By Heather Paganica “So often I measure my growth by how long my hair has gotten, but this journey has been so much more than my hair and I’m proud of me!” –– Heather Paganica I tell people that Thursday, October 20, 2022 was the worst day of my life, but then it all went uphill from there. Let me explain… The days following my diagnosis were a blur. I had gotten the phone call from the breast imaging office that Thursday, and he just told me that my results came back with cancer in all three areas biopsied. I didn’t know what to do. I remembered they told me on the phone that I should call my doctor’s office. At that point I was so shocked I thought, “What doctor?” I spoke to the PA at my gynecologist’s office about possible oncologists to meet with. I didn’t know WHO I was supposed to talk with . I didn’t know WHAT I was supposed to do. It was all very scary and confusing but I knew I wanted the cancer out of my body!  Someone gave me the number for Northwell Breast Cancer Nurse Navigators and I was put in contact with a woman named Jackie. Boy oh boy, was she down to earth and lovely. A beautiful breast cancer survivor with the same name as my co-worker who had battled breast cancer years earlier. I felt as though she had sent Jackie B. to me from Heaven. I ALREADY had an angel looking over me. Thank you Jackie! Thank you for the sign from above.   Jackie B. was one of MANY signs along this journey. She helped me find an oncologist. She gave me three names and showed me where I could learn about each doctor and even see a picture of each doctor. My gynecologist’s PA recommended another doctor. I made appointments with two of them.  Dr. Sylvia Alicia Reyes was the first oncologist I spoke to about my cancer. She is a surgical oncologist. I didn’t know there were different types. She explained my cancer to me with pictures, compassion and gentleness. Another angel sent from above. That first talk was HARD, but I was assured that I COULD and I WOULD beat this very aggressive cancer. I think of how far I’ve come from that day and I am AMAZED!  That word, AGGRESSIVE. It wasn’t until a long time after my diagnosis that I told my mom that my cancer was AGGRESSIVE. It was the first time she heard it. I had softened the hard stuff for her because I knew how hard this had to be for HER. I am a mother now and I can imagine how she felt as my mother, watching me go through this from so far away. (My mother lives in North Carolina and I am in New York.)  I know she’s proud of me, but she must have felt so helpless. I hate that she had to feel that way. I hated that so many people who love me felt helpless. I appreciate how much support and love I had and still have! Life went on for me. I was still a teacher.  After that dreadful Thursday, October 20, I took off the next day on Friday. On Saturday, I went to soccer with my son, Marcello. Then, on Sunday I took him to a birthday party for his friend Zachary. I knew Zachary’s mom had gone through breast cancer and survived. I contemplated telling her about my cancer, but it was too soon. I wasn’t ready, and I CERTAINLY wasn’t going to tell her at her son’s birthday party.  I remembered my principal telling me I would feel better once I had a plan of action with the doctor, but that doctor’s appointment hadn’t happened yet. All I knew was that I had cancer. Cancer. Such a scary word. A word that got easier for me to say after I had to tell Marcello the “name of my disease.” On November 4, I met Dr. Nouneh Janet Gostanian. It was my husband Rocco’s 48th birthday and here we sat to hear my fate. Dr. G was nothing short of amazing. She had gone over all of my paperwork BEFORE sitting down with us, so she wasn’t staring at a computer screen or papers in front of her – she was looking at us. She explained my cancer again and what her plan of attack was and why. THIS was the “plan” that my principal had told me would make me feel better. I fought back tears so hard. I just wanted them to cut off my boobs! I just wanted to yell that at her and everyone in the room. “JUST F*CKING CUT THEM OFF!” I wanted the cancer out of my body! I wanted this nightmare to go away! I didn’t want to do chemo and lose my hair! I loved my beautiful hair . I was so, so sad.  She told me that the cancer was stage 2  and aggressive, and they had to kill it with chemotherapy before they could do surgery. They could’ve done a lumpectomy and radiation, but with the cancer I had it would be risky. Chemotherapy first and then surgery was our best line of defense. I cried… the tears fell and I yelled out loud, “Well, if you’re going to take my hair and you’re going to take my tits, then you better take the f*cking cancer!” I was angry. I was sad. I was scared . Rocco looked at me in disbelief and shock. I apologized for my outburst, and Dr. Gostanian looked at me and Rocco and told me I had nothing to apologize for (or something of that nature). It was all too much. I excused myself to use the ladies’ room. I cried in the bathroom. I cried so hard, but stifled it because I didn’t want anyone to hear me. I calmed myself down, splashed some cold water on my face and went back to Dr. G’s office. I asked Dr. G for a list of things I had to get done to get started on chemotherapy. I wanted this DONE!  The following week I went for an EKG and an MRI biopsy. I joked that I wanted to try all the different types of biopsies (mammo, sono, and now MRI). Rocco and I walked out to the car and I remember throwing my pocketbook onto the floor of the passenger’s seat angrily. When we got into the car I sat and cried. Rocco let me cry it out  and then told me what happened while I was in the bathroom. “When you went to the bathroom, Dr. Gostanian got up and closed the door. I was scared of what she was going to say, but she told me that that was the time where if things were bad, she would’ve been prepping me to be there for you, but that wasn’t the case for you. She told me you’re going to beat this. You’re going to beat this, babe! ”  Read More: Empowering Yourself: Questions to Ask Your Doctor After a Breast Cancer Diagnosis Understanding the Different Stages of Breast Cancer: What You Need to Know Permission to Feel: 10 Tips for Navigating Cancer and Treatments with Honesty and Humor The Impact of Breast Cancer on Self-Image Breast Cancer and Mental Health: Recognizing and Addressing Depression and Anxiety On the Podcast: Breast Cancer Conversations Enhancing Patient-Provider Communication in Breast Cancer Care Share your story, poetry, or art: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By Laura Carfang Waiting for medical test results can feel like living in suspended animation. Time stretches. Thoughts spiral. You check your phone more than you realize. You refresh the patient portal even though you know nothing has changed. Your body stays tense, as if something is about to happen. For many people impacted by cancer, the waiting can be just as distressing as the diagnosis itself. And sometimes, something unexpected happens. You prepare yourself for the worst. Let’s talk about why. Preparing for the Worst as a Coping Strategy There is a psychological concept called defensive pessimism . It describes what happens when someone anticipates a high-stakes outcome — like cancer test results — and mentally assumes the worst on purpose . This is not because people want bad news. But because certainty, even painful certainty, can feel safer than hope. By imagining the worst-case scenario, the mind is trying to: Reduce the shock if bad news arrives Regain a sense of control Emotionally “pre-grieve” what might come For those diagnosed with cancer waiting on test results, and frantically refreshing the screen to your medical portal, this strategy is incredibly common. The challenge? When the results are good, your mind has already rehearsed catastrophe — and relief doesn’t land. When Your Body Thinks Waiting = Danger If you’ve been diagnosed with cancer, your brain has already learned something powerful: Waiting for results once changed everything. That memory doesn’t live only in our thoughts — it lives in our nervous system. Psychologists call this anticipatory anxiety  or medical PTSD . It means your stress response activates before  danger is confirmed. When this happens: Your body stays in fight-or-flight mode You scan for threats, even after reassurance Good news feels unreal, fragile, or temporary You might think: “They must have missed something.” “This can’t be right.” “I’ll believe it when more time passes.” This isn’t disbelief; it’s your brain prioritizing safety over celebration. The Whiplash of Good News There’s also something called cognitive dissonance  at play. If you’ve spent days or weeks organizing your life around the assumption that something is seriously wrong, your mind has already adapted. Then suddenly, you’re told: “Everything looks okay.” Your brain needs time to undo what it prepared for. Disbelief is often not denial — it’s lag time between threat and safety. Hypervigilance Is Not Pessimism — It’s Protection Many people feel guilty for not feeling relieved right away. They wonder: “Why can’t I just be happy?” “What’s wrong with me?” “Other people would be grateful — why am I still scared?” Here’s the truth: Hypervigilance is a form of self-protection. Believing good news can feel like lowering your guard — and after a cancer diagnosis, that can feel dangerous. Your mind may be saying: “If I don’t fully trust this, I won’t be crushed if it changes.” How Relief Actually Arrives (Hint: It’s Not All at Once) For many cancer survivors, relief doesn’t come as a wave of joy. It comes quietly: Sleeping a little better Taking a deeper breath without realizing it Thinking about the future for a few seconds longer Relief often arrives in increments, not declarations. You don’t have to force yourself to believe good news fully. You can let it be true for today. Here is a mantra to stay grounded in the present moment: “The results are good right now, and that’s enough.” If you’re struggling to trust good medical news: You are not broken You are not pessimistic You are not doing survivorship  “wrong” Your body remembers how real the danger once was. And it is slowly — at its own pace — learning that this moment is different. You don’t have to rush relief. You don’t have to perform gratitude. You don’t have to explain yourself. If this resonates with you, please know: you are not alone in this experience. At SurvivingBreastCancer.org , we believe survivorship includes the emotional aftermath of waiting, fear, and uncertainty. Healing isn’t just about test results; it’s about giving yourself permission to feel  exactly where you are. Read More: Permission to Feel: 10 Tips for Navigating Cancer and Treatments with Honesty and Humor No Pink Here: What October Really Feels Like for Breast Cancer Survivors The Transformative Power of Art Therapy in Cancer Survivorship On the Podcast: Breast Cancer Conversations Understanding and Coping with Medical PTSD in Cancer Care with Emily Parks Share your story, poetry, or art: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By Katherine Ortiz The timing is the exact same — December again, full circle in time, cancer returning in winter’s hush, just like December 27, 2010 — history repeating its rhyme. Surgery, then chemo, (which I may still say no), learning to navigate a journey I never asked to know. Just when life was opening wide, the red carpet rolled beneath my feet — but I did not fall into despair, I landed gracefully, steady, complete. I landed on angel wings, not broken ground, because God never leaves His children in shock — He cushions the fall, restores the sound, and turns the blow into bedrock. My voice was once silenced, now it is strong, no better timing than now to arise — I’ve been faithful to heal what lived deep inside, so I meet this battle with open eyes. Cancer, I don’t live by what if, I live by not me. I learned to speak up, to stand up, to fiercely advocate for me. I am not bowed down. I am not torn down. I am not destroyed by this storm. I am clay in the hands of a master, pressed, not crushed, being reborn. And just as December once marked the battle, this December will mark the close — what began in winter years ago will end with a warrior’s rose. I will not circle this mountain forever. I was not brought back here to stay. I returned to claim final victory and send this chapter on its way. I am not broken — I am being rebuilt, into something more radiant than before. I am beautiful. I am strong. I am confident to my core. I will beat you, cancer. I will rise. I will survive — and soar. Destiny being completed. Not repeated. Full circle healing. Share your poetry: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By William Laferriere (Dedicated to Gloria and Veronica) The kite’s string frays in my hand the waxy slick hospital vinyl grabs at my slippered feet My IV pole a tall crooked mast, Metrical beeping in counterpoint to the weather report no one turns off. They say hurricane, category something, as if fear had concise little numbers like stages, like tumor size, like OncoScores, like odds printed on a chart that I refuse to flip over. Outside the window the sky is a bruising Off gray, then turns suddenly furious—angry clouds muscle in, heavy with words unsaid and I remember the three fold brochure words: “journey,” “fight,” “brave.” But it doesn’t feel like a fight, it feels like standing on the edge of a big city parking garage with a kite made of my own skin. I tape my hair to the kite tail it’s coming out anyway, tiny surrender flags on a thin plastic spiral Nurse says don’t worry, Doctor claims good margins, Friends say you’ve got this, and the wind answers with a dull roar Emptying all those syllables in the stairwell. Let it fly I tell myself. Fly what? This diagnosis, this stitched‑up chest, this new geography of scars and statistics, this half‑recalled body, with new contours, It used to be simply mine and is now a crime scene with clean white tape and port I step into the parking lot, gown flapping open like a warning sign, That port in my chest a red‑eyed button. The storm wall comes I can taste metal in the air, that before‑the‑impact flavor I also taste at 3 a.m. when the words “what if” won’t stop pacing. This kite is ridiculous— pink and loud and hopeful, and sad its paper thin as skin over my sternum. I shouldn’t run, they said, I shouldn’t lift but nobody said anything about flying kites in impossible weather. So I run. Every chemo session, I run in place, in my head, down a beach That I visit once the drip starts. The hurricane (aka the infusion), then the scans, the scans and the scans, the follow‑ups pile up like dark clouds And the yearly calendar pages rip The line cuts into my palm— this is how you know you’re still here: pain on the edges. The wind tries to yank my kite away, hurling it into someone else’s tragedy, tangling it in somebody else’s power line. I imagine the storm has a certain deleterious face: And looks like every doctor who has ever shrugged, every statistic that didn’t ask my name, every well‑meaning stranger who says at least they caught it early as if that word—early— were a soft pillow instead of a lightning bolt Gusts hit Kite dives, jerks, spirals— I think this is it, this is recurrence, this is the other shoe, this is the scan that calls back at midnight. But then, absurdly, it climbs again Someplace between panic and surrender the string beats a crazy finger rhythm in my hands, a give and take I didn’t know I let out a little line when the wind screams. Pull it in, gently, as it forgets its rage. Breathe in with the storm instead of against it. Breathe out… I remember the word “remission” and how it sounds like a pause button Not a compromise, Now the doctors won’t say cured as if the tongue tied triggers fate. The kite hangs up there, a stubborn punctuation mark scribbled in black weather: I dare not pause, I say, I am the whole sentence. Rain starts, fat and cold, like the first shock of seeing yourself naked after surgery. You grieve the loss, yes, but you also stare at that which remains: a body still stubbornly orbiting the sun, patched and stitched and outrageously alive. Lightning sketches the dark open sky for a moment the kite is all that there is, bright against the bruising ridiculous & unwavering. This is not victory, I think not No not yet, maybe never in the way movies promise, but it is something: I drop the string. My arm is tired. My chest aches where tissue used to be. The wind keeps changing soft, then savage, like scan results, like phone calls, like the way people either lean in too close or back away too far. Still, I hold the line. Not because I believe the storm owes me not because I’m sure I’ll walk out of this with anniversaries to count, but because in the middle of the howl there is the small, precise fact As the kite flies on, like a bird leaves the wire And now In the eye of it— A brief, eerie calm between one terror and the next— I feel the wet string, I see my breath in the crooked dark air, I hear my heart as it knocks my ribs like it’s asking permission to stay. Okay, I tell it. Okay. I’ll stand here…alone and fly this fragile, foolish thing as long as the storm allows, as long as I have fingers, as long as there is any sky at all And throw color against it And if the hurricane wins— if it snaps the line, steals my kite, scatters every lonely pink scrap across a city that may never know my name— remember this: For a while, in the worst of it, I still chose to run into the wind with my whole broken body, refusing to let go of a string that was never designed to be held in a hurricane. Share your poetry: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By Laura Carfang When words fall short, flowers often speak for us. A bouquet can say what we may not know how to put into words. For those navigating cancer—whether as a patient or caregiver—flowers can bring a moment of peace amid uncertainty, a reminder that life still holds color and renewal. Flowers and Emotional Health Three studies by Rutgers researchers in 2005  explored the impact of flowers on mood and social behavior. The researchers found that flowers “have immediate and long-term effects on emotional reactions, mood, social behaviors and even memory.” For someone facing a cancer diagnosis or caring for a loved one through treatment, these small emotional boosts can make a meaningful difference. The fragrance, color, and beauty of fresh flowers can soothe anxiety, ease loneliness, and even help rekindle optimism during tough moments. During my own cancer treatment, I experienced this in a way I didn’t fully understand until much later. During the six months I was in chemotherapy treatment, my husband William brought me flowers every single week: lilies. He’d place them in the living room, right next to the couch where I spent most of my days drifting in and out of sleep. They were always there. Quietly. Consistently. It wasn’t until near the end of my 16 rounds of chemo that I suddenly saw  them. I remember looking over and thinking, Those are so beautiful. When did we get flowers? William said, “I’ve been bringing them home every week.” That moment stopped me. Chemo fog is real. It narrows your world to the immediate—the fatigue , the nausea, the appointments, the next hour. You don’t always have the capacity to see what’s around you, even when it’s lovely. Even when it’s love. But then, slowly, the fog lifts. And you start to notice again. Flowers as a Form of Connection Cancer can at times feel isolating. Treatments, hospital visits, and the physical and emotional fatigue can make social interactions  harder to sustain. Flowers can bridge that gap. They sit there quietly saying, “Someone thought of you today.” And on hard days, that matters more than we realize. For caregivers , giving flowers can be a small, heartfelt way to express empathy and support—which William had been doing every week for six months. For patients, receiving them can feel like a breath of fresh air—a symbol of care, renewal, and hope. Flowers can prompt conversation, evoke memories, or simply bring a smile during a difficult day. Mindful Giving If you’re thinking of offering flowers to someone who has been diagnosed with cancer, consider practical details too. What kinds of flowers are best for their situation? When are flowers not the best idea for someone going through cancer? And what are some alternative ideas?  Every situation is different, and in many cases flowers can be a great option. In general, here are some things to keep in mind: If someone is undergoing chemotherapy treatment, they may experience changes to their sense of smell and become highly sensitive to fragrance, thus making flowers unpleasant. Check with them before sending flowers. Low-pollen options such as orchids, roses, or succulents may be safer choices for allergy concerns. Consider low- versus high-maintenance flower arrangements, especially if the person is experiencing fatigue.  For those undergoing inpatient treatment at a hospital, flowers may not be allowed in their hospital room. Verify the hospital’s policy before sending flowers. For those living with metastatic disease, receiving flowers can be emotionally difficult because of their finite nature and possible associations with funerals. It may be best to forgo flowers altogether if you think they could be triggering for the person. In circumstances where fresh flowers may not be the best option, dried bouquets or artificial arrangements can carry the same emotional impact. The gesture doesn’t have to be elaborate. A single stem in a mason jar or a handmade paper flower from a child can convey immeasurable warmth. What matters most is the intention—to brighten someone’s day, to remind them they’re loved , and to connect through beauty. Receiving Flowers with Gratitude If you’re on the receiving end, allowing yourself to accept such gifts is equally powerful. Flowers can be a gentle reminder to embrace moments of joy. Whether they grace a bedside table or a kitchen window, flowers invite us to pause and breathe. They remind us of nature’s quiet promise: growth and beauty persist, even through seasons of hardship. Read More: Cancer Etiquette: How to Talk With Loved Ones About Their Breast Cancer Navigating Relationships After a Breast Cancer Diagnosis Supporting Loved Ones with Breast Cancer: How to Offer Meaningful Help Managing Fatigue During Breast Cancer Treatment: Tips for Conserving Energy On the Podcast: Breast Cancer Conversations You’re Not Lazy: The Real Science Behind Cancer Fatigue Share your story, poetry, or art: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

Experience Artistic Expression with SBC! Check out the recording of our Mandalas class: Art therapy—encompassing writing, drawing, painting, and poetry—has emerged as a powerful and accessible tool for empowering those diagnosed with cancer to reclaim their psychological well-being and quality of life. For those who are currently facing or have gone through breast cancer, creative expression provides more than a distraction; it offers healing, validation, and community. Art by Linda Recent Research on Art Therapy A recent peer-reviewed systematic review published in the Journal of Cancer Survivorship  synthesized findings from 31 randomized controlled trials involving breast cancer survivors and various art interventions, including visual arts (drawing, painting), music, dance, and poetry.  The results were emphatic: Visual art and music-based interventions consistently led to significant improvements in anxiety, depression, and overall quality of life for those who had completed primary treatment for breast cancer. Dance-based interventions yielded mixed outcomes—showing most promise with body image enhancement—while data on poetry, though promising, remained limited and highlighted the need for further exploration. Why Art Therapy Matters: Addressing the Aftermath of Cancer Art by Mary Even after completing treatment, cancer survivors face other challenges, including anxiety, depression, altered self-image, and existential uncertainty. Conventional medical care often overlooks multi-layered needs. Art therapy offers survivors avenues to process complex emotions, express fears, and cultivate resilience. Enhancing Quality of Life The act of making art—whether painting emotions on a canvas, crafting verses, or simply coloring—can reduce psychological distress and foster a sense of control and hope. Art therapies serve not only as an emotional outlet, but as a means to restore agency and connection: Creative writing and poetry enable survivors to reframe their experiences, articulate new narratives, and find community through shared storytelling. Drawing and painting provide a nonjudgmental space to process thoughts and externalize feelings that are difficult to verbalize. Group art sessions build bonds among participants, reducing the sense of isolation common in survivorship. Art practice often triggers beneficial physiological responses, such as emotional regulation and reduced stress. Creative Healing in Practice at SurvivingBreastCancer.org SurvivingBreastCancer.org   offers a plethora of creative programs as core, evidence-based components of survivorship support. Our programs include: Artistic Expression Expressive Writing  (all stages) Expressive Writing for Metastatic Breast Cancer Meditation Reflection Our offerings are completely free and open to anyone diagnosed with breast cancer, wherever they are in their cancer experience. Want more? Check out lots of videos on our Expressive Arts YouTube playlist ! Art by Stacey The Call to Creativity Art therapy unlocks an individual’s innate healing potential, allowing them not only to cope, but to truly thrive. Research shows that supporting cancer recovery also means supporting creativity—in all its beautiful and restorative forms. “When you create with intention, your subconscious mind begins to speak,” explains Artistic Expression facilitator Elisa Herrera. “As you choose colors, shape forms, or allow words to emerge, you are receiving messages from your inner self. This process becomes a quiet yet powerful conversation, one that reveals what is happening beneath the surface, the emotions that are asking to be acknowledged, and the importance of giving them space to be seen, felt, and honored.” Artistic Expression participants share their experiences: This is one of my favorite programs SBC offers. Learning to express myself is great! I didn't know what to expect from the class. It was good to experience other participants' art and their emotions and stories along with the support. Always a pleasure to attend. My favorite part is when everyone shares. Like always, I love this safe, sacred space! Learn more and register for programs at survivingbreastcancer.org/events . On the Podcast: Breast Cancer Conversations Breast Cancer Stopped My Life—Music and Meditation Helped Me Breathe Again Share your story, poetry, or art: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By Carol Monteiro It was 2021, and the world was holding its breath. The pandemic had reshaped everything – our routines, our fears, even access to healthcare. Annual checkups became afterthoughts, including mine. Everyone I spoke to felt blah! Spending time on couches, overeating, drinking and weight gain. Life felt off. I blamed it on a year-long sabbatical, the comfort foods, the extra wine, the lack of movement. I chalked up my low energy to pandemic blues. And then…   The Discovery I felt a hard mass  under my right collarbone. I ran my fingers over it absentmindedly, assuming I’d bumped into something. Not alarmed a bit. Weeks passed. Then months. I gave it no further thought. It was not until one day I felt the need to call my doctor for a virtual consult as I was experiencing pain in my right wrist. I found I was losing strength and grip. After evaluating the wrist virtually and while writing up the requisition for an x-ray, “Anything else bothering you?” he asked casually. I hesitated as nothing came to mind. Then I felt the need to say something and casually mentioned this hard mass I had discovered under my right collarbone. His tone shifted immediately. Calm to clipped. No questions asked he said, “I want you to go for an express ultrasound – today. You’ll hear from me in two hours.” Two hours? That sounded urgent. Still, I pushed aside the worry, telling myself not to overreact. This had never happened before.   The Diagnosis At the lab, I got in quickly. The ultrasound technician spent an unusually long time over one spot, clicking image after image. Her questions, though not alarming, were gentle and casual. When did you notice it? Does it hurt? How are you feeling? Concern flickered in my mind. But again, I brushed it away. “Your doctor will receive the results within two hours,” she said after over 45 minutes of examination. I found that odd, but yet again, did not give it much brain space. Fifteen minutes after I left the lab, my phone rang. My doctor, his voice, firm now. “We need to do more tests,” he said. “I’ve booked you for a mammogram first thing tomorrow. There may be further steps.” “Further steps?” I asked curiously. “I can’t say more until we investigate,” he replied. “The doctors at the hospital will walk you through. Give yourself 2-3 hours.”  I was puzzled, and the lack of a prognosis was beginning to make me anxious.   The Words That Changed My Life Following the pandemic protocols, patients were not allowed to arrive with companions. As such, I sat alone at the hospital, COVID restrictions keeping my husband outside. After registration, I was handed a stack of forms to fill out. The waiting room smelled like antiseptic – too clean, too sterile. The chair beneath me was stiff, unwelcoming. I found a corner and started filling out the forms. As the questions delved deeper into my and my family’s medical history, particularly with regard to cancer, I began to feel my stomach tighten. I had to make a few calls to my mum to ask details on those that had cancer in our family. As she was getting worried, I comforted her that I was just filling some medical forms and it was nothing to worry about. Meanwhile, I was finding it hard to keep the myriad of thoughts out of my head. I handed the clipboard to the receptionist and took a corner spot in the waiting room. My fingers traced the edges of my phone, its screen flashing with unread messages. “Breathe!” I told myself. “It will all be okay – just breathe.”  First it was the blood test – uneventful, done by a cheerful student. Then came the mammogram. Then the ultrasound. Picture after picture. Reading after reading, the technician swiped honing in on that hard mass. Her face betrayed nothing, but her silence screamed. Forty-five minutes passed before she paused and told me she would need to bring in a doctor. She quietly left the room. Meanwhile, I could hear the notifications of my husband’s messages. My phone was in my purse on the door and there was no way for me to comfort him. And then a doctor entered, direct and unsmiling. His presence tightened the air. “We need to do a punch biopsy. It will be quick. I will freeze the area, which will sting, and then it will all be over.” The needle pierced deep, a dull, insistent ache blooming under my skin. My breath hitched, but I didn’t flinch. Pain was irrelevant now.  Later, I was escorted to a waiting room, where I quickly gave my husband a brief on what had transpired. Minutes later, the oncologist arrived. I had my husband on speakerphone. The doctor asked how I was doing and then said with conviction… “You have breast cancer.”    Four words. That was all it took. A crack split through my world, invisible yet absolute.    My husband sobbed through the phone. I sat frozen. My mind grasped at disbelief, but my body already knew. I asked, “Are you sure?” Duh! Of course he was. The doctor confirmed it with a solemn nod. He went on to say, “You’ll need a mastectomy  within the month.”  Then, just like that, he was gone. A nurse stepped in, placing her hand over mine – warm, grounding and caring. She handed me a bag of something. I hung up on my husband, who was uncontrollably sobbing in the car waiting for me to get done.   I looked down. The bag was full of pamphlets. A thousand unspoken fears.    The biopsy was sent for pathology. However, the doctor gave me an unofficial diagnosis based on what information he had. He was convinced and called me back in a week for the official diagnosis after the biopsy pathology. The Turning Point Forty-eight hours. That’s all it took.  One moment, I was worried about wrist pain. The next, I was staring cancer in the face.    I had two choices – break under the weight or rise. I chose to RISE!   The first night, fear settled in like an uninvited guest. I lay awake, my mind clawing through every moment that led to this. “Where did I go wrong? How did I miss it? What comes next?” The silence was unbearable, thick with unanswered questions . Then I heard it – a quiet voice inside me, steady, unwavering: “There’s purpose in this.”   I didn’t know what that meant yet. But I knew one thing: I refused to disappear under the weight of this disease.    My husband was unraveling. My children, desperate to help. I saw their pain, their helplessness, their fear reflected back at me. I couldn’t fix everything. But I could be their anchor. So I focused on what I could control: ME .    I kept the news close, guarding it like something fragile. My mother-in-law was unwell, and I was not ready to share my news with the world.    Some nights, the fear returned – sharp, insistent. But with every sunrise, resolve took its place. I learned. I questioned. I shifted. My diet changed. My mind sharpened. My body moved more. I meditated. I studied. I prepared. I was diagnosed with invasive ductal carcinoma in my right breast. It started as stage 2; however, after I changed hospitals and had a second opinion  with repeat tests I was staged as 3. I was HER2+. Cancer was in my life. But I would decide the terms   on which it stayed!    I’d faced mountains before – starting over across continents, rebuilding a career, raising children without nearby family, learning to drive, swim, ski as an adult.    I knew I was resilient! This? This would be another mountain. And I would climb it.    A New Purpose My treatment plan included chemo (8 sessions of AC, paclitaxel, and trastuzumab), a full mastectomy, radiation, and 15 sessions of Kadcyla. I was fortunate to qualify for a DIEP flap reconstructive surgery and am beyond delighted with the results. I guess that is the silver lining of this experience. My Treatment Experience I had a great team of doctors who managed my expectations well. That, coupled with my “can do” approach to life, I feel I cruised through it. But I would like to be realistic: The treatments were harsh, and dealing with side effects challenging. I struggled to share my pain with my family as even in my state I felt I needed to take care of them. My children were my huge support. However my spouse really struggled coping with the uncertainty and discomfort. He buried himself in work and did his best to emotionally be there for me. My temperament changed and I felt that those around me could not understand my pain because of my cheerful personality.  Due to COVID protocols, I had to go to my appointments alone and the anxiety of going through treatments, chemo, radiation was only mine.  I found when I shared my dark moments with those close to me, I would end up having to look after them and manage their emotions. I did not have the bandwidth for it and so learnt to manage things on my own or leaned on my girlfriends and another friend who was going through the same. Some relationships faded. Others became lifelines. Five steadfast friends – and their partners – rallied around me . They became my shield, my safety net, my steady ground. My children’s friends sent care packages, their handwritten notes carrying a warmth that reached places medicine couldn’t touch.    Even strangers stepped forward – my pharmacist, my hairdresser, my neighbors. Each one showing up as if the world itself had decided I wasn’t fighting alone. But I wasn’t just surviving. I was transforming.    I now mentor others through various organizations, helping them find strength in food, movement, and mindset. In the quiet moments, I remind them: “You are not alone.”   Cancer forces you to meet yourself. All your fears. All your strengths. Every limit, every possibility. All the love I received had to go somewhere. I couldn’t just absorb it; I needed to channel it. So I built “ ThrivedIT ”, a space for those touched by cancer. A sanctuary of raw stories, hard-earned wisdom, and defiant hope.  And if you’re walking that path – patient, caregiver, loved one – know this:  “You are stronger than you think.” “You do not have to do this alone.”  Connect with the author, Carol Moneiro: ithrivedIT@gmail.com www.thrivedIT.com Read More: Empowering Yourself: Questions to Ask Your Doctor After a Breast Cancer Diagnosis Why a Second Opinion Matters for Breast Cancer Permission to Feel: 10 Tips for Navigating Cancer and Treatments with Honesty and Humor Preparing for my Double Mastectomy and Assembling my Care Team Supporting Loved Ones with Breast Cancer: How to Offer Meaningful Help On the Podcast: Breast Cancer Conversations Breast Cancer Stopped My Life—Music and Meditation Helped Me Breathe Again Share your story, poetry, or art: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

Contact: Laura Carfang laura@survivingbreastcancer.org SurvivingBreastCancer.org FOR IMMEDIATE RELEASE BOSTON, MA  — SurvivingBreastCancer.org  was named among the recipients of new grants from the Gilead Foundation . Totaling over $3 million to 53 organizations, this financial commitment aims to support people affected by metastatic breast cancer (MBC). The Gilead Foundation’s initiative will increase support for MBC education, care accessibility, and support services. Healthcare systems are often unable to accommodate the MBC community’s need for holistic, patient-centered care. This grant from the Gilead Foundation validates the importance of community-based support systems in cancer care. Patients and caregivers alike in the SurvivingBreastCancer.org  community have expressed that education, navigation, and emotional support are vital components of living with MBC.  As a grant recipient, SurvivingBreastCancer.org  views this moment as an acknowledgement of the need for trust and lived experience in cancer care’s evolution. Community connection plays an essential role in navigating the most challenging aspects of post-diagnosis life. Financial support in this area is an empowering reminder that the sentiments of the MBC community are heard loud and clear. What This Investment Means for the Metastatic Breast Cancer Community While MBC treatments have advanced in recent years, more progress is needed. “The five-year relative survival rate for people with mBC is 29%, highlighting an urgent need for improved education and integrated support services to help patients navigate complex treatment decisions and improve outcomes,” the Gilead Foundation stated . Additionally, people living with MBC are far more than mere statistics, and survival rates fail to capture human experiences. These unique individuals face unimaginable challenges and side effects on a daily basis — all while attempting to traverse an often-discombobulating and fragmented healthcare system. With support from the Gilead Foundation, SurvivingBreastCancer.org  will expand and strengthen its metastatic breast cancer programming through a focused, multi-pronged approach designed to address the real-world challenges people face after diagnosis. Grant funding will be used to: Expand metastatic breast cancer-specific education  by developing accessible, evidence-informed content that helps individuals better understand treatment options, disease progression, and shared decision-making. Strengthen patient navigation and health literacy support , ensuring individuals living with MBC can more confidently interpret medical information, prepare for appointments, and advocate for their care. Increase access to emotional and psychosocial support , including peer connection opportunities and facilitated community spaces that reduce isolation and emotional burden. Advance culturally responsive and inclusive programming , with an emphasis on meeting individuals where they are and addressing disparities related to language, access, and health literacy. SurvivingBreastCancer.org ’s Role as a Trusted Community Partner Since 2017, SurvivingBreastCancer.org  has addressed the overlooked aspects of cancer care through patient-centered education and community-driven programming. The organization has become a trusted resource for the MBC community, with initiatives informed by lived experiences. By prioritizing the needs of those impacted by MBC — including patients, caregivers, and advocates — SurvivingBreastCancer.org ’s programs and educational resources are shaped by real people to address their challenges. These programs and support services continue to bridge the gap between clinical treatment and everyday life while remaining accessible, relevant, and compassionate.  “Investments like this grant from the Gilead Foundation move the field forward by validating community-based organizations as essential partners in cancer care,” said Laura Carfang, Ed.D., founder and executive director of SurvivingBreastCancer.org . “When we center the lived experiences of those impacted by metastatic breast cancer and invest in sustainable support systems, we don’t just improve care — we restore dignity, agency, and hope.” The Gilead Foundation’s recognition of SurvivingBreastCancer.org  also highlights the need to address disparities in access to information and support. Many individuals with MBC also face health literacy gaps, cultural and linguistic barriers, and limited access to trusted resources. SurvivingBreastCancer.org  remains committed to inclusive, accessible education that meets people where they are and reflects the diversity of experiences within the breast cancer community. Building Sustainable, Patient-Centered Metastatic Breast Cancer Care SurvivingBreastCancer.org  recognizes the Gilead Foundation’s commitment to advancing education, care, and support for people affected by metastatic breast cancer. As a grantee, SurvivingBreastCancer.org  will transform this investment into tangible educational resources and community-driven programming. This investment invites donors, partners, and media to recognize the vital role community-based organizations like SurvivingBreastCancer.org  play in strengthening cancer care. By investing in education and sustainable support models, this grant helps ensure that people living with metastatic breast cancer are not only surviving but are informed, supported, and empowered. Contact:  Laura Carfang  Founder and Executive Director laura@survivingbreastcancer.org www.survivingbreastcancer.org

By Annette Lindell Annette speaking at City of Hope Cancer Center’s Pink Coats ceremony in September 2025 Imagine being newly engaged to the love of your life, going on holidays together, planning a future, working a great job and living in an incredible city and then all of a sudden everything changes. Two and a half years ago, my life changed with the discovery of a single lump. It was small, unexpected, and easy to dismiss, but something in me knew it needed attention. On April 17, 2023, I received the diagnosis  no one ever wants to hear: Stage 2B  triple-negative breast cancer, an aggressive form of the disease  that often leaves little room for delay. In that moment, the world felt as if it had tilted on its axis. Everything familiar suddenly looked different, colored now by uncertainty and fear. But what I didn’t know then was just how deeply resilience, love, and purpose would shape the months ahead. The treatment plan was daunting: eight rounds of chemotherapy, 16 rounds of immunotherapy, two lumpectomies, and 20 sessions of radiation. Each phase brought its own obstacles, both physically and emotionally. Chemo days tested my endurance, immunotherapy  pushed me to redefine strength, and surgery and radiation forced me to confront the vulnerability of my own body. Yet through all of this, something inside me refused to break. I held fiercely to hope and made a decision early on: cancer would change my life, but it would not steal my joy. What surprised many, including myself at times, was how much life I managed to fit in between the appointments, infusions, and recoveries. Cancer did not stop me from showing up for the moments I had always dreamed of. I celebrated two bridal showers, laughed my way through two bachelorette parties — one of them a wild, unforgettable weekend in Nashville — and walked down the aisle at a beautiful, joy-filled wedding to the love of my life, who never once left my side. We took a mini-moon, followed later by a full honeymoon, making memories that reminded me of who I was beyond the patient, beyond the diagnosis. Even more astonishing to people around me was that throughout this whirlwind of treatment and celebration, I rarely took more than three or four days off work. For me, staying engaged wasn’t about ignoring my illness; it was about holding on to a sense of normalcy and purpose. Work gave me structure, community, and a reminder that my identity stretched far beyond hospital rooms and scan results. Every day I chose to show up was an act of defiance — proof that I could still live fully even in the middle of something life-altering. I wasn’t doing it alone. My journey was carried on the shoulders of family and friends  and even my doctors at City of Hope Chicago, who became my rocks. They offered rides, meals, laughter, late-night pep talks, and the kind of unwavering presence that makes even the darkest moments feel survivable. My husband’s strength and tenderness grounded me; his belief in my resilience helped me believe in it, too. My doctors guided me  with utmost patience every step of the way. Cancer might have challenged my body, but my community fortified my spirit. And then came a chapter of my story I once wondered if I’d ever reach: remission. Today, I can say those words with gratitude that feels almost indescribable. But remission wasn’t the final miracle. Not long after reclaiming my health, I stepped into a role I had dreamed of for years: motherhood . I am now the proud mom of a beautiful baby girl who will soon be eight months old. Holding her is a daily reminder of everything I fought for: the future, the love that sustained me, and the belief that life could bloom again after so much uncertainty. When I look back, what stands out most is not the hardship, but the sheer force of will that carried me through. There’s no way to soften the truth that treatment was hard. There were days when my energy was gone, when fear crept in, when progress felt too slow… but I learned that the mind is an extraordinary thing. A strong mindset doesn’t eliminate hardship, but it transforms how you face it. I leaned into determination, into gratitude, and into the conviction that I would get through every phase. And I did. Sharing my story isn’t about celebrating myself; it’s about offering something to anyone who needs a reminder to pay attention to their bodies, trust their instincts, and advocate for their health. If something feels off, check it. Don’t wait, don’t minimize it, don’t assume it can wait for another season of life. Make the appointment. Do the scans. Get the mammogram. Early detection does more than save time — it can save your life. My journey has taught me that adversity doesn’t erase joy; it reshapes it. It sharpens your awareness of what matters most and amplifies gratitude for moments you once took for granted. I found strength I didn’t know I had, witnessed the power of community, and learned that even in the hardest chapters, life can still be filled with love, milestones, celebrations, and the promise of new beginnings. Today, as I watch my daughter grow and feel the fullness of a life I fought so fiercely to protect, I am reminded of the importance of listening to your body and honoring your wellbeing. My story is one of challenge, but also one of triumph, resilience, and overwhelming love. And if it encourages even one person to take their health seriously, to seek answers sooner, or to believe in their own strength through struggle, then sharing it is worth every word. Read More: From Diagnosis to Determination: My Triple-Negative Breast Cancer Journey After Your Breast Cancer Diagnosis: Planning Your Next Steps Questions to Ask Your Doctor After a Breast Cancer Diagnosis Understanding the Different Stages of Breast Cancer: What You Need to Know Supporting Loved Ones with Breast Cancer: How to Offer Meaningful Help The Critical Role of Oncofertility and Genetic Counseling The Role of Hormones in Breast Cancer Advances in Immunotherapy: A New Frontier in Breast Cancer Treatment On the Podcast: Breast Cancer Conversations Preparing for Breast Cancer Surgery: What You Need to Know with Dr. Tammaro Share your story, poetry, or art: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By Mich Moret In 2026, I choose to be lightbound. I anchor myself to goodness, truth, and clarity. I release what dims my spirit, confuses my path, or drains my energy. I move forward with discernment, not fear— choosing what is real, what is kind, and what is aligned. I allow light to guide my decisions, my words, and my rest. I do not chase brightness; I remain tethered to it. I trust that what is meant for me will meet me in truth and integrity. I am steady. I am protected. I am lightbound. Share your poetry: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By William Laferriere Last year thins to a thread barely holding the weight of what was receipts tossed unceremoniously in a drawer messages (and emails) unanswered the dull echo of old arguments still hum in the corners of the mind Hands move through pockets, closets and folders sifting, discarding, forgiving by inches the past now reduced to paper dust and stale, salt free air windows opened in the middle of winter to let the cold cut through all that lingers There is a moment quiet as a new dawn when the clock has not yet turned and everything that might happen Anxiously leans forward at the threshold No fireworks yet just the soft machinery of the heart rebooting, blood coursing through supple veins saying yes again to a world that has not yet promised anything but keeps arriving anyway Boxes of old plans kicked to the curb shoulders loosen the spine remembers how to stand taller it feels like starting a book without knowing the title only that the pages are blank as the pen fits firmly in your hand In this thinly lit space between what’s done and what’s beginning time feels elastic infinite in all directions every choice a small door swinging open into rooms you have not yet imagined The year ahead waits unwritten, unashamed of its uncertainty and somehow that is the gift No guarantees only the wild, unnerving freedom to become someone new one quiet decision at a time Share your poetry: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By Elizabeth Borowsky Listen to Elizabeth on the SBC podcast, Breast Cancer Conversations : Breast Cancer Stopped My Life—Music and Meditation Helped Me Breathe Again I was 41 when I was diagnosed with breast cancer — grade 3, ER/PR-positive, HER2-negative. My tumor measured 3.1 cm, and genetic testing  revealed a CHEK2 mutation, even though I have no family history of breast cancer. It started with what I assumed would be a routine screening in November 2024 — my first mammogram after turning 40 , though I didn’t actually get around to scheduling it until age 41. A few days later, I got a call to come back for additional images because of dense breast tissue . I wasn’t especially worried; I knew callbacks were common. After the second mammogram and an ultrasound, they recommended a biopsy “just to be safe.” Even then, I didn’t think there was any real chance that this would be my story. I was healthy, active, and had no family history of breast cancer. When the results came back positive for breast cancer, it was completely unexpected — one of those moments that divides life into “before” and “after.” At the time, I was living a full, active life as a pianist, composer, and educator. My schedule revolved around students, concerts, and planning summer music programs. When I got the diagnosis , everything changed. Friends often asked about my staging , especially when they first heard my diagnosis. Interestingly, my stage was never mentioned by my provider or included in my medical reports. I finally asked my oncologist and learned that in my case, staging would be determined after surgery based on several factors. In the very beginning, before receiving some of my test results, I’d quietly hoped for something like stage 0 (also known as ductal carcinoma in situ , or DCIS), as a friend of mine had experienced and shared with me in hopes of encouragement. By the time I asked, I knew that wasn’t realistic, but hearing that I was likely stage IIB or even stage III (depending on lymph node involvement) brought me to inconsolable tears. My oncologist explained that staging criteria have changed in recent years and reminded me not to fixate on the number—it does not tell the whole story. Ultimately, after surgery, my official stage—reflecting the significantly reduced tumor size—would be IIA. A few days after my diagnosis, a large book arrived in the mail: The Breast Cancer Survivorship Handbook.  It was thoughtful and comprehensive — but also completely overwhelming. I remember sitting at home flipping through page after page of potential side effects, risks, and complications. I was completely devastated. It wasn’t just the medical information — it was the realization of how many decisions  would have to be made, how few real choices  there sometimes are, and how much of this journey I had never even imagined until that moment. Treatment Path My treatment began with five months of ACT chemotherapy: doxorubicin (Adriamycin), cyclophosphamide (Cytoxan), and paclitaxel (Taxol). At my first Taxol infusion, I had a mild allergic reaction, and at the second, a stronger one, so my oncologist switched me to nab-paclitaxel (Abraxane), which I tolerated much better. AC chemotherapy was particularly challenging for me (especially on/after treatment days), but it was manageable with good support. I stayed active  when possible,  focused on hydration and nutrition, and celebrated small victories—like going for a walk with a friend, doing some photography, or helping my partner with a house project, which felt oddly empowering with the power tools! I counted down the days to being done, and a couple of weeks later, I celebrated with a “tour de friends,” spending an entire week visiting friends in my home state of Maryland whom I hadn’t seen for months. I continued my work teaching all through chemo (I had a substitute on infusion days). I asked families to be mindful of my compromised immune system and not to come in person if anyone in their household was sick. In July, I underwent a lumpectomy. Pathology showed  that the tumor had shrunk from 3.1 cm to 6 mm, and all three lymph nodes that were biopsied were clear. After healing from surgery, I completed 20 sessions of radiation therapy, finishing on October 13, 2025. Facing Fears and Finding Support From the start, I had a lot of fears about breast cancer treatment: nerve damage (neuropathy), lymphedema , and fatigue  that might affect my ability to perform and teach piano. Thankfully, my care team was proactive about preventing side effects, and most of these risks were managed well. I took vitamin B12 and L-glutamine during treatment (as recommended by the pharmacist on my oncology team), and used cold mitts on my hands and feet. I was constantly thirsty and drank a lot of water. One of the most valuable parts of my experience was the support I received  from friends, family, and colleagues. People near and far reached out with prayers, messages, and dropped off meals. Friends volunteered to drive me to chemo — something I would recommend to others. Having company during those infusion sessions turned a stressful experience into something almost social and grounding. That network of care — which was both local and long-distance — was essential. It reminded me that even when things feel uncertain, I wasn’t going through it alone. Inner Harmony: Healing Through Music and Meditation Jesika Harmon During treatment, I reconnected with my friend and mindfulness teacher, Jesika Harmon. Together, we began exploring how meditation  and music could work hand in hand to support healing. Each week, Jesika led a guided meditation while I improvised at the piano — letting sound respond to words, breath, and emotion. Those sessions became the foundation for our album Inner Harmony , which we released on October 25, 2025. Each track reflects a different stage of emotional healing and perspective during my treatment. Track Overview I Am More Than My Body Explores how we can meet physical change — from illness, aging, or transition — with curiosity rather than resistance. Like the changing seasons, our bodies transform, revealing new strength and beauty. I Can’t Do This Alone, But I Am Not Alone A reminder that support often arrives quietly: in gestures, glances, or words we may have overlooked. By noticing these small acts, we reconnect with the unseen network of care surrounding us. The Only Way Forward Is Through Embraces emotions such as anger, grief, or frustration as essential to healing. By allowing these feelings to move through us, we make room for acceptance, hope, and peace. There Is More to This Than I Can See Shifts the focus from “why me?” to “what can I learn from this?” — helping transform pain into meaning and gratitude. There Is Plenty of Time Invites stillness, self-compassion, and trust. It encourages us to slow down, accept help, and release the urgency to do everything at once. Mantras and Affirmations for Perspective and Transformation Offers phrases to anchor the mind during challenging moments — not to escape pain, but to face it with steadiness and presence. Evening Relaxation for Mind and Body A closing meditation that allows both body and mind to rest, easing the transition from thought to calm. What I’ve Learned If I could offer one message to anyone newly diagnosed, it would be this: you don’t have to do this alone.  Let people help. It brings comfort to you and meaning to them. Also, take information in manageable pieces. That 300-page handbook had its place, but what helped most was focusing on one step at a time: the next appointment, the next meal, the next nap. Healing isn’t just about finishing treatment — it’s about learning how to live well through and after it. For me, that includes managing a few lingering side effects such as stiffness in my feet, dry mouth and eyes, and some sleep issues. But they’re small reminders of everything my body has overcome.  More importantly, I’ve realized that many of the personal challenges that surfaced during this time were not new — they had simply been waiting beneath the surface. Cancer didn’t create them, but it brought them into sharper focus. Through this experience, I’ve learned tools and practices to navigate them with more awareness and resilience — lessons that extend far beyond cancer. Some other recurring themes in my experience include: The constant stream of advice  — from well-meaning friends, strangers who noticed I was going through chemo, and soon enough (thanks to all the Google searches) targeted Facebook and Instagram ads — was overwhelming. Everyone wanted to help or offer a “solution,” but it often sent me down rabbit holes trying to figure out whether there was any real data behind the claims. Instead of clarity, I ended up confused and doubting whether I was making the right decisions about my treatment. At times, it even made me wonder if any of this was somehow my fault — if I hadn’t consumed wine or alcohol, if I had eaten a more plant-based diet, or if I had worked on reducing my stress... would this have happened? I struggled to find other classical musicians who had gone through breast cancer  and could share how treatment affected their playing. My providers warned me about potential side effects that could be truly debilitating for a musician. They understood my concerns, but they couldn’t offer much reassurance — and it was terrifying to realize that even my arms and fingers could be affected. Letters from the hospital and my insurance were another source of anxiety. Every time I saw one of those envelopes, my blood pressure went up. And as a self-employed musician who had been paying for my own insurance for years but hardly ever used it, I kept wondering: had I made the right choices? I kept thinking about my dear friend and mentor , the adult closest to me besides my mom, who had breast cancer in her early 40s, experienced a recurrence, and passed away in 2021. The irony and heartbreak — that she was the person I most wanted to talk to about all of this  — was not lost on me. I learned firsthand how uniquely complex each case is.  When people say “everyone’s cancer is different,” I hadn’t truly understood it until now. I also realized that even people who know a lot don’t necessarily know a lot about my  situation — specialists in one medical field may not know much at all about breast cancer. Moving Forward I’ve returned to performing and teaching, with a deeper appreciation for balance and self-care. My music and teaching now carry an added layer of empathy and mindfulness. Inner Harmony  is available on Spotify, iTunes, and YouTube. It’s my hope that these meditations and piano works offer comfort, grounding, and a sense of connection to anyone navigating their own challenges — medical or otherwise. About the author: Elizabeth Borowsky is a pianist, composer, and educator whose work celebrates music as a source of connection, healing, and storytelling — a reflection of our shared humanity. She has performed in more than 30 countries — from Carnegie Hall and The Kennedy Center to festivals across Europe and Asia — earning acclaim for her expressive playing and ability to connect deeply with audiences. Contact: eborowsky@gmail.com More on Inner Harmony (with links to listen/watch) here: https://www.elizabethborowsky.com/inner-harmony   Read More: How to Improve Cancer Screening for People with Dense Breasts Understanding Your Pathology Report: A Comprehensive Step-By-Step Guide Supporting Loved Ones with Breast Cancer: How to Offer Meaningful Help What Is Lymphedema? Causes, Stages, and How to Live Comfortably Exercise and Breast Cancer Recovery: A Safe and Empowering Guide to Staying Active Managing Fatigue During Breast Cancer Treatment: Tips for Conserving Energy Genetic Testing and Previvorship: Preventive Measures to Reduce Cancer Risk On the Podcast: Breast Cancer Conversations Breast Cancer Stopped My Life—Music and Meditation Helped Me Breathe Again Share your story, poetry, or art: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By Pooja Jain I know a girl who once tried to grow her hair longer with herbal packs, sesame, and coconut oils, and gently coloring with henna paste. After chemotherapy, she learned to come to peace with her bald head. I know a woman who always worked to keep her weight in check – walking, dancing, yoga, all part of her healthy lifestyle. But after breast cancer treatments and strong medications, She now feels the weight is here to stay. When she looks in the mirror, She sees a masterpiece. A beautiful, imperfect, Wabi-Sabi work of art. She decorates her masterpiece with bright lipstick, Plans healthy meals each day, And walks, always seeking nature’s company for well-being. Love and kindness toward oneself. A constant reminder to us all. Hello fellow beings, How do you take care of your masterpiece? Share your poetry: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By Kristen Carter Dear Kristen, As someone living with MBC, it's hard not to go down rabbit holes, especially as we are seeing a lot of our MBC friends passing away. How do you manage survivor's guilt? -Anonymous Dear Anonymous, Survivor's guilt is real and we all experience it in different ways. For some it is internalized with the stark reality that cancer can take what is most precious to us: our lives. It’s a sobering reminder each time we are faced with the next line of treatment. We see ourselves in others and try to make sense of what that means not only for the people we’ve lost and their loved ones, but what will that mean for me? My loved ones? My family? I have lost two friends to breast cancer since being diagnosed four years ago. Both were lovely women doing wonderful things in the world, and gone too soon. My heart was broken both times. I did what I would want them to do if our roles were reversed: I dedicated myself even more to living my own life to the absolute fullest. I think being alive is such a gift, and that those who pass wish for us to make the most of every moment we are here, through everything we experience. This brings me to what I think happens to us and our loved ones when we transition from this life. When I was ten years old, I caught a glimpse of “the other side,” when I almost died touching a neon motel sign: I was a completely different being, asking the other beings in a sort of middle space, “Is it time for me to come back already ?” And their clear answer was, “Oops, nope, too soon!” I could see a light place behind them, but they were hustling me back to my body. The sign shattered and I woke up in the grass – alive, but with a memory I’ll never forget. Regardless of religious or spiritual affiliation, I believe the people who have passed before us are okay, safe, and watching over us. They can be with us in ways they couldn’t have when they were here with us. They are well and they wish us well. I’ve found that paying homage to the friends we lose to breast cancer can help make sense of the often-intense emotion of survivors’ guilt. Here are some ideas you might try if you’d like to honor your late friends in a special way: Light candles in their honor. I do this in memory of my mom, using a pretty candle holder she used to love. Pray/speak to them on a regular basis. If you keep an altar of any kind for meditation or prayer, add something of theirs or something that represents them, like a photo or personal item. Speak to them in nature. Enjoy their favorite food. Refer to them often in your gratitude journal, if you keep one. Wish them well in their new form/place. Do volunteer work for or make a donation to a cause that mattered to them. Do something loving for their families, particularly around days that might be hard, like their birthdays, the holidays, or the anniversary of their passing. Say their name and speak of them often. It is our responsibility to make sure we do what we came here to do, even if we are still figuring out our purpose: Learn, grow, love and experience challenges the great human experience provides us. I do my best to live this way and to send gratitude and love to the people who pass. That’s how I manage survivor’s guilt. I’d love to hear how this resonates with you; please write back. xo Kristen

By Abigail Johnston “ Survivor guilt (or survivor’s guilt ; also called survivor syndrome or survivor’s syndrome ) is a mental condition that occurs when a person believes they have done something wrong by surviving a traumatic event when others did not, often feeling self-guilt. The experience and manifestation of survivor’s guilt will depend on an individual’s psychological profile. Survivors Guilt Symptoms When the Diagnostic and Statistical Manual of Mental Disorders IV (DSM-IV) was published, survivor guilt was removed as a recognized specific diagnosis, and redefined as a significant symptom of post-traumatic stress disorder (PTSD). It may be found among survivors of combat , epidemics , murder , natural disasters , rape , terrorism among the friends and family of those who have died by suicide , and in non-mortal situations.” This is such a real thing amongst breast cancer patients and I confess that I had no real concept of how this works until the first person with Stage IV metastatic breast cancer I was close with died. I didn’t have much of a frame of reference for how I would feel about Kari dying. That was her name, Kari. Kari Roush . I read once that when a person dies, there are three deaths: 1) when their physical body fails; 2) when the physical body is buried; and 3) when their name is forgotten. Kari has passed the first two deaths. As far as it depends on me, her memory will not be forgotten. When I heard Kari died, it wasn’t a surprise. She’d been failing for weeks and she was home and cared for by her family and hospice. She was comfortable (as comfortable as possible) and she was ready to leave the suffering of her human body and go to be with Jesus in heaven. She was ready, but I wasn’t. Kari’s death hit me like a ton of bricks and I’d never met her in real life. We’d never even talked on the phone. We were literally strangers to each other except for the late night messages and discussions we had regularly. It felt weird that I was floored and felt so awful. It felt almost wrong, like I didn’t have a right to be grieving when I had such a small part of her. Turns out, I was also dealing with survivors guilt in a big way. You see, Kari and I had nearly an identical diagnosis, hormone positive, her2- breast cancer that had metastasized to our bones only. We were even on the same medication. Yet, I was stable and she started having progression. Once the cancer left her bones, there wasn’t much time. Others I know have lived for years with their cancer in various organs. Others I know have bone only Mets that stay put for decades. Kari didn’t. Kari’s cancer started growing out of control. Why? Only God knows. How am I different or any other patient? Again, only God knows. What I know is that I felt for the first time in my life, when Kari died, that there was no reason it should have been her and not me. None. And that sucked, big time. It still does. I see friends around me dealing with progression, brain lesions, new organ involvement, lesions that are growing and lighting up. I see friends around me who are stable, some for decades. There are those who are diagnosed and die very quickly. There are those who linger, just hanging on. There are those who are living lives of meaning, working, being productive. There are those who can’t. Nothing can predict reliably who will be an outlier and who will succumb quickly. And that sucks, really sucks. It sucks for the people who get so sick and their families and it also sucks for those of us left behind. It seems to me that there is still some amount of stigma for those of us who struggle with survivors guilt. Somehow it seems to me that there is an expectation that we’d be able to move on, to shrug off the sadness and often paralysis when a person has died. I don’t know why and I don’t have answers, I just know that survivor’s guilt is a real thing and it is truly awful. If you are dealing with the death of someone or even just struggling with sharing good news when people around you are struggling, it’s normal. To have survivors guilt or to struggle with feelings that others who are not metastatic don’t understand, is real, it’s natural and it’s normal. There is help available. Reach out, ask for help, work through your feelings. Stuffing feelings of guilt, ptsd, etc only hurts you. No one else. Ask for help. Have you experienced survivor's guilt? Share your experience with us ! For more writings by Abigail, visit her website at https://nohalfmeasures.blog/

By Jim Foote Chief Executive Officer & Co-Founder, First Ascent Biomedical Hear from Jim Foote on the SBC podcast, Breast Cancer Conversations : 272. This AI Is Changing How We Treat Cancer—Personalized Medicine Explained Cancer picked a fight with the wrong guy. A phone call delivered three words that changed everything: “Jim, it’s cancer.” In that instant, the world I knew had vanished. My 15-year-old son, Trey, was diagnosed with osteosarcoma, an aggressive bone cancer, and overnight, we found ourselves in a foreign world of brilliant doctors and compassionate nurses, all working to save his life. Trey endured nine months of grueling chemotherapy after his osteosarcoma diagnosis. When he finished chemo, he underwent surgery to remove the tumor, and we celebrated that victory together. Unfortunately, just three months later, an aggressive 5 cm lesion returned behind Trey’s knee. That was when the difficult decision was made to amputate his leg. Despite this, Trey bravely began a new treatment regimen, and once again, when the cancer was gone, we allowed ourselves to celebrate.  Heartbreakingly, within six months, Trey’s cancer returned again, this time spreading to his pelvis and lungs. Ultimately, Trey lost his life to cancer, but his courage and resilience remain with us always. With Trey’s recurrences, it became painfully clear how few tools were available to guide Trey’s oncology team when the standard of care fails. Despite billions spent on research, cancer treatment remained a process it had been for forty years: trying, waiting, and hoping. As a technologist who has spent a career using data and AI to solve complex problems, this realization hit hard. Where it mattered most, cancer treatment was still largely trial and error. That moment set me on a new mission: to bring precision to a fight that has relied on guesswork for far too long. Why Trial and Error Doesn’t Work in Cancer For decades, oncology has maintained a one-size-fits-all approach. Patients are categorized by broad diagnoses, such as breast, lung, or colon cancer, then treated with therapies shown to work on average. But cancer isn’t one disease. It’s thousands, each driven by unique biological behaviors that can differ dramatically from one patient to another. Progress has undoubtedly been made—breast cancer deaths have steadily declined thanks to advances in early detection  and therapy. However, the American Cancer Society’s data reveals that breast cancer incidence is rising by about 1% per year .  Two people with identical breast cancer diagnoses  may respond in completely different ways to the same drug: One might see their tumor shrink while another sees no change at all. This is not because one is stronger or more fortunate, but because their tumors are biologically distinct. Even within established subtypes  like triple-negative or HER2-positive breast cancer, tumors behave uniquely. As a result, countless patients endure rounds of ineffective therapies before finding the right one, if they find it at all. For someone already experiencing the physical and emotional toll of breast cancer, uncertainty can be overwhelming. Every failed round of therapy means more side effects, more time lost, and more emotional and financial strain.  A Foundational Shift: From “Try and Hope” to “Test and Treat” Functional precision medicine (FPM) redefines cancer care. Where genomics  provides the sheet music—the theoretical blueprint—FPM tests how a patient’s tumor actually performs in response to therapies. Here, AI is the conductor: listening, analyzing, and adjusting the performance in real time.  Instead of guessing which drug might work based on genetic markers or the standard of care, functional precision medicine (FPM) directly tests a patient’s living tumor cells against hundreds of FDA-approved drugs in the lab. Within days, doctors receive data showing exactly which treatments kill the cancer and which ones do not. Robotics and automation have transformed this process, reducing the time and labor required from hours to minutes while improving quality and reliability. The integration of AI  enables physicians and hospitals—even in rural communities—to deliver advanced, individualized cancer therapy without the traditional barriers of cost or access. For breast cancer patients, especially those facing recurrence  or resistance to earlier treatments, this approach can be transformative. Instead of moving blindly from one treatment to another, patients and doctors can see which therapies are most likely to work before the next treatment even begins. It’s a shift from “try and hope” to “test and treat.” A prospective study conducted among 25 patients from 2019 to 2022  demonstrated that 83% of patients who received FPM-guided treatment had an improved best overall response. Additionally, with FPM, treatments start sooner, and side effects decrease through the elimination of ineffective drugs. This isn’t the future; it is today’s reality. The Power of Data and the Heart of Humanity Technology alone doesn’t heal people. But it gives doctors and patients the information they need  to make better decisions faster. The true power of FPM lies not in replacing clinicians, but in empowering them to act with clarity. When oncologists access real-time data from a patient’s own tumor cells, they’re no longer forced to choose between uncertainty and delay. They can act with confidence. For families, this means more days spent living—fewer hospitalizations, fewer futile treatments, and the return of cherished everyday experiences. I’ve seen patients once told there were “no options left” returning to school, to work, to life. That’s the kind of transformation this approach can bring. Scaling Access Through AI and Robotics Is such personalization scalable? It’s a fair question—yet, in the not-so-distant past, reusable rockets seemed impossible until new visionaries challenged conventional wisdom. Just as SpaceX reimagined aerospace innovation, the convergence of AI and robotics is rapidly making advanced cancer precision care both accessible and affordable to more patients. What took hours of painstaking manual laboratory work can now be automated and analyzed rapidly, delivering precise testing once available only in elite research hospitals to smaller clinics across the country. For breast cancer patients who cannot travel for trials or second opinions , this represents a fundamental change in the landscape of care. Every patient, regardless of geography, deserves the opportunity for the most informed and effective treatment possible. The Importance of Emotional Precision When my family went through cancer, the hardest part wasn’t just the science. It was the silence of not knowing what would work. Every test, every delay, carried a weight that words can’t capture. Millions of families face these same questions: Will this work? How long will it last? What happens next? FPM offers not only superior data but also peace of mind. It helps families move from fear to focus, from uncertainty to understanding. Because when you can see what works, hope stops being abstract. It becomes evidence. Redefining Hope Through Evidence We often talk about cancer in terms of survival, but survival is just the start. True healing happens in the quiet moments between appointments when patients can rest, recover, and rediscover joy. Every day not spent in a hospital bed is a victory. Every drug that can be safely eliminated—one that doesn’t help—is progress. The future of oncology is not about replacing physicians. It’s about giving doctors superpowers, tools that combine biology with computational precision so they can deliver with human compassion. Moving from best-guess medicine to data-driven care gives patients, including those with breast cancer, the fairest chance at recovery, and the highest quality of life. A Future Within Reach Imagine a world where every doctor knows which drugs will work before treatment begins—a world where breast cancer patients never have to hear the words, “We just have to wait and see.” That world is no longer a dream. It’s being built right now through functional precision medicine, robotics, and AI.  Cancer taught me that time is our most precious commodity. Through technological innovation, medicine has the power to restore more birthdays, more celebrations, and more second chances. By advancing from guesswork to precision, we don’t just change medicine. We change lives. About the Author: Jim Foote is the CEO and Co-Founder of First Ascent Biomedical, a company developing AI-driven Functional Precision Medicine platforms to personalize cancer care. A lifelong technologist and entrepreneur, Jim began his career building data and decision systems before focusing on healthcare after losing his son, Trey, to cancer. His mission is to ensure every child facing cancer has access to data-driven, individualized treatment options. LinkedIn: https://www.linkedin.com/in/jim-foote/ Read More: Unleashing the Potential of AI in Breast Cancer Screening, Diagnosis, and Treatment Understanding Your Pathology Report: A Comprehensive Step-By-Step Guide Why a Second Opinion Matters for Breast Cancer How to Improve Cancer Screening for People with Dense Breasts Addressing Breast Cancer Recurrence in High-Risk Patients Different Types of Breast Cancer The Role of Hormones in Breast Cancer Treatment Tips & Questions to Ask Your Medical Oncology Team On the Podcast: Breast Cancer Conversations This AI Is Changing How We Treat Cancer—Personalized Medicine Explained Share your story, poetry, or art: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

For the seventh year, SurvivingBreastCancer.org (SBC) attended the San Antonio Breast Cancer Symposium (SABCS)—and for the second year, we proudly brought patient advocates through our Educational Scholars Program. SABCS is one of the most influential global meetings in breast cancer research. But for those of us living with breast cancer, the question isn’t just what’s new? —it’s what does this mean for patients right now and in the future? Below, our SBC advocates share why they chose specific sessions, followed by what the evidence presented at SABCS 2025 suggests so far. Young-Onset Breast Cancer Laura Carfang, EdD – Founder & CEO, SurvivingBreastCancer.org Why I Attended I attended the session on young-onset breast cancer because I was diagnosed with stage IIB triple-positive (HR+/HER2+) breast cancer at age 34—after my concerns were initially dismissed by primary care providers. I had no family history, no known genetic mutation, and lived a healthy vegan and active lifestyle. As breast cancer rates continue to rise among people under 45, I wanted to hear what the data says about how age impacts diagnosis, treatment decisions, fertility, relationships, and long-term survivorship. What the Science Says (SABCS 2025) Young-onset breast cancer continues to be recognized as biologically and psychosocially distinct from postmenopausal disease. Prior SABCS meetings and published literature consistently show: Higher rates of aggressive subtypes (HER2+ and TNBC) Increased fertility-related decision-making pressure Greater psychosocial burden (career disruption, parenting, intimacy, financial toxicity) Metastatic & Advanced Disease: What Could Shift Standards of Care William – Founder & VP, Business Development, SBC Why This Matters Because no one attendee can be everywhere at once, I focused on late-stage and translational science that could impact current and near-term standards of care. Evidence-Based Highlights from SABCS 2025 HER2-Positive Disease HER2CLIMB-05 (Phase 3) Tucatinib + trastuzumab/pertuzumab maintenance improved progression-free survival compared with HP alone in advanced HER2+ breast cancer. Suggests an emerging oral maintenance strategy that may reduce chemotherapy exposure. PHILA Trial (Pyrotinib + trastuzumab + docetaxel) Five-year follow-up showed durable PFS and OS benefits vs trastuzumab-docetaxel alone. Reinforces intensified HER2 blockade as a long-term strategy. HR+/HER2− Disease lidERA / giredestrant (oral SERD) Pivotal data support next-generation SERDs as alternatives to traditional endocrine therapy in higher-risk early-stage disease. VIKTORIA-1 (gedatolisib) Showed promising PFS and patient-reported outcomes in PIK3CA–wild-type disease when combined with fulvestrant ± palbociclib. Important because it expands options beyond PI3K-mutant tumors. Neoadjuvant & Local Therapy DESTINY-Breast11 Neoadjuvant trastuzumab deruxtecan regimens achieved high pCR rates in high-risk HER2+ disease. Raises the possibility of chemotherapy de-escalation in select patients. INVINCIBLE-4 (INT230-6, intratumoral therapy) Early TNBC data showed favorable toxicity compared to standard neoadjuvant chemo. Still investigational; phase 3 studies needed. Biomarkers & AI Circulating tumor DNA (ctDNA) and minimal residual disease (MRD) assays showed strong prognostic value in HER2+ disease. AI models integrating pathology, molecular data, and clinical features (including TAILORx datasets) aim to refine recurrence prediction and treatment intensity Surgery, Survivorship & Quality of Life Elisa Herrera– Director of Programs & Events (English & Spanish) Why I Attended Attending SABCS was incredibly energizing, especially hearing the ongoing debate around whether every early-stage breast cancer patient truly needs axillary staging. One of the most compelling conversations centered on balancing clinical necessity vs. quality of life. As treatments become more personalized and systemic therapies more effective, experts are increasingly questioning whether routine axillary staging always changes management—or if, in some cases, it adds unnecessary intervention and long-term side effects. What stood out to me most was the shared acknowledgment that “one-size-fits-all” no longer applies in early-stage breast cancer care. The future clearly points toward risk-adapted, patient-centered decision-making, where staging, imaging, and surgery are tailored—not automatic. Evidence-Based Findings Axillary Staging SABCS discussions emphasized that as systemic therapies improve, axillary staging may not always change management. The field is moving toward risk-adapted surgical decision-making, though no universal practice change was announced. Estrogen Use in Survivors This was one of the most evidence-rich discussions reported: Two large observational studies (N≈45,000 and N≈54,000) and a meta-analysis showed: No increased breast cancer recurrence risk with low-dose vaginal estrogen Pooled recurrence risk: 0.87 (95% CI: 0.67–1.11) Vaginal estrogen users showed reduced all-cause mortality Benefits included improved GSM symptoms via: Lower vaginal pH Improved elasticity and epithelial thickness Consensus: Non-hormonal options remain first-line Low-dose vaginal estrogen or DHEA can be considered, particularly for: HR− disease Patients on tamoxifen Those with lower recurrence risk This session directly challenged fear-based avoidance and reinforced evidence-based survivorship care. Emerging Topics: GLP-1s, Cold Capping, and Beyond Julie Cottrill – SBC Volunteer I enjoyed the networking with other survivors & thrivers. It always seems to energize me and give me new motivation. It’s a new sense of hope that we can continue to improve the quality of life for all breast cancer patients.  A session I missed but hope to catch virtually is the expanding role of GLP-1 receptor agonists beyond weight management, focusing on their potential to improve breast cancer treatment outcomes and mitigate side effects.  New studies suggest it may help reduce certain chemo related side effects such as fatigue, anemia, neuropathy, and nausea and vomiting. Another exciting update was New York is the first state to require large private insurers to cover cold capping effective January 2026.  Genetics & Risk Prediction Carol – SBC Volunteer Breast Cancer Family Registry (BCFR) I attended The Breast Cancer Family Registry: Past, Present, Future Session.  As someone that did not know a thing about breast cancer at the time of my diagnosis, not only did I have to learn everything about my diagnosis but I had to do a deep dive into my family health history.   This session highlighted the evolution and ongoing impact of the BCFR.  This organization has been collecting data for 30 years!  Researchers with this study have been following a cohort of families at risk of breast cancer & created a new personal risk prediction model for people with BRCA1  and BRCA2  mutations. It incorporates family members’ age of cancer onset, which can change risk calculations and is something that other models don’t do. The risk calculator also can also predict how preventative mastectomy and salpingo-oophorectomy at various ages affect cancer risk. This could help people decide if and when to have these procedures.  As we all know, the decisions we have to make after a breast cancer diagnosis are so overwhelming.   My hope is this study continues to help develop better standards of practice for patients faced with BRCA1 and BRCA2 mutations. I found it very interesting that not only do they follow breast cancer patients but also a close family member (ie: mother, sister) as a control.   One session I didn’t get to attend but am very excited to review the recap for is about Acupuncture helping with Chemo Brain.   Overall, the experience of SABCS is hard to put into words.  It was great to meet others diagnosed with breast cancer and see all of the amazing patient advocates together proving that we have a voice worth listening too.  I made so many new connections and can’t wait to see what the next year of science brings to those diagnosed with breast cancer.        Evidence-Based Contributions 30-year longitudinal registry New BRCA1/2 risk prediction model: Incorporates age of onset in family members Models impact of prophylactic mastectomy and salpingo-oophorectomy at different ages Includes unaffected relatives as controls—strengthening risk modeling This work supports more personalized, informed surgical decision-making.

By Holly Sabo For most of my life, cancer was not just a distant possibility—it was a painful reality. My mother and grandmother both lost their lives to ovarian cancer, and deep down, I always feared that my genes might carry the same fate. But no one ever told me about genetic testing, and for years, I was left wondering, worrying, and hoping that I was wrong. It wasn’t until 10 years ago that my primary care provider introduced me to the world of BRCA1 genetic testing  and the preventative screenings available to me. For the first time, I had options. I had a choice. And while the fear of a positive test result lingered, the uncertainty of not knowing felt even heavier. A few years later, I finally found the courage to get tested. The wait was agonizing—five long weeks filled with endless thoughts, bracing myself for whatever truth awaited me. And then, on Christmas Eve, my genetic counselor called. I was positive for the BRCA1 mutation. Fear washed over me, but strangely, so did relief. Knowing meant I could take action. Knowing meant I could take control of my health and future instead of living in the unknown. Previvor: A Word That Changed My Life I learned that being a previvor  meant standing at the crossroads—between risk and prevention, between fear and empowerment. It meant facing tough decisions head-on and choosing what was right for me. Some choose surveillance, some choose surgery , and some choose to wait—there is no right or wrong path, only the one that feels most aligned with your life and values. I chose to have a preventative mastectomy and hysterectomy, which shaped my entire journey.  But beyond my personal story, I want others to know: Genetic   testing   is available—and no one should have to wait years to learn about it. Your choices are yours to make—there is no pressure, only empowerment. Knowledge is power—and with it, you can write your own story. Cancer does not look the same for everyone. Some face cancer itself, while others carry genetic risks that shape their choices. Some support loved ones through treatment, while others advocate for awareness and change.  Raising Awareness, Building Community That’s why I’m sharing my journey—not just for me, but for everyone out there who may be facing hereditary cancer risks, fear of the unknown, and the weight of tough decisions. If my story can help even one person find the strength to learn more about genetic testing, cancer mutations, and their options, then sharing it is worth it. If you’re navigating your own genetic risk, know that you are not alone. If you are searching for answers, keep advocating for yourself. And if you want to honor your journey, find a way that feels true to you. My previvor journey has taught me that I am broken, yet unbreakable. Read More: Understanding Genetic Testing for BRCA1 and BRCA2 Mutations Genetic Testing and Previvorship: Preventive Measures to Reduce Cancer Risk From Curious Click to Cherry Blossoms: My BRCA1 Previvor Story On the Podcast: Breast Cancer Conversations 23andMe Found my BRCA Mutation with Debbie Lesser Share your story, poetry, or art: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By Sara Corckran When I was diagnosed with breast cancer, I thought grit would be enough. And in many ways, it was. It got me to every appointment. It helped me put one foot in front of the other on the hard days. It reminded me to keep showing up for my life, even when I didn’t look or feel like myself. But somewhere along the way, I realized grit could only take me so far. What I really needed was grace. I Used to Think Grit Was Everything Years before cancer, I co-founded a company called Happy YOUniversity. Looking back, I wish we had chosen a different name. It made an unspoken promise: “Come here, and you’ll be happier.” If I could rename it now, it might be something less catchy, like Trailhead: Self-Compassion, Tools, and Awareness. Not as fun, I know. But it would better reflect what truly matters to me today. Positive psychology was at the heart of that company, and I still believe in it. Those practices became my life raft during treatment. I now see them as the grit part of my story. Grit Looks Like This Picking up your journal when you’re exhausted and The Crown  is calling your name. Focusing on what’s going well when your life feels like it’s falling apart. Walking into a room when you don’t feel like yourself. Letting people in and sharing what is actually happening in your life. I was raised on grit. Maybe you were too. I grew up hearing: “Happy hands are busy hands.” “Pull yourself up by your bootstraps.” We were raised to believe that being productive was the highest measure of a worthy day. My brother cut lawns and saved every penny for a car we nicknamed The Rice Burner because of its exceptional gas mileage. I pitched in what I could, money saved from my first job at age 13 working at The Movie Company, checking in and out VHS tapes and restocking the candy shelves after school. I hope you remembered to “Be Kind and Rewind.”  My older sister babysat the neighborhood. All three of us helped to raise our littlest sister who was 13 years younger. We stayed busy. We were doers. And I was so good at doing that I forgot how to just be. For most of my life, it felt more natural to complete a task than to sit down with a book. Grace… Now That’s a Different Story What is it, really? It’s what you give your best friend when she accidentally stands you up for lunch. It is how you move on when your husband didn’t exactly nail Mother’s Day. It’s what you offer a friend eight weeks postpartum when her jeans still don’t fit. We are so good at generously offering grace to others. But giving it to ourselves? For many of us, that is a non-starter. It’s hard to have grace when we’re so busy having grit. It feels scary. What happens if I take my foot off the gas? And even scarier… if the car keeps going, then why have I been pedal to the metal? What if everything falls apart? Or maybe worse, if it doesn’t fall apart, then what is my value? What happens when I stop trying so hard to be happy and keep things normal when they are anything but? Will I ever get back up? Where does grace fit in a life like that? Where does grace fit in for you? What if grace is the missing piece to our lives? If you are on a quest to find more peace, more ease and less judgment and comparison, it’s worth exploring grace. What if Grace Is the Missing Piece? If you’re in treatment or recovery, you already know grit. But grace? That’s the part that lets you exhale. Seven Ways to Weave Grace into Your Life (Inspired by Brianna Wiest’s book This Is How You Heal ) Stop pretending you’re okay. Try saying, “This is hard, and that’s okay.” Stop fighting what is. Surrender isn’t giving up, it’s loosening the grip. Speak to yourself like someone worth rooting for. If your self-talk is harsh, soften it. Go at your own speed. Healing has no deadline. Sit still. Five quiet minutes, no phone, no list, just breathe. Honor the in-between. You ’re allowed to be a work in progress. Listen for the whispers. Grace is quiet, subtle, compassionate. For me, grace began with a pause, a breath, listening to my body, and doing what it asked. It’s how I speak to myself now, with understanding, acceptance, and value. A Question for You Where in your life are you relying on grit when grace might serve you better? Wishing you a little grace this week. About the Author: Sara Corckran  has been on both sides of a cancer diagnosis—first as a caregiver, then as a patient. The first time, she didn’t have the tools to cope. The second time, she did—and it made all the difference. Now she shares what she’s learned in her book   Grit and Grace  and in her free weekly newsletter,   The Heron’s Perspective . She believes that while pain is part of life, suffering doesn’t have to be the whole story. More from Sara: The Tools That Changed Everything No Pink Here: What October Really Feels Like for Breast Cancer Survivors Read More: 7 Ways to Prioritize Your Health After Breast Cancer Treatment A Disabled Clinical Psychologist’s 6 Tips for Living Well with Breast Cancer Forest Bathing for Cancer Patients: How Nature Nurtures Healing, Resilience, and Wellbeing On the Podcast: Breast Cancer Conversations Beyond One and Done: The Realities of Surgery and Reconstruction Share your story, poetry, or art: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By Jill Rackham Life beyond cancer has given me a little Demon in my head. Having a mirror held up to my own mortality left me with some feelings I dread. Christmas makes my Demon super active and full of thought. Reminding me of my challenges and the new normal cancer brought. At times the Demon goes quiet but Christmas seems to make him talk nonstop. Reminding me of Christmases gone by, the overwhelming thoughts make my mind want to pop. Sadness, anxiety, disbelief and a feeling that life can be so unfair. The Demon is great at bringing me these, but at Christmas... really I despair! So onwards and upwards in life I always strive to go. Hoping the Demon will leave me so happy thoughts can flow. I'm wishing for a joyful time this Christmas by creating new memories with my family. Going for walks, lots of chatting, eating chocolates, watching a film or three. Each Christmas post cancer definitely has a new meaning to me. I'm much more reflective and appreciate life, embracing all that is to be! So along with many others living beyond cancer we do the best we can. Holding onto a positive mental attitude I think is the best plan. Share your poetry: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

Life threw me a curveball, and I handled it the best way I could, with dignity and grace. The mountains I had to climb now seem like bumps in the road. I was given terrible news — "you have cancer," but it wasn't the end of the world. I underwent multiple rounds of chemotherapy, I had been pricked and probed with shots and IVs, I had invasive surgery, and was zapped with radiation for 6 weeks. All of these things were part of the plan; I knew they were coming. But what I was not expecting was how challenging returning to the workforce would be. This was supposed to be the easy part, right? The return to work (albeit while still undergoing treatment) is now just the next phase in the recovery process. However, I think there are a few things to acknowledge, maybe break down some misnomers, and offer personal advice as I reflect on my first week back. 1. You are Back At Work, So are You All Better Now? The good news, yes, I am better and able to return to work, and that is a great sign! However, depending on one's cancer journey, there still may be a lot that the person is enduring behind the scenes. Some people may be open about their health journey with coworkers, while others may keep it close to the vest. I think it is a good reminder that even though someone may look "healthy" and "all better" on the outside, there may still be a lot of pain on the inside. In my case, I am glad to be returning to work because, yes, things are returning to normalcy. But that doesn't mean I'm magically "cured." There are a number of "medical cocktails" I continue to take to ensure that breast cancer does not recur! 2. Understanding Your Sense of Self The American Cancer Society suggests that returning to work helps promote a sense of self, purpose, and reminds one that they have a life outside of cancer. There are a lot of benefits that come from these daily interactions with colleagues. However, I want to bring to light that it can also be scary, and that's OK too! As someone who went through cancer treatments, I do feel different. I do feel like my perspective on life has changed, and although the circumstances of cancer were not ideal, this experience has forever changed and shaped me. There is acceptance and peace that comes with understanding yourself as a survivor. 3. Those Who Plan Achieve Rethink Pink offers 5 valuable tips for transitioning back to the workforce, and planning makes all the difference! Work can be stressful and induce anxiety on a normal day, let alone returning to work after going through such a life-altering health event. A few tips that have helped me profoundly were centered around planning! For example, I rehearsed scripts. I knew a lot of colleagues would be visiting my office to say hello. This was fantastic, but I had to decide (prior) what information about my journey I was going to share. Did they need all of the grueling details? Probably not. I picked a few funny stories about losing my eyelashes, or the new "punk rock" hairstyle I was rocking, and everyone had a good laugh. You cannot take yourself too seriously — humor is key! Also, be sure to connect with your boss and HR. You have a lot of rights and protections, which can also help if you are looking for accommodations as you return. In the U.S., we have the Rehabilitation Act and the Americans with Disabilities Act (ADA). Some people also benefit from the Family and Medical Leave Act (FMLA). 4. Managing Chemo Brain What was once debated as not being a legitimate side effect from chemotherapy, oncologists now acknowledge that chemo brain is a real condition impacting one's cognitive ability for up to 6 months post-treatment, according to a 2017 study . We all want to perform well at work. Therefore, I have started to incorporate a few daily habits to offset this side effect. First, I am not afraid to take notes or even ask colleagues if I can record a meeting, so that I can listen to it again later and ensure I have captured all of the key takeaways. I also set aside time at the end of the day to make a task list of where I left off on various projects and what priorities are set for tomorrow. This has been extremely helpful because now, when I walk into my office each morning, all of my notes, tasks, and to-dos are right there waiting for me. It not only helps with chemo brain, but it also reduces stress and anxiety! 5. Finally, Let's Take Some Time to Breathe The breath is one of the most powerful tools we have and is often underutilized. When was the last time you took a deep breath? You know, one of those breaths that fills up your entire lung cavity and travels deep down into your inner belly? Unless you are taking a big sigh of relief, or in a yoga class, taking big belly deep breaths are not unconscious acts. When you take longer inhales and exhales, you are immediately sending signals to your mind which trigger the nervous system to return to a state of calmness . While we may not all have time to attend a yoga class or sit still and meditate, I would recommend practicing breathing techniques if you notice yourself becoming anxious, heading into a meeting, or before responding to emails. Within seconds, you become more mindful and back in control, empowered to tackle the day! #BreastCancer #Returningtowork #Work #Cancer

It is well documented that physically active women have a lower risk of breast cancer than do others who are not. Thus, it stands to reason that physically active breast cancer survivors may reduce the risk of cancer’s return and dramatically improve quality of life. As always, consult your oncological team before starting out on your fitness program. Exercise is Safe Per Breastcancer.org (one of the attached links below), “a roundtable convened by the American College of Sports Medicine in 2010 reviewed available research and concluded that exercise is safe during and after all breast cancer treatments (as long as you take any needed precautions and keep the intensity low) and improves physical functioning, quality of life, and cancer-related fatigue. There is also evidence that exercise can help breast cancer survivors live longer and lead a more active life.” Risk Reduction According to Cancer.gov (link below), “studies show that physically active women have a lower risk of breast cancer than inactive women. Physical activity has been associated with a reduced risk of breast cancer in both premenopausal and postmenopausal women; however, the evidence for an association is stronger for postmenopausal breast cancer.” This study further elaborates on how exercise can reduce the risks of cancer and its recurrence: Exercise has a number of biological effects on the body, including: Lowering the levels of hormones, such as estrogen, and of certain growth factors that have been associated with cancer development and progression Helping to prevent obesity and decreasing the harmful effects of obesity Reducing inflammation Improving immune system function Cognitive Impairment (“chemo brain”) Furthermore, a new study (found in the ScienceDaily.com link below) “indicates that cancer patients and survivors have a ready weapon against fatigue and "chemo brain": a brisk walk. Their data suggests “that being more physically active could reduce two of the more commonly reported symptoms in breast cancer survivors: fatigue and cognitive impairment." Cognitive impairment, such as memory problems or shortened attention spans, is a common complaint among cancer patients and survivors, and is thought to be similar to decline due to aging. Fitness Recommendations With the above (and below) referenced studies in mind, we at Survivingbreastcancer.org are recommending the following exercise possibilities: Walking: The health effects of a brisk walk cannot be overstated, notably for cognitive impairment, but also for the muscular and circulatory systems. Yoga: This discipline combines stretching, deep breathing, and toning of the muscular system, and offers a wonderful way to relax the nervous system. Meditation: According to Laura-Sage (link below), meditation can effectively reduce stress, anxiety, depression, fatigue, and fear of recurrence. It can also help reduce hot flashes. Weight resistance & training program: In another recent study, researchers looked at data from the Physical Activity and Lymphedema (PAL) trial to determine whether slowly increased weight lifting could increase muscle strength among breast cancer survivors and help them avoid frailty and maintain physical function. Aerobic and cardio training (swimming, running, elliptical, stairmaster, etc.): Lastly, another recent study (for the NIH) showed that a “10-week moderate-intensity aerobic exercise program significantly improves quality of life and physical functioning in breast cancer survivors.” Please note that further long-term studies have been recommended. We found the following links to be beneficial: https://www.cancer.gov/about-cancer/causes-prevention/risk/obesity/physical-activity-fact-sheet https://www.scribd.com/document/268275865/Breast-cancer-and-physical-activity https://www.acefitness.org/education-and-resources/lifestyle/blog/6753/exercise-for-breast-cancer-survivors https://www.sciencedaily.com/releases/2017/07/170725122242.htm https://www.cdc.gov/physicalactivity/basics/pa-health/index.htm#ReduceCancer https://www.cancer.org/treatment/survivorship-during-and-after-treatment/staying-active/physical-activity-and-the-cancer-patient.html http://www.breastcancer.org/tips/exercise https://community.breastcancer.org/forum/44/topics/836196 http://www.lbbc.org/building-and-restoring-physical-fitness-after-breast-cancer https://www.mindbodygreen.com/articles/what-you-need-to-know-about-exericse-and-cancer https://www.huffingtonpost.com/laura-sage/5-benefits-of-meditation_b_10617412.html https://www.cancer.org/.../study-weight-lifting-helps-breast-cancer-survivors-stay-health... https://www.ncbi.nlm.nih.gov/pubmed/25313756

One of the many FAQs that we have been asked at SurvingBreastCancer.org is “How should I deal with side effects, i.e., to lessen their impact and eliminate them entirely?” There are many potential side effects to chemotherapy. The shortened list includes nausea, vomiting, loss of appetite, dehydration, mouth sores, fatigue, diarrhea, constipation, water retention, “chemo brain,” and hair loss. Of course, you should always notify your oncological team of any side effects that you may be experiencing. In this blog, I’d like to address six of the most commonly experienced side effects that I and my cohort have faced, and typically how we have dealt with them. 1. Hair Loss Hair loss is quite common and can be quite an emotional tug. This occurs in most cases within 6 weeks from the start of chemo, depending on the treatment, and should start to return shortly after the cessation of chemotherapies. There are a few notable ways to lessen the impact, but typically, if you are going to lose your hair, it may behoove you to take a graduated approach. I’ve found that cutting my hair quite short after the start of chemo was a very helpful first step. Cutting my hair short was something I would never do otherwise, so this was my chance to try out a fun pixie cut with no risks! Shortly after starting Adriamycin and Cytoxan (AC) treatment (aka the “red devil”), clumps of my hair started to fall out. At this phase, I wasn’t sad to lose my hair; rather, I was frustrated at how annoying it felt every time I put on a shirt and wisps of hair would fall out; every time I ran my fingers through my hair, more wisps would fall out. Imagine those tiny little hairs after a haircut falling out everywhere, shedding like a cat. So, feeling empowered to take control of the situation, I shaved my head. Don’t spend tons of money on this type of haircut. I literally went to a barber shop and asked them to shave it all off. The barber was initially confused and asked if I wanted any sort of etching or designs. As innocent as the question was, I explained that I was sick and I was taking it all off! Other, less drastic remedies include: Use mild moisturizing shampoos and conditioners – avoid harsh chemicals Use a soft brush Wear a scarf, wig, or hat. I chose to rock the bald look, and it helped me to accept my condition. Note: I also shared my diagnosis and treatments on YouTube and other Social Media, so this choice may not be for you. While everyone associates losing hair on your head as the only place you will lose it, don’t be surprised if you start to lose hair on your legs, under your arms, as well as your nose hairs, eyelashes, and eyebrows, etc. Take care of your scalp by lubricating and protecting it from the sun. I found tea tree and castor oil to help my hair follicles grow faster! 2. Fatigue Physical fatigue is a common side effect and typically starts when commencing chemotherapy. Ongoing exhaustion and/or overall weakness can prevent one from performing normal/routine tasks and activities. And just as importantly, it can contribute to the emotionality of dealing with cancer. What follows is a list of ways to mitigate fatigue: Rest is more than appropriate and should become part of your everyday routine. Naps are highly encouraged Additionally, an exercise regimen is strongly recommended (be sure to consult with your medical team to determine the limitations of your workouts. Walking and swimming are two of the best ( See our previous blog on exercise ). As counterintuitive as it sounds, getting 30 minutes of exercise a day helps combat the symptoms of fatigue. Don’t be afraid to ask for help, i.e., grocery shopping, housecleaning, errands, etc. Proper nutrition/diet goes a long way to alleviate fatigue (see our nutrition blog). Also, lean on your support group, parents, significant others, or roommates to be your advocates. I have a hard time saying no, and I love being social, having friends over, and entertaining. However, my caregiver got to play the “bad cop,” reminding people that I am fighting cancer, and sometimes the answer had to be “she needs her rest.” Personally, I came to really appreciate this. It took the pressure off of me knowing that my caregiver had my best interest and realized when I was easily becoming overtaxed. 3. Nausea and Vomiting Stomach issues represent another side effect and are attributable to chemo damage to healthy cells in your stomach and gastrointestinal tract. The following recommendations may offset both: Avoid hot spicy foods. Eliminate or greatly reduce the garlic, chili oils, and hot peppers, and cool down your exotic foods. I have gone so far as to request mild Indian, Thai, and Mexican foods, which is something I never thought I’d do. Bland foods are easier to handle. Easy examples include: Saltine crackers Toast Cereals This is a case where bland is better. Another trick I found helpful was to suck on hard candies and utilize ginger in my juices and smoothies. I also found it important to reduce the size of your meals. Eat smaller portions and more often more often. Drink plenty of water. I’ve gone so far as to measure my water intake and set goals that approached 120 oz daily. Hydration is key! If these natural remedies do not help and the nausea persists, talk to your medical care team. They may prescribe steroids to help manage this condition. I was on Decadron (http://www.chemocare.com/chemotherapy/drug-info/decadron.aspx), Compazine, and Zofran, which helped me tremendously! Acupuncture and natural supplements may also help. More on these treatments in a follow-up blog. 4. Mouth Sores These are common inside the mouth and along the throat. These can be painful and make it difficult to swallow. The ways to mitigate and or remediate include: Gargling with salt water Avoiding hot spicy foods Staying away from tomato-based sauces Refraining from tobacco and or minimizing alcohol Use a non-alcohol-based mouthwash Change your toothbrush often 5. Gastrointestinal Irritation (Diarrhea/Constipation) can result from chemotherapy damage to the lining of your stomach and intestines. Severe diarrhea can be quite dangerous, and one should get treatment ASAP to resolve it. Typically, patients may experience watery stools at first, and the following remedies may eliminate or reduce the severity: Stay hydrated. As mentioned above, drink plenty of water. Minimize milk and other dairy products. Try yogurt for its bacterial cultures. Avoid fatty food, choose easy-to-digest foods, and eat smaller portions several times daily. A lot of times, breast cancer patients mention that their diets have changed, and that is because so much of our bodies are changing at warp speed as chemotherapies are working their magic. If you are in your first few weeks of a chemo regimen, it may take trial and error to see which combinations of foods agree with your stomach. Here is a list of foods that can cause binding and lead to constipation: Bananas Red Meat Dairy Fried foods Processed grains Here is a list of foods that can cause loose stools and lead to diarrhea: Dairy products Greasy foods Onions Corn Citrus fruits 6. Hot Flashes As a premenopausal woman of 36 years old, I cannot leave off the list of chemo side effects, the dreaded hot flash! Chemotherapy destroys fast-dividing cancer cells, and according to Breastcancer.org, it can be harmful to your ovaries. As a result, younger women may notice that their menstrual cycle stops and they experience medically induced menopause. Unlike older women who enter menopause over the course of several years, younger women are thrown into this state in a matter of weeks! As such, menopause-like side effects associated with chemotherapy treatments can be surprising and unpleasant. One of the most common is hot flashes. While it is not clear what exactly causes hot flashes, studies suggest that it is most commonly due to chemical changes in the body. Therefore, if you are estrogen receptor-positive (ER+) and your treatment plans require the reduction or elimination of estrogen and/or ovarian suppression from Lupron or Zoladex , then it stands to reason that medically induced menopause and hot flashes are common side effects. Hot flashes (or night sweats) are sudden changes where you may feel red, hot, flushed, or even experience severe sweating anywhere from 1 to 10 minutes. While there is no magic cure for eliminating hot flashes, here are a few tips on how to reduce their severity: Notice what triggers hot flashes. A lot of times, it can be linked to certain foods like spicy entrees, garlic, caffeine, or alcohol. Dress in layers. Invest in tank tops or t-shirts that are made with wicking material; they are loose and wick away sweat to help you stay comfortable. I personally loved PJs from Cool Jams . Take a cool shower before bed; this will take away any sweat from the day, so you are not freezing at night, and also helps you remain cool so you can fall asleep. Finally, discuss with your medical care team! While they may not be able to prevent hot flashes, they may offer a prescription which could help, for example, Gabapentin. There are many more tips and many more side effects one may be exposed to when experiencing chemotherapy. Post a comment below of what you are experiencing, and I will be sure to include information in our upcoming blogs on chemotherapy. In the meantime, here is a list of helpful links that I found quite helpful: 12 Tips & Tricks to Get You Through Chemotherapy - My Cancer Chic www.mycancerchic.com/12-tips-tricks-to-get-you-through-chemotherapy/ Ten tips for getting through chemo - Breast Cancer Care https://www.breastcancercare.org.uk/information.../ten-tips-getting-through-chemo 11 Tips to Get Through Chemotherapy - Oprah.com www.oprah.com/health/11-tips-to-get-through-chemotherapy Tips for Managing Chemotherapy Side Effects: Nausea and Vomting https://www.webmd.com/cancer/tips-for-managing-chemotherapy-side-effects Ten Tips for Surviving Chemo | Breast Cancer Support - Ready for ... https://cancerplanners.com/ten-tips-for-surviving-chemo-for-cancer-patients/ 10 Tips to Help You Through Chemotherapy – Health Essentials from ... https://health.clevelandclinic.org/2013/12/10-tips-to-help-you-through-chemotherapy/ Tips for Handling Chemo Side Effects - Side Effects - Guide2Chemo ... guide2chemo.com/tips-handling-chemo-side-effects

It can be overwhelming attending doctor appointments week after week with a plethora of information thrown at you each time, new vocabulary, new side effects to worry about, and additional risks all come flying at you at warp speed. I always came prepared to my appointments with a notepad and pen, taking copious notes, and asked for correct spellings of technical terms, knowing I would come home and Google absolutely everything! Oftentimes, our discussions in the oncology office revolved around discussing the various approaches to treating my cancer, along with weighing the benefits and risks. About one year ago, as we were discussing my surgery options, my nurse came in and handed me this pamphlet and said we should talk about Lymphedema. My head was already spinning as I was nervous about my upcoming surgery, and like a deer in headlights, I now had to worry about this potential risk. While having lymph nodes removed does not always result in developing lymphedema, it quickly became clear that this was something I would need to look out for and manage for the rest of my life; it is something that can develop immediately after surgery, or even months or even years down the road. My only real experience with lymph nodes was usually associated with when my primary care physician was checking if I had any swollen glands around my neck and to ensure I didn’t have strep throat. I was pretty clueless about the lymphatic system, how it worked, and the benefits it has on the body. What is the Lymphatic System? The Basics Our bodies have a network of lymph nodes and lymph vessels. This system collects and carries a watery, clear lymph fluid, much like how veins collect blood from distant parts of the body and carry it back to the heart. This fluid consists of proteins, salts, and water, as well as white blood cells, which help fight infection. What Causes Lymphedema Lymphedema is a chronic condition in which excess fluid collects and causes swelling, generally in the arms or legs. Lymphedema is most commonly caused by the removal of, or damage to, your lymph nodes as a part of cancer treatments. It results from a blockage in your lymphatic system, which is part of your immune system. The blockage prevents lymph fluid from draining well, and the fluid buildup leads to swelling. According to the National Cancer Institute, anywhere from 5-17% of women who have a sentinel lymph node biopsy develop lymphedema. Among women who have axillary lymph node dissection, the percentage is higher — from 20-53% — and the risk increases with the number of nodes taken out. Not surprisingly, the risk is even higher if you receive radiation to the breast, chest, and underarm area. My Story with Lymphedema As things are shaping up, I shouldn’t be surprised that I was a prime candidate for developing lymphedema. I had an auxiliary lymph node dissection resulting in 16 lymph nodes being removed, as well as 30 rounds of radiation! Prior to my surgery, my oncological team took baseline measurements using the L-Dex machine. If you are having any lymph nodes removed, I highly recommend asking your care team about getting baseline measurements taken. This will allow you and your team to catch any changes post-surgery and catch lymphedema early if it is developing (sometimes swelling isn’t obvious to the naked eye). The procedure is painless and only takes a few minutes. It’s worth it! Lymphedema Signs and Symptoms After surgery, things seemed to be going well, and I thought I was in the clear until one day I started to notice the following symptoms: Heaviness in my arm Tingling in my fingers (that sense when your arm falls asleep) Discomfort raising my arm above 90 degrees My watch and rings no longer fit comfortably I looked down, and my hand definitely looked swollen; I was developing stage 1 of lymphedema. Below is a picture of my emerging lymphedema There are additional symptoms that I didn't experience but that patients should be aware of, including: Burning or itching sensation Skin redness Difficulty seeing veins or tendons in hands and feet Restricted range of motion Recurring infections Lymphedema Diagnosis and Treatment While lymphedema is not curable, it is manageable (phew). I took matters into my own hands and called my hospital to schedule an appointment with a lymphedema specialist. I’ve been seeing my specialist now for 4 weeks, and the improvements are profound! It was recommended that I wear a compression sleeve daily, even during my workouts, to help reduce swelling. Additionally, I do lymphatic massage (also known as manual lymph drainage [MLD]) twice a day. The lymphatic massage plays a crucial role in rerouting stagnated lymphatic fluid. The goal is to stimulate the lymph vessels and lymph nodes and to redirect the lymph flow around these blocked areas into more centrally located healthy lymph vessels and nodes. At night, I do not wear my compression sleeve, but rather, I wrap my hand to prevent swelling. While my bedtime routine is now about an additional 30 minutes to account for managing lymphedema, I have to say, my arm feels so much better, and I am confident that I will remain at stage 1 so long as I continue to take care of my skin, arm, and manage the swelling! For more information on treatment for lymphedema, please click here .

By Ashlee Duttweiler Navigating the world of healthcare is complex. I know from personal and professional experience that a diagnosis of cancer (of any kind) changes your life. Not only does it affect the cells of your body, but it also changes everything. That is why holistic care is so important, and that is one of the reasons I got involved with the Surviving Breast Cancer organization. My name is Ashlee. I met Laura at a fundraising dinner for an amazing lab making huge strides in cancer research (shout out to Dr. Whetstine and Whetstine Labs! ). As soon as she started telling me about the work she was doing in terms of breast cancer survivorship, I got super excited. Holistic health was my platform in the healthcare field, and cancer has touched family and friends surrounding me. In addition, I care a lot about supporting and advocating for patients and caregivers, which is why I am planning to pursue a career in social work. It is my desire that through my education and involvement with this amazing organization, I will be able to bring hope and light to the darkness that often goes along with health struggles. With that in mind, I’ve put together a few tips for navigating the world of healthcare that I have learned from working with doctors (professionally and personally) that will help and encourage you as you begin surviving cancer and navigating the healthcare system. 1. Advocate for Yourself (Or find someone who will do it for you) The healthcare field is overwhelming. As a patient, you have rights and are not entirely subject to what the doctor initially tells you. If you have questions, ask them and don’t stop asking until you get answers and you have a full understanding. It is usually helpful to have someone accompany you to doctor appointments or talk to insurance providers on your behalf; this person may ask questions that you might not have thought of, or help you remember all the information that is being thrown your way. Laura said she always brings a notepad and paper to all of her appointments, she takes notes, and asks for correct spellings of medicines so she can do her research once she returns home. In addition, if you do not feel like you are being treated properly or fairly, speak up! While it can be scary, you are allowed to take ownership of your care. This point is also important because sometimes it can feel like it is you (the patient and your family) against the doctors and insurance companies. Professional advocates are fairly new to the scene, but take advantage of this option! It puts someone in your corner whose sole purpose is to help you understand, check bills and information, and get you the fair treatment that you need. 2. It is OK to Get Second (or third) Opinions The more eyes that are looking at something, the better! If you don’t feel right about something or don’t like a particular doctor, it is totally fine to look elsewhere for care. There is not just one doctor who deals with your particular type of case, so if you are not satisfied, it is ok to look elsewhere. One thing that is important to remember in this case, however, is that doctors are experts in their field. My point in saying this is that they do know what they are talking about, but it is perfectly acceptable to get as many eyes on your case as you can so that you are able to make an informed decision about all of your health care options. Looking for Second or Third Opinions? Survivingbreastcancer.org has partnered with Driver (as a startup based in San Francisco), which can assist you in setting up appointments for second opinions throughout the U.S., regardless of where you are located! In addition, Driver offers several other support services, such as managing medical records, access to clinical trials, and helping our Surviving Breast Cancer community pay for these services through a GoFundMe campaign. They are donating the first $100 to your goal! Got questions on this – definitely reach out to Laura@survivingbreastcancer.org for details! 3. Do your Research There are so many great resources available specifically for you! SurvivingBreastCancer.org , for example, has a focus on survivorship from day one and beyond, but there are many organizations that will cater to your needs, whether that be financially , house cleaning, or child care, to name a few, and who want to help you through this difficult season. You are not alone! Join our Surviving Breast Cancer community. #BreastCancer #secondopinions #healthcare