening activities and influencing subsequent negative health outcomes. However, acknowledging the systematic racism and prejudices in healthcare treatments among women in communities of color can save lives. Cultural competency, which can greatly lessen disparities and reduce the burden of unequal breast cancer treatment, is difficult and complex to make universal. The relationship of culture to illness is composite. A considerable amount of breast cancer treatment research has been conducted, but with limited success for African Americans compared to other ethnic groups. Therefore, new strategies and approaches are needed to promote breast cancer prevention, improve survived rates, reduce breast cancer mortality, and ultimately improve the health outcomes of racial/ethnic minorities. In addition, it is vital that leaders and medical professionals from minority population groups be represented in decision-making in research so that racial disparity in breast cancer can be well-studied, fully addressed, and ultimately eliminated in breast cancer (3). References: (1) Bradley, Patricia K (2006). Breast Cancer in African American Women. In African American Women’s Health and Social Issues. Catherine Collins, ed. Pp 36-42. Westport: Praeger Publishers. (2) Daly, Bobby and Olufunmilayo I. Olopade (2015). A Perfect Storm: How Tumor Biology, Genomics, and Health Care Delivery Patterns Collide to Create a Racial Survival Disparity in Breast Cancer and Proposed Interventions for Change. CA: A Cancer Journal for Clinicians. (3) Yedjou CG, Sims JN, Miele L, et al. Health and Racial Disparity in Breast Cancer. Adv Exp Med Biol. 2019;1152:31-49. doi:10.1007/978-3-030-20301-6_3

By Abigail Johnston When I was initially diagnosed with breast cancer in 2017, we thought I was Stage II. In light of that information, which we now know was erroneous, I chose to do a lumpectomy and once the tumors were removed, my doctor recommended that we have them tested to see if chemotherapy was right for me. My mother, at that time, was a 14 year breast cancer survivor and so this was news to all of us. As soon as my doctor suggested it, I did some research. I discovered that the Oncotype Dx test providers a breast reoccurrence score. They explain it this way on their website: “The Oncotype DX Breast Recurrence Score test provides a genomic-based, comprehensive, individualized risk assessment for early-stage invasive breast cancer in adjuvant and neoadjuvant settings. “ This score is recognized now as the standard of care by American Society of Clinical Oncology (ASCO®), the National Comprehensive Cancer Network (NCCN®), the St. Gallen Consensus panel, the National Institute for Health Care Excellence (NICE), the European Society for Medical Oncology (ESMO) and the German Association of Gynecological Oncology (AGO). That’s a lot of really smart and really dedicated people determining that this is a good test. What is the TAILORX study? Further, the testing was validated by the TAILORx study. The Oncotype dx website describes the study in this way: “The landmark TAILORx trial enrolled 10,273 patients from over 1,000 sites who were candidates for adjuvant chemotherapy as per NCCN Guidelines and monitored their 9-year outcomes. The trial investigated the clinical utility of Oncotype DX Breast Recurrence Score test to confidently predict the patient population who will substantially benefit from chemotherapy. Patients with Recurrence Score (RS) results 0-25 showed excellent outcomes when treated with endocrine therapy alone, while patients with RS results 26-100 are known to have significant chemotherapy benefit.2 TAILORx also showed that standard clinical risk features alone are not sufficient to determine chemotherapy benefit - often leading to overtreatment or undertreatment of patients. Only the Oncotype DX Breast Recurrence Score test provides clarity for adjuvant treatment decisions.” My then medical oncologist explained it this way – he said, “we have 20 years of tumors stored in a warehouse and we’ve studied their characteristics to create a database. This database then tells us the details of each person’s disease progression by looking at the genomics of each cell.” Basically, the history and experiences of more than twenty (20) years of the treatment of breast cancer gives us some indications of how cancer even now might behave and if chemo is indicated. The TAILORx trial was still going on at that time (in 2017) and the scores were validated even more after I underwent the testing. Patients who are diagnosed with early stage, ER+, Her2- breast cancer, whether node positive or negative, are eligible for this test. I checked all the boxes for this test and off my tumor went after they’d cut it out of me to be tested. Oncotype vs Mammoprint One difference between the oncotype dx testing and Mammaprint (their competitor) is that while Mammaprint gives yes or no answer to the likelihood of chemo helping, the Onctoype dx test provides a numerical value that is either in the definitely no help range, the gray area range, or the definitely yes chemo would help range. My then medical oncologist preferred the more detailed information of the Oncotype dx test because it allowed him to apply his experience and clinical judgment to the result. Oncoptype of 27 My result was 27, on the high end of the gray area. When we sat down with my then medical oncologist to discuss the next steps, he shared with us that in his experience, anyone with a score over 25 could benefit from chemo. His personal experience has been validated by the TAILORx trial. He left the decision to do or not to do chemo up to us, but the report we received showed us the difference in the danger of recurrence if I didn’t get chemo and if I did. The difference was over 10 percentage points and my husband and I decided that it would be best to proceed with chemo even though we’d been hoping to avoid it. And thank God we did. Starting Chemotherapy It was at my first chemo appointment that someone in my medical oncologist’s office, by mistake, checked the box for my tumor markers to be tested. Since the tumor markers came back extremely high, I underwent more testing and we discovered that I’d actually been Stage IV from the beginning and the pain/limp I had in my right leg was a 5cm tumor that was threatening to shatter my right femur. My then medical oncologist and my current medical oncologist have not been able to explain why the oncotype dx score wasn’t in the definitely would benefit from chemo range since the cancer had already spread through my blood to take up residence in my bones. That stumped the various tumor boards too. The bottom line is that no test is 100% accurate and specific to each individual person. Yet, the additional information provided by the tests we have available assist the doctors in making the best possible recommendations for the patient to then decide what is best for him/her. Knowledge truly is power and the more information, the more knowledge, the better each team can determine the best treatment for the individual patient. Check out the podcast with Abigail on Breast Cancer Conversations More articles by Abigail: Understanding Piqray Germline Mutations and the ATM Gene About the Author: In 2017, at the ripe old age of 38, while living in Orlando, Florida, I was diagnosed with Stage IV Metastatic Breast Cancer after feeling a lump in my left breast while tandem nursing my boys, who are now 7 and 5. The summer of 2017 was a rollercoaster of emotions as I faced four body and life-changing surgeries amidst chemo and radiation.  Once the whirlwind had settled a bit and I’d completed transitioning my clients and staff at my law firm to another law firm, my husband, two boys and I moved to Miami to live with my family.  Looking back, I’m astonished at how much has changed, how much we have overcome as a family, and how everyone has adjusted.  While I don’t actively practice law, I use my education and training in a variety of ways for the breast cancer community, advocating for patients and thrivers.  I have started my own non-profit, Connect IV Legal Services, where I recruit lawyers to do pro bono work for Stage IV patients. I’m also active in many local and national organizations, volunteering and adding my voice to educate and persuade others to connect with and help my community.  You can connect with me by checking out my blog, www.NoHalfMeasures.blog, or following me on Twitter, Instagram, Facebook, LinkedIn, or YouTube! - Abigail Johnston

How I Discovered Faith, True Beauty, and Confidence During and After Cancer By Karen Rice Without questioning, when going through a serious illness, you learn to know what faith truly is, along with finding the true meaning of beauty and how you really feel about yourself. I know this all too well because I have experienced many trials and tribulations in my life. Through it all, I gain strength that I never knew I had, and much more confidence in myself, which led me to loving myself all over again. I had a new beginning, all on my own. After going through so much in my life, things were going well, until it happened. I had a head-on collision with not only breast cancer, but colon cancer as well, and it changed my entire outlook on life. I thought I had endured rough years before but going through cancer was the rest of the iceberg. There is nothing like it. You wonder, what in life had you done so wrong to have this placed upon you. You began asking, why me. Yet through my tragedies and all that I had to endure, it all became an awakening for me, in which I received and gain all the strength and encouragement I needed to conquer. Through it all, not only did I find the true meaning of life, I found the true meaning of beauty. Through all the chemo, radiation, the pain I endured, I still felt beautiful. I found myself looking in the mirror even more during this time, because I thought what I was dealing with would change me drastically, but as I viewed the imperfections I now have to live with, over time it got better, and instead of feeling sorry for myself, I embrace it all; I'm still among the living, who am I to complain. Whether we are dealing with an illness or any other negative feelings about ourselves, our lives, and our bodies, we need to be our on-cheering section. Through all my mishaps, I still feel beautiful and it is real. I have come to realize that even going through such a dark time in my life, I still have a life to be lived, and I am going to live it to the fullest. When I think about the individuals that are no longer among us due to such a horrific disease, I'm truly grateful, and I will no longer take my life for granted, life is precious, and we don't realize that, until we come close to losing it. When I think of the “gift of life” that was given to me twice over, I knew I did not have a moment to waste. I would never say having or going through cancer is a gift, surviving it, receiving a second and third chance at life, is the gift. Yet, through it all, I did not allow the disease to take away who I am, or what I stand for. I am a survivor, as well as an example to show that it can happen, and that I can go on and look and feel just as beautiful, inside, and out, and it shines brighter. Yet through my tragedies and all that I had to endure, I received and gain all the strength and encouragement I needed to conquer. I will say, that the areas of my body that was interrupted, will be a constant reminder I had cancer, and at times, it does bother me, I'm human, but within a moment or two, I look past it, because those areas could be covered up. True beauty is within and when you feel beautiful on the inside, it shows so clearly on the outside. Just because I had cancer, does not mean cancer had me. We as women should never allow anything, or any circumstance to steal our joy, nor our self-esteem. And I know with cancer, many times you are too weak to even think about your looks, because you're not always feeling your best, believe me, I know; but sometimes you must try a little bit, and fight past it and keep living. Through any tragedy, we are and always will be beautiful and unique! Women, we all know that our bodies take lickings, yet we keep on ticking. When I look back now and see how far I've came, I have to say, I thought right away that my cancer diagnoses was truly a death sentence, because you're not sure if you're going to make it or not. Cancer have taught me not to blink twice at life, my eyes are wide open, living life to the fullest. I also realized after surviving cancer both times, that I was about to face new beginnings, new hope, do and see more with a whole new prospective on life. I share my story with others hoping to make a positive impact on someone who is ill or otherwise, where they can proceed life in a whole new way. I am 63yrs of age now, and I am cherishing each day, each moment, and through it all, I feel that I am still at my best. I am confident with myself, as well as grateful. I am starting over, doing things I should have done before cancer. One day, after one of the many surgeries I had during my breast cancer period, and I could remember it as if it was yesterday, I experienced something so real, so peaceful, something of a miracle, that I had to write it down. I turned that experience into a poem, and I called it “Peace”. I took that poem, along with many others I had written, writing had become therapy for me. I am hoping that anyone who may have the opportunity to read my poems, get out of them, what I placed in them, they are as real as any could ever be. My most recent published book is titled, “Cancer, Yet Cancer Again, but I will not Die, before I'm Dead”. I titled it that, because I truly feel that you should not stop living, because you have cancer, and that is exactly what I almost did, when I heard the word cancer. I am a realist, a regular everyday woman, who have overcome many obstacles, which took me to writing, trying to produce inspirational stories. If I had not gone through all that I did, I would have never anticipated such. The scars and mishaps, that are now attached to my body, due to cancer, are just that, and they are symbols for someone else inspiration and hope. I am thankful, because if I had not struggled, I would not have found my true strengths. I am a true example that you can survive cancer, not once, but twice, providing you get to it in time. I am not saying all will be easy, I am not saying all will survive it, what I am saying, is to have faith, fight with all you have, then hold on. I honestly believe, when and if you survive a horrific tragedy or a horrible disease such as cancer, it is for a reason. You have a purpose, and through that purpose, faith, compassion and strength, true beauty is born.

By Rebecca Santos I never thought I'd be diagnosed with breast cancer. And why should I? I'm 27. I have no family history. I'm not a carrier for the BRCA genes. I'm healthy and active. But still, here I am. I hope to be a voice that raises awareness that breast cancer can happen to healthy young women too! This year has already had so many surprises, but breast cancer has been the most challenging surprise yet. I'm a Latina first generation college grad who got accepted into medical school in February, got engaged in March, and to my surprise, was diagnosed with Stage 0 Breast Cancer (DCIS) May 27, 2020. While it was hard to process my cancer diagnosis, I was not surprised because I had spent a year having my symptoms being dismissed because of my age, health, and family history. My symptoms on my left breast: During the first six months, I had a large mass on my lower left breast that was so painful, I had to stop wearing bras. I had a scab with discharge coming out of it, sometimes yellowish-clear and other times red. I was told it was most likely an abscess and was given medication, but my symptoms never went away. I also felt a piercing pain coming through to my nipple and my left breast was sensitive to touch. Telling my family and friends that I had cancer was difficult because I didn’t want to burden them with fear or worry. Everyone cried, but they were all supportive and positive that I’d get through this. Losing my breast wasn't as difficult to process as having to lose one nipple (TMI), and having to explain that to family/friends along with why I chose to remove both breasts...but I focus on the positives and what matters is that I am alive and well! I cannot stress the importance of getting a second opinion! Mainly because you want to be confident in and comfortable with the surgeon who is  doing one of your most life-altering surgeries. My first breast surgeon gave me the news that I had cancer and the choice to keep my “healthy” breast. They didn’t explain my condition or their plan of action the way that I expected. In fact, the 8 minutes I sat with them was not enough time to explain very much at all about anything. As a result, I went for a second opinion and it was a completely different experience. This breast surgeon spent over an hour explaining to my family and I the type of breast cancer I had and what it meant, gave us a detailed course of action, pamphlets with information, and was empathetic that I had to face this at such a young age. I already had my mind made up to have a double mastectomy and my new breast surgeon agreed that it was best for me because although I only had cancer in one breast, there was no guarantee that in the future I wouldn’t get cancer in my other. Had I kept my "healthy" breast, I would have had to take a medication called Tamoxifen, which has a very extensive list of negative side effects. (Disclaimer: according to my oncologist, I was not a candidate for this medication because my cancer was not genetic and both breasts were removed, so there would be no benefits for me.) Lastly, I'd live a life of mammograms and screenings every six months for the rest of my life! Not to mention, I'd live in fear and worry of getting breast cancer again. Almost three weeks after my diagnosis, I had a double mastectomy and expanders put in, on June 15, 2020. While my breast cancer was Stage 0 (DCIS), my cancer cells were grade three (cancer cells that look abnormal and may grow or spread more aggressively). While I was told I would not need chemotherapy once they confirmed that the cancer had not yet developed into invasive cancer, I was told that I may need radiation. Now with medical school starting so soon, I had to discuss all of the what-if’s with my team of doctors and began to overthink and fear the possibility that I’d have to miss a semester of medical school or possibly have to delay my start for another year. Now that the cancer is out, the chances of cancer reoccurring are extremely low and the negative long term side effects of radiation are not worth it in my case. I decided that I wouldn’t let any of this stop me from achieving my dream of becoming a doctor and due to COVID-19, my medical school classes will start online, so not only will I get to stay home and fully recover, I won’t miss a day of medical school! It's not how I imagined starting medical school, but I've seen God's hand through all of this and know that He'll be glorified! I hope to be a voice that raises awareness that breast cancer can happen to healthy young women too! Awareness and early detection are so important, so never ignore your symptoms! Know your body, and if something’s off, GET IT CHECKED OUT!

By Kimberly Stephenson Background: There seems to be a gap in both access and treatment for black women when it comes to breast cancer treatment, and I am interested in understanding why that is. There are many reasons as to why I choose this topic; firstly, having a grandmother who has battled breast cancer twice. Sadly, it was not until I was well into adulthood that I truly understood her experience and her illness and the way in which my family, an immigrant family at that, viewed her treatment process. Secondly, interning for a few Breast Cancer advocacy groups has allowed me to push aside my cultural perception of cancer and illness, and give access to the more realistic and honest approach to it. In this 3-part series (Screening, Diagnosis/Treatment, and Survivorship), I aim to guide you through the screening process all the way to survivorship, and the barriers that black women may encounter when diagnoses with Breast Cancer. SCREENING In Part I of Kimberly’s Korner, we are talking Disparities in Breast Cancer Screening. Breast cancer currently affects more than 1 in 10 women worldwide. The chances of a female being diagnosed with breast cancer during her lifetime has significantly increased from 1 in 11 women in 1975 to 1 in 8 women[1]. Fortunately, the mortality rate from breast cancer has decreased in recent years due to increased emphasis on early detection and more effective treatments. Although the mortality rates have declined in some ethnic populations, the overall cancer incidence among African American and Hispanic population has continued to grow[2]. Much of the contemporary understandings of access and treatment of breast cancer has been through analyses of predominantly white, middle-class women. Women of color, specifically black women, are rarely studied as social entities in and of themselves. And yet we know that race, social class, ethnicity, gender, sex, religious affiliation and more collectively shape differences in a breast cancer patient’s experience of the healthcare system. No two breast cancer stories are identical, but for reasons, which I will explain in this series, there are gaps in both access and treatment for communities of color. Disparities in screening mammography are decreasing among medically underserved populations but still persist among racial/ethnic minorities and low-income women. There are a host of differences in experiences and lifestyle that put African American women at greater risk to have a deadly more advanced stage of cancer, and in many healthcare systems those unique factors go unnoticed. According to a 2015 study done by the American Cancer Association, “advances in diagnosis and treatment that have sharply improved survival rates from breast cancer and saved countless lives have largely bypassed African American women”[3]. No matter what the measure is, African American women are at a substantial disadvantage when dealing with breast cancer. Mammography screening is important for all women, regardless of their race/ethnicity or their risk of breast cancer. Along with follow-up tests, and treatment if diagnosed, mammography can reduce the chance of dying from breast cancer. However, Black women are often diagnosed at a young age when the disease tends to have the worse prognosis. The racial disparities gap in breast cancer diagnosis, mortality, and survival have continued to widen in the U.S. between White women and Women of color. For example, between 2008 and 2012, the median age for women diagnosed with breast cancer in the U.S. was 61 years. The median age was lower for Black women (58 years) than white women (62 years). Also, during that same period, breast cancer mortality rates were almost 43% higher in Black women than white women. The median breast cancer death age for all women was 68 years, but 69 years for white women, and 62 years for Black women[4]. So, in most cases Black women are diagnosed earlier and die earlier from breast cancer. Meanwhile, incidence and death rates for breast cancer are lower among women of other racial and ethnic groups than among non-Hispanic White and Black women. Asian/Pacific Islander women have the lowest incidence and death rates. But what are the actual reasons behind the disparities behind breast cancer screenings among racial and ethnic groups? Whereas common patient-related obstacles to breast cancer screening include perceptions of mammograms (being seen as painful) and fear of negative or unreliable results, communities of color face different ones. Factors like[5]: (1) low socioeconomic status; (2) specific biological characteristics of the tumor...; (3) younger age at diagnosis (younger than 45); (4) multiple coexisting medical conditions, particularly for older women; (5) delay in diagnosis and treatment; (6) treatment differences; and (7) differences in access to early detection and prompt treatment Even with free or low-cost screenings, African American women partake in screening programs at lower rates than their white counterparts. And now, with the incidence rate leveling out between both African American women and white women, it is even more important to recognize the perceptual and motivational factors that dissuade an African American woman to go in for a screening. It is interesting to compare the two perspectives; on one hand white women are not participating, or hesitate to participate in, breast cancer screenings for reasons that are seemingly medical or biological. Whereas, women of color tend to stray away from breast cancer screenings because of more cultural and relational reasons. The fifth factor, delay in diagnosis and treatment, will be discussed in Part II of this series. It is also the leading cause for Black Women being the number one group with advanced stage cancer upon first observance. All the above factors are some reasons why communities of color are, by and large, at a disproportionately disadvantaged stance when dealing with breast cancer from screening to survivorship. [1],[2] Yedjou CG, Sims JN, Miele L, et al. Health and Racial Disparity in Breast Cancer. Adv Exp Med Biol. 2019;1152:31-49. doi:10.1007/978-3-030-20301-6_3 [3] https://ww5.komen.org/BreastCancer/DisparitiesInBreastCancerScreening.html [4] Williams F, Thompson E. Disparities in Breast Cancer Stage at Diagnosis: Importance of Race, Poverty, and Age. J Health Dispar Res Pract. 2017;10(3):34-45. [5] Bradley, Patricia K. (2006). Breast Cancer in African American Women. In African American Women’s Health and Social Issues. Catherine Collins, ed. Pp 36-42. Westport: Praeger Publishers. About the Author: Kimberly Stephenson is a MPH Candidate at Boston University School of Public Health studying Health Communication and Promotion with an concentration in Maternal and Child Health. Kimberly currently works at BMCHP HealthNet Plan as a Senior LTSS Coordinator and will be joining SurvivingBreastCancer.org as the Marketing and Communication Intern. Kimberly has worked for other Breast Cancer Foundations in the past and is passionate about the health disparities among women and minority populations both globally and domestically. Kimberly was born on the small island of Dominica in the West Indies and enjoys travelling, gardening and is an avid foodie!

By Andrea Magni www.diverightincoach.com acjmagni@gmail.com I am a master of reframing … Reframing is an important skill as it takes you from a place of zero choice to being the master of your own destiny. There is a legend that Amazonian women would remove their breasts to make them a better archer and warrior. It isn’t true and yet for some breast cancer survivors it is: removing their breasts makes them much more able to fight and live on. As we navigate our treatments there are some well-meaning people who will refer to our breast surgery as a “boob job” or they’ll comment on how sore their boob job was when trying to let you know they “understand.” Our Breast Cancer survivor group meets once a week and we have no agenda. One week I discussed the fact that breast surgery was an amputation and it resonated so deeply with everyone. When I had my double mastectomy they hollowed out my body from one rib cage and armpit to the other. All the flesh under my skin was removed. I had implants placed over my pec minor muscle and under the pec major muscle and stitched into place. This was not an augmentation or “boob job”. My breasts have changed so much over my life, from pre-puberty, adolescence, young adult, overweight, pregnant, breast feeding, and after. When I learned I had breast cancer and had opted to have a double mastectomy I grieved. I grieved for the loss of naiveté and the innocence of life. I was not sure then if my cancer had spread, all I knew was I wanted to take the most extreme action. My 2.0s as I affectionately call the upgrade (only an upgrade in that they’re not trying to kill me), are big. 34DDs. I did not ask for them to be this size. The surgeon made her mind up while I was on the table. I believe she could have gone smaller but she looked at my almost 6 foot frame and thought I “could handle the scale”. There are some downsides to this: tops do not fit like they used to. The size makes them heavy. None of my old bras fitted and I have to wear bras with serious construction permits and broader straps. There is a reason the DD’s have special sections in the bra store. My breasts do not mold into the bra – the bra has to fit perfectly and even then after several hours the implant squashes my skin into the bra frame. I was hoping to be able to go bra free every now and then and this is not really possible. They are simply too large. Thankfully Sports tops are helpful. The positives still outweigh the negatives: I have breasts, they do have feeling (and this is wonderful), I did get some new lingerie, they allow me to talk about breast cancer in a refreshing way. I love the 2.0s very much. Best 2.0 moment: a few weeks after surgery we were staying at my Dad’s house and he was reading the kids and I a bedtime story. My daughter was tucked up next to me and leaned in, put her head on my chest, she looked up and said “mommy does this hurt?” I pulled her closer and said “no, it feels wonderful”. Second best 2.0 moment is how good they look in a halter neck bikini! See? Silver lining! What do you want to see differently in your world? Maybe I can help with perspective and reframing. Reframing puts the responsibility of choice back in your corner. For example: “my doctor says I have to exercise or I will have a heart attack. So I guess I had better go to gym.” Or you could take ownership of the idea and say “I want to be well and make better choices for my body. I want to go to gym”. Coaching to reframe is a powerful cognitive tool that helps develop perspectives that better serve your goals. www.diverightincoach.com acjmagni@gmail.com

By Amanda Hulton Diagnosed age 37 Stage 3 Hormone Positive HER2 Negative Working full time, exercising regularly, lots of socializing, mom of 2 boys ages 7 and 10, 13 years married to my high school sweetheart and cancer! It was the day after trick or treating with my kids, doing all things a 37-year-old Mom would be doing and that phone call with the words “You have breast cancer”. We all are only one moment away from our lives being forever changed and this was mine. A year before my own diagnosis my Mom had completed genetic testing and was BRCA2 positive, we have a family history of breast, ovarian and pancreatic cancer. Her and I met with a breast surgeon to discuss her preventative double mastectomy. I remember listening to my Mom's questions, hearing about the procedure and wondering what I would do if it was me. She was nearing 62 and I was 37, would that make a difference? Little did I know at that time I already had cancer and I too would test positive for BRCA2. Cancer does not care you are a young mom, working, a wife, a sister, a friend, a daughter and healthy otherwise. My treatment plan included chemotherapy, surgery, radiation, salpingo-oopherectomy and hormone blockers for 10 years. Sounds good right? I had an aggressive tumor that spread to my lymph nodes and I was going to be starting chemotherapy in 3 weeks. I was set up for 8 rounds every 2 weeks so long as I could handle it. Well, I almost couldn’t, that was the toughest 4 months of my life. I had a picc line, showering was not normal, I slept for days, I was dehydrated, puffy from meds, allergic to the infusions, allergic to the tape, had no hair and was gaining weight and feeling so far from what I felt only one month earlier. Two of the things I struggled the most with and stressed about in the early days of my diagnosis was losing my hair and how having cancer was going to affect my marriage. In the early days I googled for hours, all day, all night looking up how long before hair grows back, styles for short hair, timelines for re-growth and products to help speed up the process. Chemo day 17… just as I was told I had my head shaved. I still get teary remembering this moment. I now not only felt sick, I looked sick and I didn’t look like the girl I had known for 37 years. Who was this person staring back at me? I got a wig right away; I called her my lifeline. Once I had it, I wore it ALL. THE. TIME. It made me feel confident to leave my house, to have visitors, to go to my kids’ school and sports. I even wore it down a waterslide just so I could live life with my kids. Coping with Chemo: ♥ Stay hydrated ♥ Sleep ♥ Eat small meals ♥ Get dressed, put on some makeup on the days you feel well ♥ Ask for meds if you feel sick or unwell ♥ Call if you are worried ♥ Get a wig and one you feel good in ♥ Buy pretty hats, scarves and experience with them ♥ Walk even 5 min on days you can Marriage… This was also a big concern of mine. I read so many heartbreaking stories and equally as many heartwarming stories. I wondered where we would fall. My husband stepped up, he was now a single parent, working full time, full time caregiver, cleaner, chef and everything else. He ROCKED it. I have so much respect for him and that he too was going through his own worries and unknowns and continued to keep us afloat. We are going to be married 14 years this month and I look at him with so much love, my heart could burst. I wish I hadn’t wasted so many hours worrying and had a little faith. With being BRCA2 positive I was scheduled for a double mastectomy and felt it was the only option. What was troubling was my decision to have reconstruction, this was one decision I had to own. I was not supported by my radiation oncologist to have implants; this created a lot of tears and fears. However, my heart of hearts was that I wanted to wake up from surgery with breasts. I needed this, this was for me and my overall wellbeing. I considered all options and being that I would require radiation did not take this decision lightly. I went ahead with implants over the muscle and am proud of myself for standing my ground on what I wanted and in this case, needed. Recovery from a double mastectomy looked like this: ♥ Sleeping in a recliner for 3 plus weeks, ♥ Never missing the next dose of pain killers, ♥ Sleeping, ♥ Adjusting to 5 drains hanging from my body for 2 weeks, ♥ Scars across each of my breasts, ♥ Swelling, ♥ Watching for bruising ♥ Arm reach being no more then inches from my body ♥ Post-surgery exercises I healed well and was off pain killers within 10 days. I transitioned to my bed around week 4, sleeping on a wedge to keep me upright and pillows among pillows. It felt like I barely recovered from one treatment and was prepping for the next. My pathology showed 3 of 11 lymph nodes positive and my oncologist was now starting me on tamoxifen and zoladex immediately. I was getting ready for radiation; I would have 25 rounds. I wore a bolus for the last part of each treatment, this helped the radiation be closer to the top of my skin which would cause more burns. I also was being radiated on my left side and so I had to hold my breath putting space between the radiation and my heart. I almost got through all 25 rounds with very little reaction, but on day 25 my skin started to break, I was not prepared for the next 3 weeks as the burns got worse every day. I peeled from the top of my armpit across my breast and underneath. I got an infection that had to be treated. I didn’t feel supported through this time, no doctor visits, no one looking at my skin, just me trying to play nurse with a burnt body. It was summer and I missed out on pools, lakes, swimming and stayed indoors to stay cool and avoid the sun. Again, mentally it was just as tough as it was physically. Coping with Radiation: ♥ Buy non adhesive cloths to cover when skin breaks, will help peeling and sticking to clothes. ♥ After showering leave affected area under arm wet, this will allow you to get dressed with it being a bit slippery and not sticking. ♥ Air it out as much as you possible can. ♥ Use polysporin plus pain when skin breaks to help prevent infection and reduce pain. ♥ Moisturize constantly, all throughout treatment and do both breasts this will help reduce scars. ♥ Avoid sun. ♥ Advil helped with inflammation and pain. ♥ Where t-shirts that are snug and create a barrier between your arm and body. ♥ Drink lots of water. ♥ Rest So, here’s where things change. I am all done chemotherapy, surgery, reconstruction, radiation and am 4 months into hormone blockers and ovary suppression. I am struggling, I feel shocked what just happened. Emotionally and mentally I am having a hard time. Why? When I should be celebrating, I am done treatment. But I wasn’t I didn’t know how to feel and was re-playing the last 10 months over and over in my head. I started to see a social worker who helped me navigate these feelings and once she labelled them as grief, the loss of my previous life, the changes to my body and mind. I started to recognize that was exactly what I was experiencing. I continued seeking support for 6 months. I worked through a lot of feelings, it felt like I just woke up to realizing I had cancer and what I experienced. I slowly am still working on this; I am prioritizing self-care and it looks like this: ♥Yoga ♥Meditation ♥Reading ♥Saying No ♥Saying Yes ♥Slowing down I was a fairly private person most of my life and once I knew I had cancer I started to open up a bit more. It was hard to say the words “I have breast cancer”. Managing all the reactions, tears, fears and “you will be fine’s” was a challenge. As time went on, I did create a private group on social media where I would post updates, it was an online journal and served me well. I look back somedays and am starting to not recognize that girl who lived in a world of unknowns. I was supported by colleagues, friends and family and that felt good. It was close to my one-year anniversary before I made it Facebook official with what I had been going through. It was freeing, I felt a weight off my shoulders. I didn’t need to be embarrassed or ashamed of my diagnosis. I was fighting for my life. During this time, I had a salpingo-oopherectomy (tubes and ovaries removed). I was immediately into surgical menopause. SOOO HOT! I am finding this difficult even 6 months into it, finding ways to cope with a 39-year-old that feels 90. I have always been one to find ways to continue living, I don’t want to be defined by cancer and so I got a portable battery-operated fan, I have stopped drinking alcohol and with intermittent fasting find I have lessened these side effects. Coping with menopause: ♥ Personal fan ♥ Limit or avoid alcohol and caffeine ♥ Regular sleep ♥ Dress in layers ♥ Mild anti-depressant for night sweats and sleeping ♥ Keep hydrated ♥ Yoga ♥ Short walks I am now back working full time, managing the fatigue by taking regular breaks and not over scheduling my days off. Being okay with an untidy house somedays and choosing making memories as often as I can. On my 39th birthday I decided I was ready to help others; I launched my blog BreastCancerBeyond.com. I want to share the “real” story and inspire other women who are diagnosed. I have a whole new perspective, I see things I never saw before, I hear things I never heard before and I am looking at a world I didn’t know existed. I am proud of my journey; of my soul and the way I chose positivity. We control our minds it is not the other way around. A day in the life of a survivor is still new to me, I sometimes take a double take at my scars and am proud of my body for fighting along with me. I am embracing the new hair, being playful with my looks and appreciating every strand. I worry about unknowns and my kids and husband, and so I don’t sit on the beach watching them swim. Get in the water, swim, splash and laugh. All we have are memories, remember we are all only one moment away from our lives being forever changed. We are stronger together. Be kind to yourself, you are doing the absolute best you can in this very moment.

By Rachael Curry What is the TAILORx trial? You may recall when the primary results of the TAILORx study were first released. About two years ago, New England Journal of Medicine published the following, which SBC covered in a blog post: “The Oncotype DX Breast Recurrence Score® Test Definitively Identifies the 70% of Women with Early-stage Breast Cancer Who Receive No Benefit from Chemotherapy, and the 30% of Women for Whom Chemotherapy Benefit Can be Life-saving.” This news was groundbreaking, and very positive! But what exactly does it mean? As the study is still continuing, let’s dive in. TAILORx, the “Trial Assigning Individualized Options for Treatment (Rx),” first began in March of 2006. Recruiting over 10,000 individuals with breast cancer, it sought to answer the question: Is hormone therapy as a singular treatment inferior to both hormone therapy and chemotherapy in combination? For some breast cancer patients, the course of treatment was already relatively straightforward. Those who were considered very low risk were often referred to only hormone therapy, while those who were considered very high risk were prescribed both hormone therapy and chemotherapy in combination. But what about those who were considered an intermediate risk? The treatment recommendations varied, lacking thorough data to support either avenue. Thus, began the TAILORx trial: to determine the most effective personalized treatment course for individuals with the most common type of breast cancer, HR positive, HER-2 negative, node-negative breast cancer. The goal was to provide clinicians with the research to supplement data-driven decision-making regarding individualized treatment courses. This study is supported by the National Cancer Institute (NCI) and led by the ECOG-ACRIN Cancer Research Group. It is scheduled for completion in 2030. What is HR positive, HER-2 negative, node-negative breast cancer? The individuals enrolled in the TAILORx trial had varying risk levels of HR positive, HER-2 negative, axillary lymph node-negative breast cancer. HR positive stands for “hormone receptor positive.” This means that the cancer cells have lots of hormone receptors on them, as opposed to HR negative cells, which have little to no hormone receptors. These receptors allow for the hormones estrogen and progesterone to bind to the cancer cells, which promotes growth. Therefore, HR positive breast cancer has more rapid growth of cancerous cells than HR negative. About 70-80% of all breast cancers are HR positive. HER-2 stands for “human epidermal growth factor receptor 2.” HER-2 is also a receptor, however, it is present on all cells, even healthy ones. The difference is that when cancer cells are HER-2 positive, there is an abnormally large number of receptors present, which promotes rapid growth of cancer cells. Thus, HER-2 positive breast cancer is more likely to metastasize (or spread quickly throughout the body). In this case HER-2 negative means that there are little to no HER-2 receptors present on the breast cancer cells. Finally, node-negative cancer means that the cancer cells have not spread to the surrounding lymph nodes. What is an Oncotype DX Tumor Recurrence Score? When enrolled in the study, the breast cancer patients had their risk level determined on a scale called the Oncotype DX Tumor Recurrence Score. Essentially, this score ranked the risk on a scale of 0-100. Low risk was considered an approximate score of 0-10, intermediate risk 11-25, and high risk 26 or above. Certain providers, however, evaluate the scores on based on slightly different criteria. Therefore, the ranges are not exact, and each individual’s score and risk level should be determined with their provider. Not all providers choose to follow the risk scale when determining treatment. Further details on how scores are evaluated can be found in the previous SurvivingBreastCancer.org blog post, Oncotype DX Score. What are the findings of the TAILORx trial? Although the TAILORx trial is scheduled to finish in 2030, initial findings have been distributed. Primarily, researchers have found that there is no benefit from chemotherapy for 70% of breast cancer patients with an intermediate risk level on the Oncotype DX scale. In these cases, hormone therapy alone was just as effective as hormone therapy along with chemotherapy. This was determined by comparison of the experimental group of intermediate risk patients, who underwent both hormone therapy and chemotherapy, and the control group of intermediate risk patients, who received only hormone therapy. In the end, both groups showed no improvement in both survival rate and recurrence rate for having undergone additional chemotherapy. This data will be used to guide clinicians when making decisions about the course of treatment for intermediate risk breast cancer patients with HR positive, HER-2 negative, node-negative cancer. Conclusion Studies such as TAILORx are important because they strive to create data-driven personalized treatment for breast cancer patients. With many potential negative side effects from chemotherapy, it is crucial to know whether it is essential to recovery before deciding to undergo treatment. For those in the intermediate risk pool, the TAILORx research will create important leverage for both clinician decision-making and patient advocacy when determining courses of treatment in the future. Sources https://www.cancer.gov/news-events/press-releases/2018/tailorx-breast-cancer-chemotherapy https://ww5.komen.org/BreastCancer/TumorCharacteristics.html https://www.verywellhealth.com/her2-positive-vs-her2-negative-breast-cancer-4151792 https://clinicaltrials.gov/ct2/show/NCT00310180 About the Author: I am a 2019 graduate of the University of Michigan with a BA in Gender and Health, and a current MPH candidate at Boston University focusing on Healthcare Management. I am interested in the intersection of social identity and women’s reproductive health. In the future, I hope to help create a more accessible and equitable healthcare system for all women. During my free time, I enjoy painting, drawing, running, and hiking.

By Abigail Johnston Piqray (Alpelisib) was the first new drug application (NDA) for a new molecular entity approved under the Real-Time Oncology Review (RTOR) pilot program on May 24, 2019. This application also used the Assessment Aid (AAid). With these two pilot programs, the approval of Piqray came approximately three months ahead of the PDUFA VI deadline of August 18, 2019. What does that mean? Well, it means that the Food and Drug Administration (FDA) is taking very very seriously the need to fast track medication that looks promising and has both developed and implemented programs to make that happen. Piqray Approval Piqray was developed by Novartis and approved to be used in combination with fulvestrant for postmenopausal women, and men, with hormone receptor (HR)-positive, human epidermal growth factor receptor 2 (HER2)-negative, PIK3CA-mutated, advanced or metastatic breast cancer as detected by an FDA-approved test following progression on or after an endocrine-based regimen. The approval of Piqray was based on SOLAR-1 (NCT02437318), a phase 3, randomized, double-blind, placebo-controlled trial of Piqray plus fulvestrant versus placebo plus fulvestrant in 572 patients including postmenopausal women, and men, with HR-positive, HER2-negative, advanced or metastatic breast cancer whose disease had progressed or on or after receiving an aromatase inhibitor. The study demonstrated that the group receiving Piqray had eleven (11) more months before progression (PFS=progression free survival) versus the group not receiving Piqray and there is no information yet on long term or overall survival (OS). Piqray Side Effects The most common reported side effects on the Piqray plus fulvestrant arm were increased glucose, increased creatinine, diarrhea, rash, decreased lymphocyte count, increased gamma glutamyl transferase, nausea, increased alanine aminotransferase, fatigue, decreased hemoglobin, increased lipase, decreased appetite, stomatitis, vomiting, decreased weight, decreased calcium, decreased glucose, prolonged activated partial thromboplastin time (aPTT), and alopecia. Piqray Dosage The recommended Piqray dose is 300 mg (two 150 mg film-coated tablets) taken orally, once daily, with food. When given with Piqray, the recommended dose of fulvestrant is 500 mg administered intramuscularly on days 1, 15, and 29, and once monthly thereafter. Piqray Cost The price of Piqray tablets is $15,500, but the actual amount a patient will pay largely depends on their insurance plan. Depending on whether you have Commercial or Private Insurance, 83% of patients can expect their Piqray prescription to cost between $0-$10 dollars per month. If you have Medicare Part D coverage, 73% of Piqray prescriptions will cost between $0-$10 dollars per month. Lastly, under Medicaid coverage, 99% of patients can expect their Piqray prescriptions to cost $0-$10 dollars per month. Piqray Prescription Label Piqray Pioneers I’ve been taking Piqray since August of 2019 and I currently am one of the administrators of the Facebook group for people taking Piqray, which includes individuals with other kinds of cancer and people who just have the mutation, PIKC3A, with no cancer. The varying experiences have been fascinating, especially since we have many countries represented in the group as well. What I can tell you from the group is that Piqray has its pros and cons, just like any other cancer drug. For those of us who were prescribed Piqray as the first in our doctor’s offices, we call ourselves #PiqrayPioneers. Most of us had to figure out how to deal with the medication and its side effects largely on our own since most of the doctors weren’t fully equipped to help us and that’s been a gift to the patients newly taking Piqray. I’ve seen how patients help each other and how much we have to offer each other in this and other support groups. If you are a patient taking Piqray, I’ve included a link to the support group below. Piqray Side Effects Another interesting development is that managing the side effects of Piqray usually includes bringing new people onto the team who aren’t usually as fluent in cancers. Since Piqray often causes hyperglycemia (high sugar levels), most of the people taking Piqray need to see an endocrinologist. Endocrinologists are experts in helping patients manage their blood sugar; however, not usually in the context of cancer. Once we started hearing that the endocrinologists needed more training and information, the patient group turned to Novartis and asked for physician education to be developed for doctors other than just the medical oncologists. This is in progress. Piqray Life Style Changes Additionally, since diet changes are necessary (most of us on Piqray stick with a modified keto diet) and weight changes can be significant on Piqray, engaging a nutritionist who is skilled in working with cancer patients has also been a key addition to the team. For me, since both Piqray and the medication I take to help with my blood sugar, Jardiance, causes weight loss, I’ve struggled with maintaining a healthy weight. Talking with my endocrinologist and my new nutritionist has helped me adjust my caloric intake to address my weight loss. There are some additional studies looking at other medications in this class, but for now, Piqray is the only FDA approved medication to target the PIKC3A mutation. Here are some additional sources: See the Piqray FAQs Piqray Support Group: Join the closed Facebook Group and be sure to mention you hear about it from Survivingbreastcancer.org! View full prescribing information for PIQRAY. Guidance for Industry: Expedited Programs for Serious Conditions-Drugs and Biologics. About the Author: In 2017, at the ripe old age of 38, while living in Orlando, Florida, I was diagnosed with Stage IV Metastatic Breast Cancer after feeling a lump in my left breast while tandem nursing my boys, who are now 7 and 5. The summer of 2017 was a rollercoaster of emotions as I faced four body and life-changing surgeries amidst chemo and radiation.  Once the whirlwind had settled a bit and I’d completed transitioning my clients and staff at my law firm to another law firm, my husband, two boys and I moved to Miami to live with my family.  Looking back, I’m astonished at how much has changed, how much we have overcome as a family, and how everyone has adjusted.  While I don’t actively practice law, I use my education and training in a variety of ways for the breast cancer community, advocating for patients and thrivers.  I have started my own non-profit, Connect IV Legal Services, where I recruit lawyers to do pro bono work for Stage IV patients. I’m also active in many local and national organizations, volunteering and adding my voice to educate and persuade others to connect with and help my community.  You can connect with me by checking out my blog, www.NoHalfMeasures.blog, or following me on Twitter, Instagram, Facebook, LinkedIn, or YouTube! - Abigail Johnston

By Mary Ladd When I was diagnosed with triple negative breast cancer at age thirty-nine, people became needy and pushy, wanting me to help them feel better about my disease. I didn’t have the energy to answer so many questions. My solution? Email stories, medical stats and updates using my usual sarcasm and sass. I wrote things down so that I could document and process my emotions and experiences. I also realized chemo brain is real, and having a written record was necessary when I couldn’t remember vitals. From the comfort of my couch, I felt connected to the outside world, even if I missed the hustle bustle and normalcy of my pre-cancer life. With the support of writers such as Mary Roach, Daniel Handler, Robert Mailer Anderson and Vanessa Hua, I wrote my way through things like: Nursing a crush for my surgeon Digging poop out of my own body after days of constipation Little girls telling me to take off my wig (that’d be a no!) Searching for an end point. There isn’t an end point! Singing “Dildos Are Forever” under anesthesia in the surgery stadium I partnered with a friend, cartoonist Don Asmussen, creator of the San Francisco Chronicle feature "Bad Reporter." He was a cancer survivor at the time and had me giggling and spitting out my coffee as he made fun of me while sharing his own side effect-tales about losing his hair. We’d meet in a mall food court to talk about “The Wig Diaries” book project, and the result is an illustrated compilation of essays that tackles druggy wig shopping, going naked at the hot springs with a mangled body and only one nipple and the sorrow of hair loss and withered sexuality. Because I use humor, this is not Chicken Soup for the Cancer Soul. As I said goodbye to body parts, I fretted over finances while also debating if eating too much BBQ or wearing cheap and sparkly drugstore make-up contributed to my cancer. Bouts of middle of the night insomnia made me feel especially afraid. There was also the aching grief and guilt of mourning patients who were Stage Four. I sincerely wanted to take away their pain and disease. Cancer forced me to learn to sit still with this kind of terrible helplessness and discomfort. It was cathartic to lay it all out via my stories, while sharing helpful tips on what to say to someone with cancer. We don’t get enough practice using language about illness, death and grief, and it takes practice. I try to have compassion when folks screw up, and give me advice to drink more lemon water or ingest a lot of turmeric and brown rice. Yet many studies show that writing about thoughts and feelings in the face of unexpected life happenings such as cancer lowers anxiety and stress. Sign me up! Coronavirus remains incredibly challenging for many. Yet writing things down has been a great way to keep moving forward. When I teach writing classes, students enjoy using writing prompts, which are short bits of text used to kickstart our creativity. Once coronavirus started shutting many aspects of “normal” life, I went into research mode. So many of my friends were now being forced to face their fears and experiences in the same fashion I did with cancer. I decided to create a book called “Write it Down: Coronavirus Writing Prompts,” using 186 short writing exercises. Writers of all stripes can choose their own adventure. Some tips: At first, it may be tough and possibly surprising when certain thoughts and emotions surface. Write what you can. Keep the pen to the paper (or fingers on the keyboard) for five minutes. If you stumble, write a list of thoughts and ideas that you can come back to. There’s no need to fuss over spelling or word flow. Note any prompts we do not get to are for you to try out in your writing practice. Writing: You might find it helpful to write as if you are in conversation with a close friend, favorite teacher, or other trusted person. Describe how people move and talk, including posture, voice and/or mannerisms. What colors, textures, people and things are nearby? Colors and scents are especially evocative. Dig into these sample prompts from the book: What’s your secret weapon: Are you organized? Strong? Fierce? Forward-thinking? Smart? Calm? Hardworking? Funny? Describe the ways in which you’ve recently used this secret weapon. Write an underwater scene with a cast of marine-life characters. Make it a drama, romance, science fiction piece or something else. When’s the last time you had a great, rolling belly laugh? What happened? Write in detail about what you’ve learned about your roomies/family after being forced to spend way too much time together in close quarters. What are some things that annoy you? Could be loud chip-eating noises, 20-minute shower takers, or the not-so-mysterious way a certain someone leaves dirty dishes everywhere. If you live alone, examine the things you do that would annoy others, or create a cast that lives together in a large co-op, cramped apartment or other scenario. Writing has helped me realize how fragile, weird, sad and exciting life can be. The routine has now become celebrated. When I was bald, bloated and exhausted from cancer, I used to look out the window and assume everyone was having a wonderful time doing amazing fun things. Now I have to use my brain to remember some of the fun and amazing things we all used to do because those activities are on hold and things feel especially upside down. Mary Ladd teaches online writing classes at The Writers Grotto and has written for Playboy, Time Magazine and the San Francisco Chronicle. She collaborated with Anthony Bourdain on “No Reservations” and is the author of “Write it Down: Coronavirus Writing Prompts” and “The Wig Diaries.” Ladd plans dance parties for Bay Area Young Survivors (BAYS), a support group for young people living with breast cancer. You can find her upcoming events, classes and book information at maryladd.com. “Write it Down” can be purchased at Lulu.com, Barnes & Noble and as an e-book at Smashwords. “The Wig Diaries” is available at Green Apple Books and other bookstores, as well as on Amazon.

By Rachael Curry What is IDC? Invasive ductal carcinoma (IDC) is the most common type of breast cancer, accounting for 80% of all breast cancers in women and 90% in men. Yes, you read that correctly – 1% of men are diagnosed with breast cancer. Also called infiltrating ductal carcinoma, it refers to a type of cancer that has spread beyond the ducts, which carry milk from the breast lobules to the nipple. “Invasive” refers to this spread of the cancerous cells, while “ductal” refers to the origination of the cancer in the milk ducts, and “carcinoma” refers to a type of cancer that begins in the skin or protective tissues such as breast tissue. While IDC is most common in older women, especially those over the age of 55, it can also affect younger women and men. Like many forms of breast cancer, IDC often has no symptoms at first. However, signs might include: A lump in the breast or underarm, Skin irritation, pain, Redness or scaly texture on the breast and nipple, Unusual discharge from the nipple, or The nipple turning inwards. IDC is usually initially detected as a lump in a screening mammogram, which takes an x-ray picture of the breast. This then leads to a biopsy and other testing procedures to assess the size and spread of the tumor. Potential tests include CT scans (using multiple angles of x-rays to create cross-sectional imaging), PET scans (using imaging to visualize metabolic processing within the organs and tissues), MRI (using a magnetic field to create images of organs and tissues), bone scans (using nuclear imagine to detect the presence of metastatic cancer in bones), and chest x-rays. Invasive Ductal Carcinoma Prognosis So – is invasive ductal carcinoma “curable”? The linguistics of the word “curable” are not black and white. In this case, we will assume that “curable” means that there is no remaining evidence of disease. The short answer, then, is that IDC can be curable with the correct treatment methods. Treatment will be determined based on the stage of IDC, which classifies the size and location of the cancerous cells. The provider will analyze the growth and spread of the lump throughout the body to determine this. IDC consists of four stages. Stage 1 means that the tumor is smaller than 2 centimeters in diameter and the breast cancer is contained to just the breast. Stage 2 is a smaller lump that has only spread to a few lymph nodes in the underarm area while Stages 3-4 refer to a larger lump that has spread to multiple lymph nodes or other organs. The 5-year survival rate of Localized IDC is 99% while Regional IDC is 86% and Distant IDC is 27%. With IDC, there are usually strong positive prognoses, although as with any medical procedure, it is impossible to guarantee a 100% success rate. How is IDC Treated? Treatments are classified as either local, meaning they only target one area of the body, or systemic, meaning they target the entire body – likely for a cancer that has spread and progressed to a further along stage. Local Treatments Local treatments include surgery and radiation therapy. Surgery is used to remove the breast tumor, which is sufficient if the cancer has not spread to the lymph nodes. Either a lumpectomy will remove the lump and a bit of surrounding tissue, or a mastectomy will remove part or all of the breast tissue. Radiation therapy directs rays of high energy on the breast to destroy any remaining cancerous cells after surgery. Systemic Treatments Systemic treatments include chemotherapy, hormonal therapy, and targeted therapy. Chemotherapy utilizes powerful medicine to destroy cancerous cells in the body by traveling throughout the bloodstream. Side effects are frequent since this also weakens healthy cells within the body. Hormonal therapy, also called anti-estrogen or endocrine therapy, is used to lower the amount of estrogen in the body. Because the hormone estrogen signals the growth of cancerous cells, this form of therapy can either destroy or block the hormonal receptors that create this signal. Targeted therapy similarly targets certain parts of cancerous cells to inhibit their growth. Conclusion The treatment method for IDC will be determined between yourself and your provider. Regardless of the treatment selected for your personal circumstances, there is a largely positive outlook. Routine mammogram screenings are important to detect potential invasive ductal carcinoma early on when there may be no symptoms, and lead to prompt treatment initiation. Read more about breast cancer risk factors. https://www.hopkinsmedicine.org/breast_center/breast_cancers_other_conditions/invasive_ductal_carcinoma.html https://www.breastcancer.org/symptoms/types/idc https://www.webmd.com/breast-cancer/ductal-carcinoma-invasive-in-situ About the Author I am a 2019 graduate of the University of Michigan with a BA in Gender and Health, and a current MPH candidate at Boston University focusing in Healthcare Management. I am interested in the intersection of social identity and women’s reproductive health. In the future, I hope to help create a more accessible and equitable healthcare system for all women. During my free time, I enjoy painting, drawing, running, and hiking.

By Abigail Johnston Breast Cancer Definitions Once I was told that I have Stage IV Metastatic Breast Cancer in the Spring of 2017, I started a notebook with terms and definitions.  I’ve gone through several of them in the last three (3) years and I’m always adding to the basic definitions that I found initially.  I style myself a professional patient and part of that status is that I’ve literally had to learn a new language.  My old skills of reading and analyzing often hamper me now; wordsmithing is literally my thing and that doesn’t work well at all when reading medical reports! Germline vs Somatic Mutations Two terms that I’ve had to learn quite a bit about are “Germline Mutations” and “Somatic mutations,” as well as the different tests to determine each.  Why do we need to know these things?  I’m glad you are here to learn a little bit about why knowing if you have one or more of one or both of these types of mutations is important. Genetic Testing When I was initially diagnosed with breast cancer, my doctor performed a whole lot of tests.  It was a crazy whirlwind and I had a limited understanding of why she was performing most the tests because I blindly followed her lead.  I think a lot of us are in that boat at the beginning or at least less able to process and evaluate the barrage of information coming towards us.  Once the dust started to settle and I actually received all of the paperwork that showed what was going on, I spent a lot of time reading each word.  I discovered that one of the tests my doctor performed was a genetic test. A genetic test is “the study of a person’s DNA in order to identify genetic differences or susceptibility to particular diseases or abnormalities.”  My genetic test involved a phlebotomist drawing a vial of blood and then waiting on the result.  We received a really thick, detailed report from Myriad Genetics, the company my doctor selected.  That report revealed that there was a mutation that I received from my mother, the ATM mutation, and that this mutation was actionable (more about genetic testing on our podcast). Germ line (sometimes one word, sometimes two) means “A series of germ cells each descended or developed from earlier cells in the series, regarded as continuing through successive generations of an organism.”  Since we get half of our DNA from our biological mothers and half from our biological fathers, our literal cells are derived 100% from theirs.  We discovered that the ATM mutation is quite prevalent in my mother’s family and each of us who has tested positive has had to make hard choices as to how to deal with the genetic abnormality before or after a breast or prostate cancer diagnosis. One great resource for anyone who has hereditary cancer of any kind is FORCE, which stands for Facing Our Risk of Cancer Empowered.  From their website, the ATM Mutation is defined as “Inherited mutations in the ATM (Ataxia-Telangiesctasia mutated) gene are associated with increased risk of certain cancers.  People who inherit a mutated copy of ATM from one parent are at increased risk of female breast cancer (up to 52% lifetime risk), and possibly pancreatic, prostate and other cancers.  Ongoing research may identify other cancer risk, such prostate and pancreatic cancer in people with inherited ATM mutations.” A key point about selecting a genetic company is that it is a reputable lab who has the ability to ensure that your testing will be re-reviewed as new information comes out about mutations.  This field is ever changing and the labs are then required to send a letter to the patients when their testing is updated and new mutations are discovered.  Since precision medicine is the future, knowing exactly what can be targeted may mean the difference between life and death at some point.  None of the direct to consumer genetic testing companies (23&Me, Ancestry, Color, etc.) do this follow up and that could lead to a false sense of security. Once you know if there is a germline mutation, then what? At this point, there aren’t any specific medications for the ATM mutation, but there are for the BRCA mutations and many of the ongoing clinical studies contain different arms that are looking at the effect of each medication on different germline mutations.  The future is precision medicine and to get there, scientists need to know if cancer will behave differently when a germline mutation is present in the body. Additionally, knowing whether a mutation carries a risk of another type of cancer may change surveillance or timing of testing to ensure that no other cancer has begun to grow. Lastly, knowing that you carry a germline mutation then requires an analysis of whether you have a child who might be affected or whether you decide to have children at all or seek scientific intervention to prevent passing along a mutation. Another type of test that may be offered to you or you might want to ask about are genomic tests that look for somatic mutations in a resectable tumor.  See what I said about the different language?  I’ll break it down. Genomic Testing, in contrast to genetic testing is “relating to the haploid set of chromosomes in a gamete or microorganism, or the complete set of genes in a cell or organism.”   So, instead of looking at the similarities between a series of cells (genetic), genomic testing looks at the individual cells to examine why those cells are different from others.  For me, my genomic testing was done on my original tumor removed from my left breast through a lumpectomy since my metastasis are all inside my bones, which makes them inaccessible or not resectable (obtainable via surgery).  For someone with a tumor or met in the soft tissue like the lung or liver, a biopsy of that metastasis would give the most up to date information. While genetic testing is usually covered by insurance or provides generous assistance with co-pays, genomic testing is still not as prevalent. When I completed mine in 2018, it was through a trial at Memorial Sloan Kettering (MSK) and I had access to that trial because my cancer center in Miami has a partnership with MSK.  I have heard that obtaining insurance coverage for genomic testing is not as easy yet, but that it is getting easier, especially when understanding if there is a targetable mutation is becoming more key as more and more precise targets are approved by the FDA. Somatic means “of the body” in contrast to being of the mind and a somatic mutation is quite literally a mutation of the cells of the body.  These mutations are ones that the cancer cells have acquired through their growth and uncontrollably copying of themselves.  As the cells copy themselves over and over, some pieces of the DNA are lost, some are acquired and the cells continue to mutate.  Once a mutation has begin, it often continues through the rest of the copies and the thus, a target is created. For example, my genomic testing revealed five (5) mutations, all various combinations of letters and numbers.  My report told me that the only actionable mutation on the list was the PIK3CA mutation.  In May of 2019, the very first medication to target the PIK3CA mutation, Piqray (abelisib) was fast tracked by the FDA and when I had progression in August of 2019, I was able to get right on it.  Knowing that the genomic testing led directly to a medication that was available to me was truly a satisfying experience. As you can see from the above, I have benefitted from both genetic and genomic testing in that each has given me a different piece of the puzzle and informed the actions that I, my family, and my medical oncologist has taken.  For this reason, I often suggest to other patients with cancer that they get testing done to see if there are actionable results. However, one thing to consider is that it is still a possibility that no mutations will be found on either test.  I have known several friends who are in that very situation and it can be discouraging to go through the trouble of arranging and getting a test covered only to find out that the results are not helpful at that time.  There is always the chance that ongoing research would mean that further testing could be done on the same or an updated sample; however, understanding that the results may not result in actionable data is something to consider before walking down this road. About the Author: In 2017, at the ripe old age of 38, while living in Orlando, Florida, I was diagnosed with Stage IV Metastatic Breast Cancer after feeling a lump in my left breast while tandem nursing my boys, who are now 7 and 5. The summer of 2017 was a rollercoaster of emotions as I faced four body and life changing surgeries amidst chemo and radiation.  Once the whirlwind had settled a bit and I’d completed transitioning my clients and staff at my law firm to another law firm, my husband, two boys and I moved to Miami to live with my family.  Looking back, I’m astonished at how much has changed, how much we have overcome as a family, and how everyone has adjusted.  While I don’t actively practice law, I use my education and training in a variety of ways for the breast cancer community, advocating for patients and thrivers.  I have started my own non-profit, Connect IV Legal Services, where I recruit lawyers to do pro bono work for Stage IV patients. I’m also active in many local and national organizations, volunteering and adding my voice to educate and persuade others to connect with and help my community.  You can connect with me by checking out my blog, www.NoHalfMeasures.blog, or following me on Twitter, Instagram, Facebook, LinkedIn, or YouTube! - Abigail Johnston

By Jessica Wise Disclaimer: This post is not intended to be taken or received as nutritional advice nor is the author able to offer nutritional advice. Each patient who is interested in statements made herein should consult with a qualified medical professional to learn more. Soy foods are naturally cholesterol-free, low in saturated fat, and high in fiber. In many ways, soy foods are an excellent source of protein and a great alternative to red or processed meat; however, there is conflicting information regarding the potential effect of soy consumption on breast cancer development. While some experts emphasize the beneficial effects of soy foods, others believe soy may increase a person’s risk of developing breast cancer. Let us begin by understanding why this might be. Phytoestrogens and breast cancer Natural soy foods contain phytoestrogens, plant-based estrogen compounds. Since estrogen is linked to certain types of hormonal breast cancer, many individuals fear that soy can increase their risk for breast cancer development. There have been several research studies conducted to assess the association between soy consumption and breast cancer development; animal studies have primarily established a positive correlation between soy consumption and breast cancer, but human population studies have not produced this same result. Soy foods are a staple in traditional Asian diets, making the intake of soy foods across the lifespan of Asian men and women much higher than that of American men and women. Recent studies have tried to understand the potential effect of soy consumption on breast cancer development in Asian women, and the evidence does not indicate a detrimental effect. In fact, the evidence points to a beneficial effect: Consumption of soy foods may lead to a decreased risk of breast cancer among Asian and Asian American women. In the US, soy consumption often comes from soy additives in foods or processed soy foods. It is known that processed foods can increase a person’s risk for cancer, so perhaps we should focus on eating whole soy foods like edamame and tofu. For those of you who are concerned about eating soy foods and their risk of breast cancer development, then there is no need to add soy to your diet. Like any food, consuming soy in moderation is important. Here is a list of phytoestrogen foods that are healthy in the unprocessed state: · Tofu · Tempeh · Edamame · Linseed (flax) · Sesame seeds · Barley · Lentils · Alfalfa · Mung beans · Apples · Carrots References: Korde, L. A., Wu, A. H., Fears, T., Nomura, A. M. Y., West, D. W., Kolonel, L. N., Pike, M. C., Hoover, R. N., & Ziegler, R. G. (2006). Childhood soy intake and breast cancer risk in Asian-American women. Cancer Epidemiology and Prevention Biomarkers, 15(12 Supplement), B163–B163. Phytoestrogens: Benefits, risks, and food list. (n.d.). Retrieved June 11, 2020, from https://www.medicalnewstoday.com/articles/320630 Ziaei, S., & Halaby, R. (2017). Dietary Isoflavones and Breast Cancer Risk. Medicines, 4(2).

By Abigail Johnston Disclaimer: This post is not intended to be taken or received as medical advice nor is the author able to offer medical advice. Each patient who is interested in medication or statements made herein should consult with a qualified medical professional to learn more. Trodelvy Approval On April 22, 2020, the FDA approved sacituzumab govitecan-hziy (Trodelvy) for the treatment of adult patients with metastatic triple-negative breast cancer (mTNBC) who have received at least two prior therapies for metastatic disease, so it would be the third line of treatment for those living with mTNBC. Trodelvy (try saying that 5 times fast) is the first antibody-drug conjugate approved by the FDA specifically for metastatic triple-negative metastatic breast cancer. It is also the first FDA-approved anti–Trop-2 antibody-drug conjugate. If that sounds like another language, it really is. The bottom line is that this new medication represents a significant step forward in the treatment of mTNBC, a diagnosis that often carries a very grim prognosis and, until recently, has lagged behind the other subtypes in terms of available treatments outside of traditional chemotherapy. As of December 2020, Gilead released new data from the ASCENT trial that continues to show promising results of Trodelvy for patients with mTNBC. Gilead has submitted a Biologics License Application (sBLA) to the Food and Drug Administration (FDA) to receive full approval for Trodelvy as a treatment option for adult patients with mTNBC who have received at least two prior therapies. Trodelvy and Metastatic Triple-Negative Breast Cancer “Metastatic triple-negative breast cancer is an aggressive form of breast cancer with limited treatment options. Chemotherapy has been the mainstay of treatment for triple-negative breast cancer. The approval of sacituzumab govitecan-hziy represents a new targeted therapy for patients living with this aggressive malignancy,” said Richard Pazdur, MD, Director of the FDA’s Oncology Center of Excellence and Acting Director of the Office of Oncologic Diseases in the FDA’s Center for Drug Evaluation and Research. “There is intense interest in finding new medications to help treat metastatic triple-negative breast cancer. [This] approval provides patients who’ve already tried two prior therapies with a new option.” For more information from ASCO (American Society of Clinical Oncologists), you can read more here. ASCENT Trial The trial (ASCENT) that led to the approval by the FDA in May of 2020 enrolled 108 patients (a BIG thank you to those brave souls) who had undergone a range of 2-10 prior treatments for metastatic disease. The medication (10mg/kg) is an injection administered twice in a 21-day period. From my review of the study, “The overall response rate was 33.3% (95% confidence interval [CI] = 24.6%–43.1%), with a median duration of response of 7.7 months (95% CI = 4.9–10.8). Of the patients with a response to sacituzumab govitecan-hziy, 55.6% maintained their response for 6 or more months and 16.7% maintained their response for 12 or more months.” Trodelvy Side Effects The side effects are pretty similar to many other targeted therapy with 25% or more reporting nausea, neutropenia, diarrhea, fatigue, anemia, vomiting, alopecia, constipation, decreased appetite, rash, and abdominal pain. The worst side effects, which are included in the boxed warning are the risks for severe neutropenia and severe diarrhea. The confirmatory phase III ASCENT study was recently halted by the independent data safety monitoring committee because of the data that was already collected in light how well the Trodelvy appears to be working; however, access to Trodelvy may be contingent on the ASCENT study continuing to show the same data. This is an example of expedited approval prior to the conclusion of Phase III (the last phase) of the trial and represents the FDA’s commitment to expediting the approval process of medication that shows efficacy to the public. Ongoing monitoring of safety and the experiences of patients on the medication will be key to watch as more men and women are prescribed the medication and more endpoints are reviewed. One aspect of trials conducted in the US under the supervision of the FDA are those endpoints. Most trials look at Progression Free Survival (PFS), as was examined in ASCENT for Trodelvy. It could certainly be argued that having the approval expedited prior to the end of Phase III of the trial means we are missing key data. We are missing the Overall Survival (OS) data that patients are often very concerned about. At the same time, the medical professionals involved with the trial and the approval process deemed that patients having access to the medication in light of its niche and being the first in its class was more important than waiting on that data. The patients taking the medication as a last resort are certainly happy about that. Listen to our latest podcast featuring a lively discussion on Trodelvy and treatment options for metastatic breast cancer. For more information on TNBC, read an interview with Sara and Caitlin, two thrivers of SBC's community, here. About the Author: In 2017, at the ripe old age of 38, while living in Orlando, Florida, I was diagnosed with Stage IV Metastatic Breast Cancer after feeling a lump in my left breast while tandem nursing my boys, who are now 7 and 5. The summer of 2017 was a rollercoaster of emotions as I faced four body and life changing surgeries amidst chemo and radiation.  Once the whirlwind had settled a bit and I’d completed transitioning my clients and staff at my law firm to another law firm, my husband, two boys and I moved to Miami to live with my family.  Looking back, I’m astonished at how much has changed, how much we have overcome as a family, and how everyone has adjusted.  While I don’t actively practice law, I use my education and training in a variety of ways for the breast cancer community, advocating for patients and thrivers.  I have started my own non-profit, Connect IV Legal Services, where I recruit lawyers to do pro bono work for Stage IV patients. I’m also active in many local and national organizations, volunteering and adding my voice to educate and persuade others to connect with and help my community.  You can connect with me by checking out my blog, www.NoHalfMeasures.blog, or following me on Twitter, Instagram, Facebook, LinkedIn, or YouTube! - Abigail Johnston