https://bizups.info/legal/203/fahttps://bizups.info/news/1109/When someone asks me what gift to send to someone who has been recently diagnosed with breast cancer, I always suggest a nice pair of pajamas. For me they tick all the boxes for compassionate gift giving -- self care, comfort and practicality. And if you are searching for the perfect pair, I have to recommend KickIt's PJs. Recently, I was introduced to Dr. Cindy Trice, a veterinarian turned entrepreneur, fellow cancer survivor and the co-founder of KickIt Pajamas. She kindly sent me a pair of her PJs and I love them so much I just have to devote a blog to them. So that’s saying something. They are practical for sure, with all kinds of helpful features for someone recovering from a major surgery such as a mastectomy. But they are also stylish and so comfortable I hardly want to take them off. I’ll add that I’m not being paid to say any of this! Disrupting the Hospital Gown Market Cindy’s inspiration to create beautifully comfortable post-surgery pajamas came from her own experience with hospitalization. A “cervivor” of cervical cancer, Cindy (like most of us) was horrified at the thought of having to wear the standard issued gown while in hospital. She was young and dating her future husband at the time. Understandably she wanted to look her best, even while in hospital. Any of us who have had the experience of wearing those rumpled, chilly, blue, hard to tie up, hard to keep on, let’s show those undies to the world hospital gowns will empathize with Cindy’s dilemma. Fun fact: The hospital gown was invented by Ellen Dougherty in 1910 and designed for bedpan use. That’s right…the universal hospital, one-size-fits-all gown has been in use and humiliating patients around the world for more than 100 years . Cindy and her team at KickIt set out to disrupt the hospital gown market in four distinct ways. Stylish, Practical and Comfortable Hospital and Recovery Pajamas I own the KickIt recovery pajamas, and only wish they had been in my life two years ago when I was recovering at home from my double mastectomy, sporting a pair of chest drains which were literally and figuratively a pain to deal with. KickIt’s PJ’s are super soft and moisture wicking (also lovely for those of us dealing with menopause hot flashes), offer a generous fit (I am a size six and the small offers ample room), and are very flattering to wear to bed or lounging around the house. Hidden, built-in drain pockets, which can be accessed from the exterior pocket is a brilliant feature, and completely invisible once the need for drains is done. KickIt’s hospital PJs and gowns are equally comfy and stylish, but include additional features with snap sleeves for IV, PICC line access, and full coverage adjustable bottoms (bonus, no bare backside!). You can see the entire collection here The lines also come in an attractive array of colours from navy, to cornflower blue, to dusty rose and more. Not sure which pair suits you or your friend the best? KickIt also has a gift-giving guide you can consult. https://bizups.info/news/928/If there’s any proof that even the healthiest, most athletically fit people can be unlucky enough to develop breast cancer, let’s take a look at some Olympians who have battled the disease and become breast cancer thrivers. Cancer doesn’t care. It doesn’t discriminate. You can do everything right in terms of fitness, lifestyle and diet -- yes, even be an Olympian and win an Olympic gold medal -- and you can still be diagnosed with breast cancer. As my oncologist said to me, it just often comes down to rotten luck. That said, the grit, tenacity, resilience and mental and physical toughness it takes to manage through diagnosis, treatment and life after treatment are exactly the characteristics that define Olympic athletes. I’ve said it before and I’ll say it again, cancer people are badass and among the toughest and most resilient people I know. Meet a few of these amazing women here. Olympian: Kikkan Randall American cross-country skiing athlete Kikkan Randall is an Olympic gold medallist, five-time Olympian and World Champion. On May 31, 2018 just over 3 months after achieving her lifelong goal of winning an Olympic gold medal Kikkan was diagnosed with Stage 2 triple-positive breast cancer. “To say that it rocked my world is an understatement. I went through all the phases. At first I experienced disbelief. Like, ‘No. This can’t be right. Not me. I can’t have this. I then shifted to anger and frustration, like, ‘This isn’t fair I have done everything right. This can’t be happening to me.’ It went against everything I believed to be true,” said Kikkan. She now encourages young women to be breast aware, get screened and to stay as active as possible if diagnosed. Olympian: Chaunte Lowe Chaunte, a Team USA high jumper, is an American Record Holder, a 4-time Olympian, a 3-Time World Championship medalist, and 12-time US National Champion. Her cancer journey began when she found a tiny lump in her breast in 2018 while doing a self-examination. Her first doctor did not diagnosis it as cancer, however. A year later, she felt the same area and the lump felt bigger and she sought a second opinion. What followed was a diagnosis of triple-negative breast cancer in 2019, followed by a double mastectomy and six rounds of chemotherapy. "When I heard those words, I was extremely devastated," she shares. "I couldn't imagine that a world- class athlete — [and] the healthiest that I had ever been — would face something like cancer." Olympian: Novelene Mills Novelene an Olympic sprinter was diagnosed with breast cancer a month before the London 2012 Olympics. Living privately with her diagnosis, Novelene and her relay team went on to compete and win the bronze medal at the London Olympics. Three days after arriving home from the competition, she was in surgery. She went on to have a double mastectomy and reconstruction. I sat in the doctor's office and I listened to everything he had to say. I didn't cry until I went outside. That's when I really fall apart. I felt like a baby. I was like, "This can't be real. It's impossible." Said Novelene in an interview with ESPN, “I work out hard, I eat right. I've done everything to keep a healthy body. I don't drink. I don't smoke. I don't do none of that. And for this thing to come in my body and take control of it … You know when you tell a friend something and they betray you? That's how I feel. Like this thing just stabbed me right in the back. Like it just didn't care who I was. It just wants to take control of everything and didn't ask permission. It didn't know that I have things to do. Olympian: Erin Kennedy Erin, a gold-medal medal para-olympian and coxswain for Team Great Britain was 29 when she was diagnosed with triple-negative breast cancer. Like Novelene, Erin decided to fly out to the World Cup in Serbia the following day after her diagnosis, and while in chemotherapy, competed in and won the European Championships in August 2022, before taking a break from rowing to focus on her treatment plan. She made her return to international competition in May 2023 exactly a year to the day after her diagnosis, following recovery from a double mastectomy just four months earlier. Olympian: Rachel Kochhann Brazilian rugby star Rachel’s mother died of breast cancer, so she knew she was of a higher risk, and therefore, made self-exams a part of her body awareness routine. That said, she was still shocked to learn in 2022 that she too, had been diagnosed with breast cancer. After finishing her chemotherapy, she resumed training at the three-month mark and returned to play, but had to relearn many of the skills needed on the field of play including passing and scratching. Given the physical nature of rugby, which involves tackling one’s opponent, Rachel also faced additional risks as bones can be weakened from breast cancer treatment. Despite this concern, she has been able to return fully to the pitch, crediting her regime of strength training which has helped her remain strong and resilient. Competing at the 2024 Summer Olympics in Paris for Team Brazil, Rachel will become the first rugby sevens player from Brazil to play three times in the Olympic Games, together with Luiza Campos. She was also Team Brazil’s flag bearer alongside sprint canoeist Isaquias Queiroz. https://bizups.info/news/927/A guest blog by Christine Jenkins On May 27, 2022, I found out my breast cancer had returned. Learning to advocate for myself, after learning late in life I was autistic, has given me the strength, self-awareness, and tools to stand up for myself. When I was suddenly deposited back on the breast cancer treadmill, I needed to call upon the same skill set when it comes to breast cancer treatment and reconstruction, as society (and doctors) will try to force you to go with the flow. As an adult on the autism spectrum, I also can’t help but see many parallels in the way we must openly and actively advocate for ourselves, especially when we opt to go against what society deems to be the “typical” norm. My message to you is don’t give in to that pressure. Know yourself and assess the personal cost in every situation. My all-clear 5-year mammogram was postponed due to the COVID-19 healthcare backlog. After getting the bad news from two spring mammograms and the resulting biopsy, my breast surgeon offered a single mastectomy. I chose instead to be done with my breasts, which I frankly never wanted, and had a double mastectomy on July 4, 2022. Quick decisions about breast reconstruction Decisions were quickly expected of me. Now that breast reconstruction is a valid option (at least in more prosperous nations), surgeons push you to maintain your ‘womanliness’, sometimes via immediate implant, or by the insertion of spacers to expand the skin for later surgery. You may not be given much time to consider your options. The life-preserving operation must happen swiftly, and often too soon for women to weigh alternatives to the ‘figure-conserving’ new norm. Many revisions can be an unforeseen part of breast mound reconstruction. Sometimes implants must be removed as they fail or disappoint—this is called an explant. ‘Going flat’ immediately is rarely offered as a choice. More often, the breast cancer patient has to mention this option to her surgeon. The term Aesthetic Flat Closure (AFC, now found in the U.S. NCI guideline below) must specifically and repeatedly be stated. That said, satisfaction among women living flat is later found to be high. The plastic surgeon I consulted in June 2022 had a completely different interpretation of ‘aesthetic.’ He kindly offered to artistically rebuild me, mostly using flaps from my tummy or lower back. For me, this meant more surgeries, more painful scars, more years lost…I politely declined. Even the post-operative camisole provided to me was for a C/D cup because that was my old size. Rather than argue with her, I let the bra fitter assume I would get reconstructed. Canadian advocate Ellyn Winters said this: “I think doctors are a little in love with putting Barbie back together again. And the medical community doesn't see AFC as being a reconstruction. And so, I think we need to start thinking about going flat, and the form of flat that I have, as being a completely valid viable reconstruction option." "I'm not encouraging anybody to go flat, necessarily. That's my decision. But…you shouldn't be ashamed." Photo credit: Dana Donofree, AnaOno An actual survivor modelling the Leslie bra There is now more help for women who choose to live flat. However, that choice is not always made available by surgeons. So women have to do their own research. Flat Friends UK, Not Putting on a Shirt, Flat Closure Now and my spectrum sister Nicki H gave me courage and support for my decision. You could compare this to a neurodivergent person who resists pressure to fit in, and sometimes resists adult social skills training, or what I’ve come to call “ABA in the Wild.” To foob or not to foob Decades ago, breast cancer patients had few choices to save their lives. They were left gouged, misshapen, lopsided. But now we’ve gone to the other extreme—just because we can be reconstructed, should we? For me, the freedom to choose AFC and get it (which is not a given, witness many cases of ‘flat denial’ where patients wake up with an undesired outcome), is akin to asking for accommodations from the workplace so I can thrive autistically. We want to be given all options and make the best decision FOR OURSELVES. Must women pad themselves out or get surgical breast enhancement? I say no. Jessica Chastain was on Instagram in July 2022 to actor Florence Pugh: “Why is it so threatening for some men to realize that women can love our bodies without your permission? We don’t belong to you.” I experienced a similar situation recently when a male medical student examined my healed mastectomy scar before my surgeon arrived (I was not asked if the student could attend.) The student asked why I wasn’t getting rebuilt. He mistakenly assumed that was the reason for my visit. We know that most of the lingerie and indeed fashion designers are male (even the Muse mastectomy bra line— although it had survivor input.) Is padding out my surgically flat chest just another example of having to cater to the ‘male gaze’? Is this my new form of camouflage, to conform to a societal norm? Companies who profit from women at this vulnerable time, pressure people undergoing major lumpectomies, single or double mastectomies, to maintain the appeal of a busty profile or a ‘pleasing contour.’ Pleasing to whom? I refuse to exist for the male gaze. Flatties who Foob* (Facebook group) group expert Anna H. often models her fashion finds three ways: all flat; padded out; or even one side flat, one side foobed. It is a whole new lifestyle choice. For a breast cancer diagnosis or autism, knowledge is power A cancer diagnosis and an autistic identification are both situations that affect one’s quality of life. Their outcomes are unclear unless all the facts are presented. In both instances, I have come to recognize that knowledge is truly power. All Portraits, etc. from TheBreastandtheSea.com © Miana Jun *Foob (N): Term popularized by breast cancer survivors to mean any false or fake boob. Some definitions assume they are temporary pending reconstruction. To foob can be a verb, as in to dress wearing foobs. Flatties like me have a variety of choices, both weighted and unweighted. No more sweaty silicone! I hope you never have to go through this turmoil, especially more than once, but today there is help if you know where to look. Some who paved the way for me: The late Donna Williams/Polly Samuel, and my very much alive autistic friends Nicki Hastie, Ann Memmott., Julie Roberts, Dianne Saunders. In the general community, Janet Lemoine and Nancy Thomson of Knitted Knockers of Canada, and Andrea Douglas of Ottawa. Cancer made us travelling companions, members of a club we never wished to join. I encourage all readers who have to face this to raise their voice, or pen, against the stereotypes impacting adult autistics and those affected by society’s image of breasts. Dedicated to the late Erika Karrei: “I went through cancer solo, but I didn’t go through it alone.” RIP 1962-2022 About the author Christine Jenkins (she/her) has been an Autistic advocate for many years, and most recently around issues related to late female diagnosis, gender bias, and autistic aging. She is a co-author of the anthology Spectrum Women: Walking to the Beat of Autism (2018) and has presented in Canada and internationally. Christine is an author and peer reviewer for the journal Autism in Adulthood and edits other books and articles. She started her own business during the pandemic, Christine Jenkins AUsome Consulting, at tinyurl.com/cjAUsome. You can reach here here cjAUsomeConsulting@gmail.com https://linktr.ee/christineajenkins REFERENCES:: Baker, J.L., Attai, D.J. ASO Author Reflections: Patients Who Go Flat After Mastectomy Deserve an Aesthetic Flat Closure. Ann Surg Oncol 28, 2506 (2021). https://doi.org/10.1245/s10434-020-09489-0 Lee CN, Pignone MP, Deal AM, et al. Accuracy of Predictions of Patients With Breast Cancer of Future Well-being After Immediate Breast Reconstruction*. JAMA Surg. 2018;153(4):e176112. doi:10.1001/jamasurg.2017.6112 and other papers by Lee et al. [*compared with No Reconstruction.] https://www.patientpower.info/breast-cancer/living-with- breast-cancer/breast-cancer-patients-opting-to-go-flat-after-mastectomy This article says 25% of American women go flat. The Globe and Mail article on Ellyn says only 1 in 7 Ontario women do. We need to be given all the options.Ellyn Winters article in People: https://people.com/health/breast- cancer-ellyn-winters-feels-powerful-after-double-mastectomy/ Video with photo shoot: https://people.com/health/ontario-woman-is-not-hiding-after-breast- cancer-diagnosis-and-double-mastectomy/ https://bizups.info/news/926/Guest post by Brandie Smith Reaching 40 felt like a milestone where I could finally look back and appreciate the life I had built and the person I had become. Instead of dreading the big 4-0, I embraced it. I was proud of my life — a beautiful daughter, a supportive husband, a career I enjoyed, and a strong and healthy body. To mark this new chapter, I scheduled my first mammogram on the day after my birthday. It felt symbolic, a rite of passage into this new decade. But the excitement faded when that first mammogram led to a follow-up ultrasound. My 40s were not turning out as I had envisioned. In fact, it was the beginning of a breast cancer journey I never saw coming. Laying on the table for the ultrasound, I couldn’t shake the feeling that something was wrong when the technician started examining the lymph nodes in my armpit. Imagining my 3-year-old daughter’s face was the only thing helping me hold back a wave of panic. When the doctor came into the room, she spoke with a clinical calmness that felt surreal compared to the whirlwind of emotions I was experiencing. She said she was confident one of the masses in my breast was cancer, along with an enlarged lymph node. She assured me I was in good hands for the treatment ahead. Returning home, I broke down in tears. My husband rushed downstairs sensing something was wrong. Through my sobs, all I could manage to say was, “I have breast cancer”, over and over. And as if that wasn’t enough, the next day brought the unexpected blow of being impacted by a mass layoff at my company. Breast Cancer Caused the Loss of Who I Was Within the span of just 24 hours, everything I had worked so hard to build - the life I had proudly embraced - felt like it unravelled in an instant. All that I knew myself to be slipped away as I transitioned from full-time and mom and professional to full-time patient. Had I not been diagnosed with cancer, losing my job would have felt like a personal blow. But with the reality of life-or-death decisions looming, I found myself oddly detached from it. After a few hours, I began to see the layoff as a blessing in disguise. I knew myself well enough to realize that I would have tried to keep working through treatment, pushing myself too hard and spreading myself too thin between work, home, and healing. When my oncologist asked about my job during our first visit, she actually said it was ‘great’ that I had been laid off—now, I could focus solely on myself. But that didn’t make the loss of my professional identity any easier to bear. I had always taken pride in being a hard, reliable employee. Now, suddenly, I was faced with empty days stretching ahead of me. I felt frozen during those six weeks of waiting for treatment to start. I didn’t have a job to go to, and my daughter was in daycare. I spent my days sitting on the couch, googling tips for chemo, cold capping, and surgery options, but I couldn’t bring myself to look up what my diagnosis of Triple Positive Invasive Ductal breast cancer actually meant. That was a reality I wasn’t ready to face. I decided to share my diagnosis publicly on the day I started treatment. Normally, I’m a private and independent person, but I realized that if there was ever a time to lean on others, this was it. I opened up about the good, the bad, and the ugly, and my community rallied around me in ways I hadn’t expected. I tried to keep things light for my daughter, turning the loss of my eyebrows into something funny so she wouldn’t be scared. Despite cold capping, I still ended up with bald spots on my crown and a receding hairline. Most days, I felt awful and kept to myself in my bedroom, or on the couch during my better days. But on my best days, I pushed myself to get out of the house, finding some solace in painting pottery. The chemo took a toll, and I ended up hospitalized twice due to side effects. I could feel myself getting slower, weaker, and my thoughts and speech became muddled. What hurt the most was feeling like I was sitting on the sidelines during my daughter’s precious early years. I wasn’t the one bathing her, reading her a bedtime story, or tucking her in at night. Instead, she was the one coming into my room to kiss me goodnight, or to hug me in the morning before heading off to daycare. I wasn’t taking her to gymnastics anymore—I was seeing photos of the adventures my husband took her on. I refused to give up our snuggles and smooches, even if it meant I was sick more often because of it, but that was a price I was willing to pay. I had to constantly remind myself that sacrificing one year during my daughter’s childhood to treatment was a trade-off for many more years together. During the month between my last chemo session and my surgery, I threw myself into planning and enjoying every Christmas event I could with my family. I felt like I had lost so much time, and I wasn’t going to let another moment slip by. I had five months to decide on my surgery, and while I knew in my heart that going flat with a double mastectomy was the right choice for me, my mind kept second-guessing itself. I was frustrated that I even had to make this decision in the first place. A week before surgery, I came across and read Flat and Happy: Mastectomy and Flat Closure - A Personal, Practical Guide by Katrin van Dam. The book was an incredible resource, laying out the data-informed pros and cons of lumpectomies, single mastectomies, double mastectomies, and all the reconstruction options in detail. As I read, I had an aha moment: no matter what choice we make, we’re all grieving a loss, and there’s no ‘right’ or easy path. Everyone’s journey is difficult, but in different ways. Realizing this helped me feel at ease with my decision. It was all going to be hard, so I might as well choose the option that gave me the most peace. The double mastectomy with aesthetic flat closure was challenging in ways I hadn’t fully anticipated. I was prepared for the pain and soreness, but nothing could have prepared me for the emotional impact of seeing a flat chest where my breasts had been just days before. These were the breasts the world had told me defined my womanhood, the same ones that had nourished my newborn baby. My daughter asked me when my new ones would grow back and I gently explained that they wouldn’t. She got upset, but I told her that now when we hug, our hearts get to kiss each other. That made her smile, and now she often asks for a heart kiss. My Journey of Change and Empowerment Beyond the fear of dying, my biggest worry was that I’d come out of this as someone who had lost the ability to see the positives in life. I was exhausted, both physically and mentally, and couldn’t envision a future where things ever felt normal again. The thought of living in constant fear of recurrence was overwhelming. I remember asking every Pink Sister I met how they managed to get to the other side. My mind just couldn’t grasp it. Now, a year later, I’m proud to say I’ve reached that other side, and I’ve gained a deeper appreciation for the everyday moments. The monotonous tasks, the frustrating moments with my daughter, even the challenges of job hunting—these are the parts of life that remind me why I endured everything I did over the past year. In those moments, I take a breath and remind myself: this is why I fought so hard, this is what it means to be alive. I lost a lot of myself during chemo, surgery, and radiation, but I’ve developed new parts of myself that I genuinely love and feel passionate about. I joined a club no one wants to be part of, but I found that it’s filled with the most incredible members. I found my community of Pink Sisters who helped me through the darkest days, and now we’re there for each other through all of life’s ups and downs. I’ve become a living reminder to everyone I know about the importance of getting yearly mammograms and understanding the implications of dense breast tissue. Every time a friend tells me she’s scheduled her mammogram, or someone thanks me for educating them about dense breast tissue, I feel like I’ve found my purpose in helping other women. I’ve also unexpectedly become an advocate for going flat—not to push anyone in that direction, but to ensure every woman facing this difficult decision is aware of all her options and feels empowered to make the choice that’s right for her. Too often, doctors don’t fully present this as an option, and I want to make sure that every woman knows she has a voice in her own journey. If you’re concerned about your journey’s impact beyond the physical changes, here are some suggestions to help you in protecting your spirit and preventing resentment. This journey, though challenging, can lead to new discoveries about yourself—whether it’s a new passion, deeper connections, or a re-defined sense of purpose. Your future might look different than you planned, but it can still be beautiful. Be gentle with yourself as you navigate this path, allowing space for both grief and growth. Remember, you are more than your diagnosis, and there’s so much ahead waiting for you. About the author Brandie Smith is a breast cancer survivor and seasoned user experience researcher. As a voice for the user in her professional life, she now channels that same passion into patient advocacy, empowering women with the knowledge and support they need to make informed health decisions. https://bizups.info/news/925/I caught up with my cousin this week. The latter half of her career was spent doing trauma work with a major airline. She’s also experienced profound grief. She was incredibly helpful to me when I was first diagnosed and processing the fear I felt. She helped me understand that due to my breast cancer diagnosis, I was experiencing trauma for the first time. Last night she relayed a recent conversation she had with a first responder. The person wanted some advice about how much detail they should share about a traumatic death. Her response, which I thought was spot on, was to use this phrase: “How much do you want to know?” The right knowledge at the right time It is the same thing with a cancer diagnosis. How much do you want to know? And when do want to hear that information? In my book Flat Please, I talk about the power of knowledge and the fact that the knowledge that comes has to come at the right time. My dad was a police officer. He spent most of his career as an investigator. He liked problem-solving, research and leg work. So do I. My immediate response to my cancer diagnosis is to start reaching out to survivors to gather information about the journey I’m now on. People who have travelled this path will tell you that Google is not your friend. Searching the Internet can be scary for someone newly diagnosed with breast cancer, or any cancer. Sticking with credible, legitimate sources, such as the Mayo Clinic, Rethink Breast Cancer, the Canadian or American Cancer Societies, or Johns Hopkins is important. Even so, wading into information about stages, treatments and side effects is overwhelming and alarming. Some of those early conversations I had with friends who are survivors — and there are a lot of them — were immensely helpful. Others scared the living daylights out of me. There is one particularly terrifying conversation with a well-meaning survivor known for her blunt talk. She is a five+ year survivor so in medical terms, a success story. She underwent a single mastectomy, followed by chemotherapy and radiation and eventually, a DIEP reconstruction of her breast. This is a relatively new reconstruction technique where they take tissue from your body to remake you a breast. “Don’t expect your clothes to fit you anymore,” she warns. I was shattered by the thought. I love my fashion and my overflowing closet brings me joy. “Don’t bother asking for a double mastectomy. It’s Canada and the health-care system will only pay for one side,” she continued. As I relayed in a recent blog, the thought of being lopsided and single- breasted did not sit well with me. “The biopsy feels like someone slammed a car door on your finger.” That seed of discomfort plagued me for weeks to the point where I was terrified of the procedure (to reassure you, it was not painful at all). “Reconstructive surgery is very painful, far worse than the mastectomy,” she then added. Yikes. Point taken and filed away. And finally, “If you have chemo, you are going to feel like shit for six months and then you’ll feel better.” While I hope chemo is not in my future, I am realistic enough to take this piece of news on the chin. What I came to understand this harsh truth, two weeks out from diagnosis only added to my anxiety. It isn’t that I recommend sticking your head in the sand. Quite the opposite. Information is empowering. But protecting yourself and managing your anxiety, particularly in the early stages of a diagnosis is critical. When it comes to breast cancer and its related information, everything in its own time. Choose your sources of information, and your confidantes, carefully. For some, diagnosed, there is a very real temptation to deny reality. I hear from women all the time who simply do not want to know the details of their diagnosis or treatment. It is is a natural phase of the grieving process to go through a stage of denial. “This can’t be happening to me,” we all say to others or to ourselves. However, that’s not necessarily a good place to stay either. Without knowledge, you are limited in your ability to participate in decision- making about your care, hold your own in conversations with your doctor, ask appropriate questions and thereby, advocate for yourself. Shared decision- making works - in theory In today’s highly strained healthcare system, clinicians are grappling with a large number of patients who need care while dealing with a lack of resources and a limited capacity to serve. They are doing their very best, but the sheer volume of demand means that even the most caring clinicians have little time to devote to each patient. If you show up to your appointment well-researched and armed with questions, your doctor will 100% take the time to respond. That was always my experience. But if you take a more passive stance, don’t expect them to volunteer anything but the necessary information. As such, many of your questions may go unanswered, and you may find yourself on a care pathway that is less than ideal. In an ideal world, clinicians subscribe to the SHARE model of care. Using this five-step process for informed decision-making, clinicians will explore the options with their patient, comparing the benefits, harms and risks, to have a meaningful dialogue. There are, however, some assumptions built into this model of care. First, it assumes the patient understands the rules of the game. As a first- time patient in the healthcare system, I instinctively wanted to know and soaked up as much information as I possible. But as I indicated above not everyone responds this way. Patients are shocked, not thinking straight, and scared. This model assumes they and their families have done sufficient homework to be able to actively participate in this dialogue, understand what they are being told, and know what questions to ask. Second, the patient feels confident in participating in this shared decision-making. A friend of mine’s mother, diagnosed with breast cancer after me, was bewildered by this approach. She was old school, brought up to respect a doctor’s authority and word. She just wanted the surgeon to tell her what to do. Others with a cultural background where authority is never challenged will also struggle with this shared model of care. When dealing with a cancer diagnosis No doctors can tell you where the finish line is, or how you will get there. In the diagnostic process, information is gathered and revealed to both the physician and patient in steps. These steps take time. The biopsy results might tell them what kind of cancer I have, but not how to proceed with surgery. For women with underlying genetic mutations such as the Breast Cancer Gene (BRCA) or Ataxia-telangiectasia mutated (ATM) gene, the biopsy may not be enough. These women may require further testing to determine the best next steps. If you don’t ask the questions, don’t expect answers As a newbie to breast cancer, I was surprised to learn there is no single playbook to follow. Treatment is determined by elaborate algorithms and workflows that take into consideration numerous factors including the type and stage of cancer, the size and number of tumors, the rate of cell division, the person’s age, menopausal status, and more. No one sits you down and tells you any of this. They just assume you know. And there’s still enough residual paternalism in the medical system that if you don’t ask, they may assume you don’t want to know. Or, they’ll ask, “do you have any questions for me?” not realizing that we respond with a blank stare because we simply don’t know what questions to ask. That is why I liked my cousin’s response to the first responder’s question: “How much do you want to know?” It puts the patient in the driver’s seat. It invites them to join in shared decision-making (or not). And gives them a sense of control about how much information they want, and when they want it. https://bizups.info/news/924/A guest post by Amanda Thomas A breast cancer diagnosis is terrifying at the best of times. Getting that diagnosis while pregnant with my second child was next-level fear. I was not just worried about my health, but that of my unborn baby. I had gone through a couple of scares concerning my breast health. I’d find a lump, go to the doctor, and have a mammogram, ultrasound and biopsy only to be told it was benign. So when I found this latest lump during the first trimester of my pregnancy, I will admit I ignored it for some time. I assumed that it would be the same as the last few times and nothing of concern. However, the worry was always in the back of my mind. So I finally decided to go to the doctor and put my concerns to rest. I saw the breast surgeon. They did an ultrasound, and a couple of weeks later, they performed the biopsy. Then on September 5th last year, I found out through the patient portal I had triple positive, invasive ductal carcinoma breast cancer. Immediately, my mind began to race. I was pregnant. What would this diagnosis mean for me and my pregnancy? Diagnosis and treatment in the second trimester of pregnancy Things moved quickly. I had my first appointment with my medical oncologist three days after receiving my diagnosis. It’s crazy to express gratitude under the circumstances, but the timing worked in our favour. The doctor explained to me that they would not do chemotherapy on a mother in her first trimester. The fact I had waited a few weeks to get my lump examined meant my diagnosis didn’t come until my second trimester. That meant we could move forward with some form of treatment. While it was unsafe for me to have Taxane-based treatment, I was able to receive Doxurobicin (also called AC or the “Red Devil”) chemotherapy. After the second infusion, I expressed concern to my doctor that my lump was getting larger, not smaller. We continued with chemotherapy but rather than wait, I was also booked for a single mastectomy in December. Here again, things did not go to plan. By my surgery it was determined my tumour had grown to 14.5 centimetres and there was lymph node involvement, Stage 3A. Even more concerning, the pathology report showed they did not get clear margins. I could hear the angst in my doctor’s voice when she shared the news. The cancer was growing fast and not responding. They needed to up the ante and quickly. It was decided I would undergo a C-section at 34 weeks. And I would start full chemotherapy four weeks later, as soon as I had recovered. My stress levels were incredibly high. I kept asking myself, ‘What will a month’s delay do to me, given the aggressive nature of my cancer? A guardian angel appears I believe that in times of great need, guardian angels make their appearance. A month after I was diagnosed, pregnant and afraid, I joined a Facebook group for pregnant women with cancer. There I found Maddie. She was just a few steps ahead of me on the journey. She too, had been diagnosed with breast cancer while pregnant. I hadn’t started chemo yet. I was terrified for myself and my baby. Maddie, a stranger, took me by the hand. She had gone through the same treatment, and her daughter had been born happy and healthy. It was just the story I needed to hear. I was finally able to get some sleep. But Maddie’s support didn’t end there. She asked for my address, and the next thing I knew, a huge box with supplies to help me prepare for my treatment arrived at my door. Then, during the first few days of chemotherapy, Maddie was there for me yet again, sending me an Uber Eats gift card so I wouldn’t have to worry about food or cooking. We began talking almost daily united by our shared experience. In one of those conversations, I told her I planned to name my daughter Aubri Hope. Soon after another gift arrived. This time it was a personalized pacifier holder with my baby’s name engraved on it and some onesies for the new little one. In turn, I gifted her a necklace inscribed with a pause symbol, a message to both of us that our anxiety does not define us — and our worries do not hold our worth. I thought it would keep us connected. Fortunately, my baby was born healthy and unaffected by her early delivery. Sadly, Maddie, my guardian angel, passed away just a week before I gave birth. I still marvel that even though she was ill herself, in and out of hospital, she managed to take the time to bring me -- a stranger -- comfort and reassurance. While still recovering in hospital from my C-section, I took a walk down the hallway to visit my new baby. Entering into the NICU, I looked at the board where the team’s names were displayed, searching for the name of the nurse assigned to Aubri Hope. Her name was Maddie. About the author Amanda Thomas is the proud mom of two, and a Practice Administrator for Johns Hopkins Medicine. She recently completed her radiation therapy and is happy to report she is showing no evidence of disease. It has become her life’s mission to pay forward all of the love and support she received during the most challenging time in her life (in loving memory of Maddie). https://bizups.info/news/923/Massage can be a terrific complementary therapy for those going through breast cancer, helping to alleviate stress, combat fatigue and even ease pain. I have a standing date with my massage therapist and found regular massage to be incredibly helpful when going through my breast cancer diagnosis and treatment. All that said, please always check with your medical team first, especially if you are going through chemotherapy. Chemo can impact your red and white blood counts and massage -- in particular, intense deep tissue massage can cause bruising and can tax system for those undergoing and weakened by treatment. Massage for stress release Those first few weeks after a diagnosis are so incredibly stressful. I suffered from panic attacks for the first time in my life. During this time of anxiety, I turned to gentle and relaxing Swedish massage to soothe my nervous system. Massage helps to increase the secretion of endorphins, dopamine, and serotonin, which reduces the levels of stress hormones, such as cortisol, epinephrine, and norepinephrine. This can in turn, reduce the effects of anxiety, fatigue, stress, and physical and mental strain. Swedish massage, which uses gentle strokes, has been proven effective in reducing muscle pain and stress, and has been proven safe. In addition, it is very efficient at increasing respiratory function, reducing edema caused by the obstruction of the lymphatic vessels, and helping to improve the damaged soft tissues of the body. The experience of a gentle massage can also be a balm for the soul, allowing you to either rest your mind as well as your body, a brief respite from emotional pain and trauma, or if you are chatty like me, talk through the emotions and experiences with your therapist. This is backed by clinical evidence. A 2005 study examining the impacts of regular Swedish massage on 58 women diagnosed with early-stage breast cancer found that those undergoing therapy experienced a significant reduction in pain and anger. Massage for peripheral neuropathy prevention This one is trickier, but I’m personally convinced that the incorporation of gentle massage before each of my chemotherapy infusions helped to prevent the onset of chemotherapy-induced neuropathy. Peripheral neuropathy is a common side effect for those of us who receive Taxene-based chemotherapy (most do). It can cause tingling in the hands and feet and in more extreme cases, numbness and loss of feeling in the extremities and the side effects can linger for years, or remain permanent. I was worried about peripheral neuropathy, both as a writer whose hands are racing across the keyboard daily and as someone who incorporates fitness, including strength work, into her everyday routine. As part of my research into my diagnosis, I discovered science-based research pointing to the successful use of massage to prevent the onset of peripheral neuropathy. With my doctor’s permission, I arranged for a gentle massage a few days before the date of my infusion. I also wore ice mitts and booties in the chemo suite during the administration of the Taxene drug and remained active during my entire treatment walking, doing pilates, and weights on good days. I know that the experience I share here is purely anecdotal, but I can happily report that I didn’t experience even the mildest tingle and remained completely free of this side effect, and for that, I’m incredibly grateful. Lymphatic massage Removal of lymph nodes is a standard practice of care for those undergoing breast cancer surgery. If imaging shows no evidence of lymph node involvement, typically the surgeon removes a few lymph nodes, called sentinel nodes to be analyzed by pathology for metastasis. For those with more extensive lymph node involvement, the surgeon will perform a more extensive clearance of the lymph nodes. Removal of any lymph nodes raises the risk of the development of lymphedema, a condition that can occur at any time -- even months or years after surgery. Here too, exercise is beneficial, helping to improve lymphatic drainage. So too is maintaining a good diet and body weight. Lymphatic drainage massage, which involves the gentle manipulation of specific areas of your body to help lymph move to an area with working lymph vessels, can help alleviate any swelling that might occur as a result of lymphedema and can help to control and manage the condition. Once again, please consult with your medical team before undertaking any form of treatment and always work with a trained massage therapist well versed in this form of treatment. Deep tissue massage I had a double mastectomy and opted for aesthetic flat closure with no breast mound reconstruction. As such, I have scars on both sides that arc from my sternum out and into my armpits. I also had radiation on the left side to prevent cancer recurrence. When one has scars as large and as extensive of mine, scar tissue forms. Radiation further tightens and stiffens impacted tissue areas. Shortly after radiation, I experienced some shortening of my range of motion on the left side, so visited an occupational therapist to do some manipulation and to get on a stretching regime that would help to regain my full range of motion and maintain it over time. In my regular Swedish full body massages, my therapist has no issues massaging my chest to keep the scar tissue moving and limber so we prevent adhesions from forming (note: I always give them a heads up not to be surprised when I turn over and there’s nothing there chest-wise). Recently I had a 45-minute deep tissue massage where the therapist upped the intensity, deeply massaging the scar tissue and stretching my arm to further extend my range of motion. Relaxing would not be the term I’d use to describe a massage that was at times uncomfortable. That said, it is vital that scar tissue remains supple and so it is something we’ll continue to work together to maintain. https://bizups.info/news/922/A guest post by Emily Voreas My name is Emily. I have batted infertility, pregnancy loss and breast cancer. This is my story. I love to sing at the top of my lungs alongside my 2-year-old daughter. I play the guitar and she bangs on her tambourine, and then we throw our instruments down and dance around the living room until we fall in a heap laughing until we can’t breathe. I love to swim until my arms turn to jello and my lungs burn with chlorine fumes. I love to hike and bike and run and have so much fun. But I also have a dark side. I battle anxiety and thoughts of my impending death. I spiral down dark corridors and find myself curled up on the floor, tears pouring down my face after I put my daughter down. My dark side is new. I’m not a fan. But I suppose it comes alongside a fight for your life. You can’t build resilience and strength without also casting a dark shadow. A BRCA2 mutation put me at risk for breast cancer When I was 18, my mom and I did blood work and discovered we both had the BRCA2 mutation. My grandma had breast cancer in her 50’s, and my mom had breast cancer in her 40’s. So it didn’t come as much of a surprise to learn of our genetic dilemma. I was judicious about annual MRI’s, mammograms and breast exams to guard against breast cancer. But when it came time to start a family, my doctor recommended we consider IVF. She pointed out how nice it would be to screen out BRCA2 and the risk of breast cancer for future generations. We were lucky enough to make such an expensive choice, so we dove in. I was young and overly optimistic. The minute we implanted our first embryo, I told everyone we were having a girl. The embryo was genetically tested, and I was young and healthy so it should work, right? I planned out her bedroom in my mind, figured out her birthday and what my maternity leave would entail, and even started googling daycares. The heartbreak of infertility and pregnancy loss Joke’s on me. Miscarriage. And then another. And then it was the heart of COVID and my heart was ripped open. And my IVF doctor suggested we save our last embryo for a rainy day and try it the old-fashioned way. “BRCA is an adult-onset disease, I’m sure we’ll have a fix for it by the time your kid has to worry about it.” And it worked… and this time it stuck! But DAMN, I’d never been so sick in my entire life. It’s called Hyperemesis Gravidarum (HG). I’d vomit 1-8 times a day for months on end. I was teaching online at the time and I’d keep a vomit bowl by my computer, turn off my camera, vomit, and then keep teaching. I’d never experienced anything so debilitating in my life! But I’m an upbeat warrior. And it was worth it. Because we were having a BOY! Except… It was the holidays, and our boy’s genetic testing was held up in the lab… and then the doctors called with sorrow in their voices. A chromosomal microdeletion. Such a teensy tiny hiccup with such life altering results. It’s called a termination for medical reasons (TFMR). He was 19 weeks. Our friends held us up through the hardest moment of our lives. They threw a What the F*** party for us and we lit sparklers on the beach, drank mimosas and screamed and sobbed into the wind. I was good when I was around friends, but when they left, I’d curl up on the couch and sink into a deep dark depression. So I tried my best to fake it and stay busy as much as possible. And we weren’t out of the fire just yet, because I had another TFMR and a couple more miscarriages ahead of me. But we made it—lucky pregnancy #7. I again battled HG. I vomited on my bike, in the closet of my classroom, in the shower, in a friend's car, on the slopes while skiing… oh you get the point. BUT we did it! And our sweet rainbow girl was perfect and healthy and happy and strong. Brave and joyful, social and creative. And we were wrapped up in a bliss I couldn’t imagine was possible. Diagnosed at 33 with breast cancer But you know what they say about happy endings… because at 4 months postpartum, at 33 years old, I found a lump. Docs claimed it was clogged milk ducts. But at 10 months I could no longer ignore the softball size boulder sitting on my right chest. It was stage 3B, breast cancer. Then it was GO time. I did a speedy second round of IVF, followed by 25 weeks of chemo. Doctors advised me to keep it easy, and be gentle on myself. So, I (in typical Emily fashion) decided to ignore all of their advice. I worked part time as a 2nd grade reading intervention teacher and wore brightly colored wigs each day. I explained that my hair changed colors if I ate different foods. So one day I “ate a salad” and had a green wig. Another day, pasta with butter, thus a blond wig. And one day, I even ate cotton candy and had a hot pink wig. The kids lost their minds! But inevitably, each day, my scalp would get hot and I’d shuck off the wig and walk around bald. And every single day the kids would jump on me and scream, “I knew it! I knew it was a wig!” And yet, the next day, they would be just as gullible… And while I was fatigued by my breast cancer treatments and working and parenting a young child, I also felt it incredibly important that I feel strong and like myself. So I started small, short walks. But the more I moved, the stronger I felt, and so I upped my game and started swimming, kayaking, hiking and biking.* I’ve always been an athlete. I’m used to hopping in a freezing cold pool when my body is aching and I’m exhausted. So I treated chemo like a really intense workout. If I could just get myself to move I’d immediately start feeling better. And it worked! In fact, I ended up feeling so strong that I celebrated the end of chemo by organizing a Chemathlon (triathlon) with all my friends around the Bay Area, CA. One week after finishing chemo, I swam 1 mile, biked 24 miles, and ran a 5K, surrounded by the love of friends, family, and the beauty of nature. *I don’t want to sugarcoat this time period and the realities of a breast cancer diagnosis. It was also absolute hell. I ended up hospitalized for 2 week long stays due to neutropenic fever. The first time I was ever away from my daughter overnight. But I have the memory of a goldfish and like to focus on the things that bring me joy… A decision to remain flat Next up was surgery. I pushed back against doctors’ advice and chose to have aesthetic flat closure while undergoing a preventive oophorectomy at the same time. Docs strongly suggested I reconstruct, and take my ovaries/fallopian tubes out at a separate date.. One doctor even asked, “is your husband okay with you going flat?” But I was ready to move on with my life with as few surgeries as humanly possible. I held my ground. December 21, 2023. A few days before Christmas. I went under the knife and got chopped up like a roast turkey. Flat as a board. Permanent menopause like my grandma. And self-conscious AF about losing my “femininity”. But there were perks. For instance, I announced to my radiation doctors that I found hospital dressing gowns to be triggering and would, therefore, be topless forever more. Also, now that I was having approximately 10 million lava pit melting hot flashes a day, I started stripping my top off whenever I pleased. In fact, my friends concluded it wasn’t really a party unless Emily took off her shirt. But the real icing on the cake was halfway through radiation. My husband and I went on a bike ride across the Golden Gate Bridge. When we reached the top of a peak, I insisted he take a topless photo of me hoisting my bike overhead. “But, Emily, there are people around….”. I glared at him. “I don’t care! I don’t have boobs. Let them look!” He quickly palmed his face and sheepishly apologized for falling back into old norms. “You're right! Let’s do it!” You know, I've gone through a fair amount of shit in just a few years. And I have had to come to terms with the darkness and fear. But I'm also quite proud of my energy, positivity, and general bad-assness. I’m loving my life braless and appreciating each day I’m on earth. About the author Emily Voreas is patiently growing out her chemo curls while awaiting her 2nd Cancerversary next March, 2025. She is now 34 years old and lives in San Francisco, CA with her husband and daughter. Emily is wrapping up her memoir and is excited to get it out into the world. When she’s not writing, Emily spends her time as a teacher, adventurer and living room-based musician. But above all else, she adores playing momma. https://bizups.info/news/921/Guest post by Natalie Kwadrans It’s one thing to be a mom and a parent. To do these jobs while dealing with metastatic breast cancer, and as a single parent is one harsh dose of hard. I was over the moon when I became a mom 10 years ago, and again 8 years ago. I had – what seemed to be – the million-dollar family. A husband, two lovable rugrats, and two rambunctious Jack Russell pups. My days were filled with daycare and school dropoffs, playdates, extra- curricular activities, housework, yard work, homework, and all the scheduling and budgeting. My husband and I had good jobs and travelled several weeks a year. The perfect life that’s usually what we see posted on social media. Then there is “real life.” That moment where the kid’s laughter turns into a tantrum, the dogs start barking right after a kid falls asleep for a (much needed!) nap, one, or worse when both kids get sick in the middle of the night. That’s when the parent stays home from work to care for the little one. The work deadlines pile up, the furnace dies in the dead of winter. You know, all the “adult” stuff that is part of being a parent. It was exhausting, but was exactly what I signed up for. I wouldn’t have change it for the world. After finding a breast lump, our world changed Then one day, I found a lump in my breast. Initial screening and a biopsy confirmed it was breast cancer. After the initial consultation my husband and I had with the doctor, we left hopeful that surgery, and chemotherapy would do the trick. Unfortunately, it wasn’t that easy for us. After additional scans, it was discovered my breast cancer had distantly metastasized. I was diagnosed with Stage 4 breast cancer, which is incurable. I was told at that time, I could expect to live between two and three years. My kids were only 2.5 and 5 years old at the time of my diagnosis. And just like that, my life, and my family's life changed. It became so very much harder. My temporary leave of absence from work became a permanent thing. I found myself juggling weekly appointments, treatment side- effects, and battling exhaustion beyond anything I could ever imagine – and believe me, I understood exhaustion -- I am a diagnosed narcoleptic. I was no longer able to pick the kids up from daycare or school. I had to step back from attending my kids’ activities. I couldn’t take them to their play dates. Eventually I became so sick that for three months, I was barely able to leave my bedroom without help. I was virtually housebound. Because of my condition, my husband essentially became a single parent with a wife dying of metastatic breast cancer (MBC). To cope, he leaned on friends and did activities with them and their kids. Eventually, the tension we were feeling became a fight. It’s something that all married people do. However, it was during this fight I learned from him that our relationship was over. Dealing with my MBC diagnosis was too much for him. He said he needed to take care of himself. So he left with the kids to stay with his family for six weeks -- saying it would give me time to recover. From cancer diagnosis to divorce Cancer wasn’t part of the life I signed up for. However, I didn’t get a choice in the matter. Becoming a single mom diagnosed with incurable cancer wasn’t the life I signed up for either. However, once again, I didn’t have a chance in the matter. I just had to deal with it the best I could. Slowly, I became stronger. I began doing more on my own. My kids returned home after their six weeks away with their dad. And from that point on, we started forging a new life for ourselves. I’m thrilled to say that I have exceeded the two to three-year life expectancy timeline I was given. I’ve now been living with MBC for five and a half years and managing as a single mom for almost four and a half years. I won’t lie. It’s been very, very hard. Even harder was watching my young kids trying to understand and learn how to live in two homes, with two very different family s circumstances. My parenting schedule revolves around my treatment days, which typically fall on Mondays and occasionally Tuesdays. So based on that, I get the kids on Wednesdays and Thursdays, when I feel better. My ex and I then alternate weekends. I have ongoing palliative treatments every three weeks, which means I can’t work. I am on a disability income and our finances are strained to say the least. Travelling is difficult because I can’t save up enough for a vacation on a disability income. The child support I receive from my ex covers exactly that: food, clothes and other essentials for the kids. New perspectives and new traditions Initially, I thought I was failing my children. I was worried because I couldn’t give them what other kids had. I was hard on myself. Sometimes I still am. That said, I needed to find a way to work and live within my means. Material “things” have become so much less important than they were before by diagnosis and divorce. Instead, we focus on making memories. We have created new family traditions. For example, my kiddos paint a rock every Christmas, and write their name and the year they painted it. We now have a growing “Christmas rock” collection that goes under our tree. Every night, when we snuggle on my bed together before their final tuck in, we share the best things in each of our days. I now have a boyfriend who is incredibly supportive and understanding. If he’s visiting me or our friends and family are staying with us, we invite them onto my bed to join in our daily tradition. After watching a movie together, we now get up and dance to the music during the credits, as we hope that movie has “credit cookies.” There are still days I come down hard on myself. I find myself comparing my situation to other single moms, or comparing what other kids have that mine don’t have. When that happens, my incredibly wise boyfriend reminds me about times I managed to put huge smiles on my kids faces. It’s exactly what I need to hear in that moment. I didn’t sign up to be a single mom with metastatic breast cancer. I did sign up to be the best mom I could be to my kids, regardless of the circumstances. And that’s what I do, every single day. Natalie Kwadrans has been an advocate for cancer patients since she was diagnosed with de novo, triple-positive breast cancer in 2019. She is a patient advocate with Dense Breasts Canada, a patient partner with the Canadian Society of Breast Imaging and a Terry Fox Ambassador and a Patient Representative for Marathon of Hope Cancer Centre’s Network (MOHCCN). Natalie completed a BSc, though she altered course to compete as a snowboard racer for Team Canada. She then pursued graduate-level studies in business and, over her two-decade-long career, broke down cross-organizational silos to implement customer-centric strategies. She was a sessional Bachelor of Business (BBA) instructor at three universities and holds Project Management Professional, Certified Public Accountant and Certified Management Accountant designations. Halfway through her MSc from HEC Paris she was diagnosed with cancer. Her ongoing palliative treatments forced Natalie to quit her career and studies. https://bizups.info/news/920/As of September 10, 2024, the US Food and Drug Administration (FDA) requires that all mammogram reports sent to patients must include breast density, which should be described as either “not dense” or “dense.” If your breast tissue is not dense, the report will say, “Breast tissue can be either dense or not dense. Broader commitment to prevent, detect and treat breast cancer “Today’s action represents the agency’s broader commitment to support innovation to prevent, detect and treat cancer,” said Hilary Marston, M.D., M.P.H., FDA’s Chief Medical Officer. “Since 1992, the FDA has worked to ensure patients have access to quality mammography. The impact of the Mammography Quality Standards Act on public health has been significant, including a steep decrease in the number of facilities that do not meet quality standards. This means that more women have access to consistent, quality mammography. We remain committed to advancing efforts to improve the health of women and strengthen the fight against breast cancer.” The FDA amendments, which are required to be implemented within 18 months, enhance the FDA’s oversight of mammography facilities, including in the key areas of enforcement and patient communication. While nearly all certified mammography facilities continue to meet quality standards, today’s updates, among other things, enhance the FDA’s ability to communicate directly, if needed, with patients and their health care providers in cases where a facility did not meet quality standards and is not adequately communicating with patients about its deficiencies. This is intended to help ensure important information that could affect decisions about patient care, such as the potential need for further evaluation or a repeat mammogram, is communicated as completely as possible. The announcement this month, and the news that women in the US will now be advised of their breast density comes as good news for organizations such as Dense Breasts-Info and Dense Breasts Canada who have battled over the last 10 years with governments in their respective countries to inform women of this critical piece of information. As I have written about on this blog, approximately 50% of the female population over the age of 40 have dense breasts. Dense breasts, which have very little fat, make it more difficult for a mammogram to detect breast cancer, as dense breast tissue presents as white (as does cancer) on imaging. Women with category C and D breasts should receive supplemental screening through an ultrasound. This, in my opinion, is where the new regulations fall short. It is welcome news that women will now be informed of their breast density, but do women know what to do with this information? Will they act on it? Do family doctors have clear clinical guidelines that require them to immediately order an ultrasound for their patients with category C and D density? Dense breasts put you at higher risk The communication to patients receiving a mammogram will say this: If NOT DENSE: “Breast tissue can be either dense or not dense. Dense tissue makes it harder to find breast cancer on a mammogram and also raises the risk of developing breast cancer. Your breast tissue is not dense. Talk to your healthcare provider about breast density, risks for breast cancer, and your individual situation.” If DENSE: “Breast tissue can be either dense or not dense. Dense tissue makes it harder to find breast cancer on a mammogram and also raises the risk of developing breast cancer. Your breast tissue is dense. In some people with dense tissue, other imaging tests in addition to a mammogram may help find cancers. Talk to your healthcare provider about breast density, risks for breast cancer, and your situation.” This puts the onus on the woman to first, to read this report, which many do not fully. Second, they need to understand the implications of breast density. This explanation does an ok job of that. Third, there is a reference to other imaging, but nothing specific. Finally, it is suggested that women speak to their healthcare provider, which again assumes that they will take that step, and that the physician is open and receptive to that conversation. Better education about breast density sooner Not only that, but women need better education earlier about their breast density. It’s a message that simply is not sinking in. Is it because women don't care? Is it because information isn't being provided early enough? Is it that family doctors aren't raising it as a topic for discussion? Or is it that women just don't believe breast cancer will ever happen to them. I recently spoke to an audience of 30 women and asked them point blank if they knew about breast density. Few were able to say they did. Most didn’t know what it meant. Even fellow breast cancer survivors in the room confessed they did not know of its implications for their health, and said they would be following up with their doctors to learn more. So, I am both encouraged and discouraged by this month's FDA’s announcement. Like most areas of women’s health, it is a step forward, but a baby step at best. https://bizups.info/news/919/Rising incidence in women in their 20s and 30s, according to research. To mark Breast Cancer Awareness Month in October, I am delighted to point you to this amazing photo essay by Dense Breasts Canada and award-winning photographer Hilary Gauld. NOT TOO YOUNG portrays the stories of 10 young women told they were too young for breast cancer. NOT TOO YOUNG examines the issue and occurrence of breast cancer in women who are believed to be “too young” for the disease and “too young” to be screened. Each of the ten women portrayed had to fight for attention from their doctors, fight for diagnostic testing, and it turns out, were fighting for their lives - although told they were “too young” to have breast cancer. Diagnosed between ages 24 and 39, the women represent a diverse range of ethnicities and stages of the disease. They have been dealing with the impacts of breast cancer on their physical wellness, mental health, family relationships, and intimacy. They have undergone multiple surgeries, been thrust into premature menopause, had to reconsider their plans for children and family, and are learning to cope with long-term side effects of brain fog, neuropathy, and lymphedema. “Not Too Young to have to freeze my eggs and face menopause. Never in my life did I imagine that at just 24 years old, I would be concerned about my fertility and whether I would be able to have children." — Robin, age 27 | Diagnosed at 24 According to recent research by the University of Ottawa, breast cancer rates are rising in Canada among women in their 20s, 30s, and 40s. Breast cancer has risen by 56% in women between age 20 and 29 since 2001. Young women often are diagnosed at a more advanced stage of breast cancer because they tend to have a more aggressive form of the disease and because they are not routinely screened. I have written about this research here on the blog and shared my thoughts on why we should be very alarmed by this information. NOT TOO YOUNG is a stark reminder for women under age 40, and of all ages, to prioritize their breast health. “The women portrayed in this powerful photo essay have bravely stepped forward to share their stories. These are young women in the prime of their lives. They feel compelled to set off alarm bells with their peers and the medical community,” says Jennie Dale, Executive Director of Dense Breasts Canada. “We encourage all women - including younger women - to be breast aware. Learn how to examine your breasts and do it every month. You are not too young. Breast cancer doesn’t discriminate by age. Know your body. Be proactive. And remember that you are your own best advocate.” “Women my age are not routinely sent for mammograms, even when issues arise. I was told it was just a cyst… it wasn't. My mission, going forward, is to invite all women to stand together, to raise awareness and to encourage early detection and prevention. Conduct self-exams, request imaging, find a voice and keep seeking answers, especially if you're told, as I was, that it was unusual for a woman my age. Speak up and you may save a life - possibly your own.” — Tarot, age 33 | Diagnosed at 29 NOT TOO YOUNG urges all young women to take charge of their breast health and to understand that they are not immune to this disease. Stories and images can be seen here. ABOUT DENSE BREASTS CANADA Dense Breasts Canada (DBC) is a non-profit organization, founded in 2016. DBC is made up of dedicated individuals and healthcare professionals committed to raising awareness and advocating for optimal breast cancer screening for all Canadians. ABOUT HILARY GAULD Hilary Gauld is an award winning Canadian commercial and family photographer residing in Hamilton, ON. Hilary believes strongly in the power of a photograph and it's ability to invite people into deeper conversations. She dedicates her time and talent each year to helping raise awareness in both the breast cancer space and the Down syndrome community. densebreastscanada.ca mybreastscreening.ca