By Shannon Malburg Today Margie walked in the door, Saw me and said: “You’re still alive!” (We hadn’t seen each other in over a year) She came toward me, all embodied surprise and joy The biggest smile (Everyone should be smiled at like that) Held my shoulders out from her in a pre-hug And beamed at me “I’m so glad” she said “Good job” (The words were a hug As much as her arms were) But it wasn’t until later How this hit me I felt proud of myself Of my being-aliveness In a way I hadn’t Maybe Ever? But certainly not since cancer When every intuition-steeped choice Still yielded mixed results Less than hoped outcomes It’s back It’s spread Inching closer and closer to un-aliveness Disappointment Disillusionment Failure Failure Failure Despair But Yes! Here I am Still alive Good job intuition Good job body Good job invisible forces What a grace to feel proud of us Even if it’s fleeting A respite from the judgement And shame Of not healing right Share your poetry: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetups Free Events

Cancer brings with it a particular kind of loneliness that is difficult to describe to anyone who hasn’t felt it, and difficult to forget for anyone who has. SurvivingBreastCancer.org  |  By William Laferriere I just read this heart-wrenching meme on social media and it spoke to me as an epiphany (I apologize for failing to capture the meme’s author name before it disappeared). There is a variety store somewhere — the kind with fluorescent lights that never quite commit to brightness, where the refrigeration units hum a low, tuneless note all night, and the hours between 2am and 5am move like water through sand. A clerk works the late shift there. She has, most nights, almost no one to talk to. One night, a customer came in at an hour when almost no one does. They bought something small — it doesn’t matter what. And before leaving, they asked the clerk if she would write something on the receipt. Not a coupon code, not a return policy reminder. Something human. Anything at all. She did. Maybe it was a few words about the night sky. Maybe it was something she'd been thinking about and hadn’t had anyone to say it to. The receipt was thermal paper, the kind that fades, the kind nobody keeps. She handed it over and the customer left. Then another customer came in. Word had spread, the way quiet things sometimes do — not virally, not loudly, but person to person, in the particular telegraph of people who are awake when the rest of the world is not. They asked for the same thing. She wrote again. And then another person came, and another. The late-night store became, without anyone planning it, a gathering place for the people who live in the margins of the social day — the ones who work odd hours, who can’t sleep, who have nowhere else to be, who simply needed someone to acknowledge that they existed. One handwritten note on thermal paper, and somehow a community had formed around it. Most of us know that feeling — of needing someone to just notice we’re here. The loneliness that doesn’t have a name. Cancer brings with it a particular kind of loneliness that is difficult to describe to anyone who hasn’t felt it, and difficult to forget for anyone who has. It is not the ordinary loneliness of a quiet weekend or an empty apartment. It is something more layered and more specific. There is the loneliness of sitting in an infusion chair surrounded by other patients, all of you tethered to your poles and your drip bags, each person sealed inside their own private reckoning — and not being able to say a word to any of them, because what is there to say, and where would you even begin. There is the loneliness of coming home the night of your diagnosis and watching the people who love you most suddenly go quiet, searching for something helpful to say and finding nothing, their silence not unkind but vast, a new distance that opened without warning. They love you and cannot reach you. There is the loneliness of being finished with treatment while still feeling broken in ways that don’t show. The world, which has been watching and worrying, begins to exhale and drift back to ordinary life. People say you must be so relieved. And you are, partly — but you are also frightened in a way that doesn’t diminish when the IV comes out, and grateful that the hard part is over while also grieving that it happened at all, and unsure who you are now on the other side of it. The world expects celebration. You are standing in your kitchen at noon, still in yesterday’s clothes, not sure how to explain any of this. And then there is the 3am loneliness — the one that belongs entirely to darkness. The fear that arrives when the house is quiet and there is no distraction left and the mind turns, as it always does at that hour, toward the hardest questions. That loneliness has no audience. You don’t want to wake anyone. You’re not even sure what you would say. So you just sit with it, alone, in the way that so many people with cancer have sat with it — this particular 3am silence that has no good answer, only the long wait for morning. There is also, and this one is perhaps the loneliest of all, the loneliness of feeling like a burden. Of watching the people who love you rearrange their lives and wear their worry quietly and not wanting to add one more phone call, one more request, one more difficult conversation to the weight they’re already carrying. So you say you’re fine. You say you’re managing. You carry as much as you can alone, and the aloneness compounds. What the research knows, and what it costs It turns out that loneliness is not merely painful — it is physiologically costly. Social isolation is associated with increased inflammation, suppressed immune function, and worse outcomes across a range of serious illnesses, including cancer. Patients who lack strong social support are significantly more likely to experience depression and anxiety during treatment. And in survivorship, perceived social connection is one of the most powerful predictors of quality of life — not the number of friends, not the frequency of social events, but the felt sense that someone, somewhere, knows what you’re going through and is present with you in it. This is not a minor footnote. It means that connection is not a comfort measure. It is a health measure. The loneliness that cancer patients carry is not weakness or self-pity. It is a real and serious condition, with real and serious effects — and it deserves to be taken as seriously as the physical protocols of treatment. What the clerk understood The store clerk didn’t design a program. She didn’t convene a task force or launch a campaign. She just looked at another person who needed to be seen, and she wrote something true on a piece of thermal paper. That was all. And it was enough to change the quality of someone’s night — and then another person’s night, and then another. What SurvivingBreastCancer.org does is not so different, at its core. The support groups, the community programs, the spaces where people with breast cancer can find each other — they exist because someone understood that patients deserved a place where another person would write something human on the receipt. Not a pamphlet. Not a list of resources. A real acknowledgment, from one person to another, that says: this is hard, you are not invisible, and you do not have to carry this part alone. The formats are different from a late-night variety store. But the impulse is the same. The door is open If you have been sitting with your loneliness quietly — not wanting to explain it, not sure it’s bad enough to warrant attention, not wanting to be a burden even to people whose entire purpose is to be present for this — you don’t have to explain anything.  You can just come in. SBC’s support groups and community programs ask very little of you at the door. You don’t have to be articulate about what you're feeling, or ready to share, or certain that what you’re going through qualifies as hard enough. You just have to show up at the hour when you need someone to write something human on the receipt. That’s what we are here for. Read More: Living Well with Breast Cancer How Cancer Trauma Can Impact Your Life and Ways to Move Forward The Psychological Impact of Breast Cancer: Strategies for Coping On the Podcast: Breast Cancer Conversations The Hidden Trauma of Breast Cancer: PTSD, Fear, Triggers, and Healing Share your story, poetry, or art: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast  Weekly Meetups Free Events

A daily pill has helped transform outcomes for hormone receptor-positive breast cancer, but navigating its side effects takes real-world know-how. Debbie Ciak's story shows why listening to your body and speaking up can make all the difference. SurvivingBreastCancer.org  |  Breast Cancer Conversations | By Laura Carfang Debbie Ciak, 75, lives outside Pittsburgh. She was diagnosed in early 2023 with stage 2B ER-positive, HER2-negative breast cancer after noticing an indentation in her breast one morning after a shower. Debbie's Ki-67 score was 57%, indicating an unusually fast-growing tumor. She underwent a single mastectomy and radiation. When her oncologist strongly recommended Verzenio to reduce her high risk of recurrence, Debbie didn’t hesitate. It was her second month on Verzenio when Debbie first noticed something was off. She’s a walker, and she began noticing that climbing hills was harder than it used to be. Then came the stairs. “I started to notice going up steps... just a little bit of shortness of breath,” she recalls. She reported it at her next appointment. Nothing was done. What followed was a months-long medical odyssey that would take Debbie through an ER visit on the day before Thanksgiving, three different pulmonologists, a bronchoscopy with ten biopsies, and a diagnosis of drug-induced pneumonitis (permanent lung scarring) that her pulmonologist now describes as feeling like “a straight jacket” around her lung. She will never be able to take a fully deep breath again. Debbie tells her story not to frighten anyone, but because she believes deeply that if she had known what to watch for, things might have gone differently. “You’ve got to listen to your body,” she says. “When something’s telling you it’s not right, don’t just let it go. You’ve got to pursue it until you get some answers.” Extra protection from Verzenio Verzenio (abemaciclib) belongs to a class of drugs called CDK4/6 inhibitors. By blocking proteins that cancer cells depend on to divide and replicate, these therapies can meaningfully slow or stop tumor growth in ways that hormone therapy alone cannot. For patients with HR-positive, HER2-negative breast cancer at high risk of recurrence, like Debbie, whose Ki-67 score came back at 57%, signaling an exceptionally fast-growing tumor, Verzenio can represent a crucial extra layer of protection. As Debbie understood it, Verzenio was her best extra line of defense against recurrence. The drug carries known side effect risks, but she was “ willing to take that risk,” she says. “I want to continue to live my long, full life.” But she also walked into treatment without a full picture of what the drug could do, and she believes that gap cost her. For many patients, Verzenio is a pill taken every day for years. What it does to the body day-to-day matters enormously. The side effect everyone talks about — and how bad it can actually get Ask anyone on Verzenio about side effects and the conversation starts in the same place: diarrhea. Debbie is no exception. “The diarrhea was terrible — three or four times a day, no warning. I literally almost could not leave my house.” She became severely dehydrated, her kidney function became elevated, and her hemoglobin dropped. She needed five hospital infusions for dehydration in the first month alone. All the while, her weekly check-in calls from the nurse practitioner came back marked “normal, normal, normal.” GI symptoms are real and, for some patients, genuinely disabling in the early weeks. There are strategies that help (careful hydration, anti-diarrheal medications started proactively, smaller meals, easy-to-digest foods) and for many patients, symptoms do ease as the body adjusts. But Debbie’s experience is also a reminder that “common” doesn’t mean “minor,” and that patients shouldn’t have to white-knuckle through symptoms alone. Practical strategies to manage GI side effects Ask your oncology team about anti-diarrheal medications before symptoms start Stay well hydrated throughout the day; consider using electrolyte drinks Eat smaller, more frequent meals rather than large ones Focus on low-fiber, easy-to-digest foods during flare-ups Track symptoms carefully: timing, frequency, and triggers to help your team respond faster One note worth flagging: Debbie had been prescribed Verzenio at the highest starting dose of 150mg. She had questioned this at the time, but was told the logic was that if problems arose, the dose could be reduced. Since then, she says, protocols have shifted — many providers now start patients at lower doses and titrate up. If you’re starting Verzenio, it’s worth asking your oncologist about current dosing approach and what flexibility exists. The side effect that changed everything: ILD Among Verzenio’s less common but more serious potential side effects is interstitial lung disease (ILD), also called pneumonitis. In plain language, this is inflammation in the lung tissue that can reduce its flexibility and make breathing feel more labored. The FDA issued a warning about this risk in 2019. It appears in the drug’s prescribing information. It is mentioned, in small print, at the bottom of Verzenio advertisements. Debbie had sat through a mandatory hour-and-a-half session with a pharmacist and nurse practitioner before starting the drug. She does not remember anyone discussing shortness of breath as a serious warning sign. When she arrived at the ER with respiratory symptoms two months into treatment — at the same hospital system where her oncologist practiced, with access to her full medication record — the clinical team checked for a pulmonary embolism, ruled it out, and sent her home with an antibiotic. Nobody called a pulmonologist. Nobody flagged the drug she was taking. “I think there was a total unawareness of the possibility of what the drug I was taking might have been doing to my lungs.” — Debbie Ciak It was Debbie herself who, over that Thanksgiving weekend, searched “FDA alert Verzenio” and found the 2019 warning. When she called her oncologist Monday morning and shared what she’d found, she remembers “total silence on the other end of the phone.” Her oncologist told her not to take the drug again. By the time Debbie reached the third pulmonologist — the first two either didn’t know about CDK4/6 inhibitor-related pneumonitis or treated it generically — the damage was done. Steroids that might have helped were too late. She now has pulmonary fibrosis and has completed 12 weeks of pulmonary rehabilitation. She has undergone regular pulmonary function tests ever since. “Now it's in my chart,” she says. “Nobody will ever prescribe anything like that to me.” Tell your care team right away if you notice new or gradually worsening shortness of breath, especially with activity that felt easy before; a dry cough that’s new or persistent; chest tightness or a sensation of not being able to take a full breath; noticeably reduced stamina on walks, stairs, or daily tasks. These symptoms have many possible causes, but they require prompt evaluation, not a wait-and-see approach. What Debbie wishes the system had done differently Debbie is measured and thoughtful when she talks about this. She isn’t angry. But she is clear about the gaps she experienced: a care system where specialists operated in silos, where an ER team looked for the one thing they were asked to rule out and stopped there, where a known FDA-listed drug side effect wasn’t on anyone's radar in the room. “Everybody’s in their own little silo and only looking at one thing,” she says. “The nurses at a different hospital would have been more on top of what was going on. It’s a big lack of education piece.” She later participated in a medical webinar on ILD and CDK4/6 inhibitors, as the patient voice alongside an ER physician, a radiologist, and a medical oncologist. All three agreed: this is a significant and underrecognized issue, and clinicians need better awareness of what to look for when imaging a patient on these drugs. Movement as medicine: Debbie’s path forward Here’s the part of Debbie’s story that matters just as much as the warning: she didn’t stop living. Despite permanent lung limitations, she walks. She practices restorative yoga. She does Pilates. She is enrolled in a cancer and exercise research study through Colorado State University. She credits the SurvivingBreastCancer.org virtual exercise program and a local Pittsburgh organization called Cancer Bridges with being central to her recovery. “Exercise has been very important to me in my recovery — which is the one big positive change since having cancer, because I was not an exerciser before,” she shares. Her pulmonologist put it bluntly: “You can’t be sedentary. It would only make it worse. You have to keep active.” She schedules her classes the way she schedules medical appointments, because that’s what it takes. “I’m one that’s had to put it on the calendar.” For anyone who struggles with motivation during treatment, that framing alone is worth something. Questions for your next appointment Ask your oncologist before or during Verzenio treatment What starting dose is recommended for me, and what’s the reasoning? What respiratory symptoms should I watch for, and how urgently should I report them? If I go to an urgent care or ER, what should I tell them I’m taking? Are there supportive medications I should have on hand from day one? What is my bloodwork monitoring schedule, and what are you watching for? Should I be tracking symptoms between visits? How detailed should those notes be? The bottom line Verzenio is an important drug. For patients at high risk of recurrence, it may be the difference that matters. Debbie knew that going in — and still believes she made the right choice in trying it, even knowing how it ended for her. What she wants other patients to have is what she didn’t: a full picture, a care team that communicates across specialties, and the confidence to keep pushing when something feels wrong. “Keep asking those questions,” she says, “and don’t stop until you get the answers.“ Survivorship is not passive recovery. It is active navigation. Debbie Ciak is proof of that. Listen to the full episode: Debbie Ciak tells her complete story — including her diagnosis, treatment, the Thanksgiving ER visit, and what she’s learned about advocacy — on Breast Cancer Conversations , the SurvivingBreastCancer.org podcast. Listen below, or wherever you listen to podcasts. This article is for informational purposes only and does not constitute medical advice. Always consult your oncology team regarding treatment decisions and symptom management.

Every breast cancer donation gives hope. You can get involved and make an impactful and meaningful difference. Donate to breast cancer support programs. Lifestyle & Wellness Resources Programs Content Library Podcast Download the App Subscribe to the Newsletter Make a Gift More Build the Future of Breast Cancer Survivorship From diagnosis through long-term survivorship — and for those living with metastatic disease — SBC ensures access to credible education, AI-informed navigation tools, and year-round community support. Donate Now Become a Monthly Supporter Why Your Gift Matters Financial, Emotional, & Wellness Programming Your generosity ensures that individuals navigating breast cancer, from early-stage through metastatic disease, have access to trusted education, meaningful connection, and supportive wellness programming. Trusted Information & Educational Resources A breast cancer diagnosis brings more than medical challenges. Your gift enables us to provide over 400+ free support groups, integrative oncology–inspired classes, and community spaces designed to reduce stress and improve outcomes. Survivorship Programming & Tools Your contribution provides expert-led webinars, evidence-informed articles, podcasts, and tools that help individuals make informed decisions about their care meeting people where they are and supporting long-term survivorship, and quality of life. $50 $100 $250 By The Numbers Our Impact Read the Report 190,000 Podcast Downlaods Educational content reaching thousands of listeners 8,000 People Serviced Through our 350+ virtual programs offered each year. 1 Million Website Interactions Engaging website visitors through AI driven technologies supporting education, information, and empowerment Monthly Giving Circle Monthly giving strengthens our ability to plan, innovate, and respond to emerging survivorship needs. Reliable funding allows SBC to scale responsibly toward our $1M national operating model in 2026 and beyond. More Ways To Give Legacy Giving Let's Talk Asset Based Giving Let's Connect By Check Checks can be made out to "SurvivingBreastCancer.org" and mailed to 5 Cedar Street Unit 1, Roxbury, MA 02119 Venmo Find us on Venmo at @SurvivingBreastCancerorg Stocks & Securities We accept Donor Advisor Funds, Stocks, and Securities. Contact Us

Our breast cancer poetry lab is a space for patients and survivors to express their emotional journeys. Read from others' works and share yours! Breast Cancer Poetry Writing is a great form of therapy and healing. Enjoy the original compositions from our Survivingbreastcancer.org Community! Be Inspired. Submit Your Poem Expressive Writing How can we dial down the noise in our daily lives to listen to the story emerging within ourselves? In this interactive session, we will come together to reflect on the personal narratives that give shape and meaning to our lives and find community in the experiences we share. Multiple Dates Expressive Writing with Thomas Dooley Mon, May 11 Online Event More info RSVP Multiple Dates Expressive Writing with Thomas Dooley Mon, May 11 Online Event More info RSVP Multiple Dates Reflective Writing for Metastatic Breast Cancer Fri, Jun 12 Online Event More info RSVP 1 2 3 4 5 Welcome to the Poetry Lab Welcome to the Poetry Lab Welcome to the Poetry Lab Welcome to the Poetry Lab Dream Dream Dream Dream Create Create Create Create Express Express Express Express Multiple Dates Expressive Writing with Thomas Dooley Mon, May 11 Online Event More info RSVP Multiple Dates Expressive Writing with Thomas Dooley Mon, May 11 Online Event More info RSVP Multiple Dates Reflective Writing for Metastatic Breast Cancer Fri, Jun 12 Online Event More info RSVP