By Alexis Puthussery Rural Americans make up about 15% of the population, and according to the US census, rural healthcare disparities continue to increase for this population every year. In terms of cancer, the CDC states that cancer deaths for metropolitan communities decrease by about 1.6% every year, while for rural communities, the decrease is only 1%. While in terms of percentage, this difference may not seem significant, the difference accumulates every year and continues to worsen the current situation for rural citizens. Rural and urban areas share three common types of cancer: breast, colorectal, and lung. Urban areas experience higher incident rates of breast cancer, while rural areas experience higher rates of colorectal and lung cancers. However, in all these cancers, rural areas experience higher overall mortality. For breast cancer in particular, the importance of regular mammograms and screenings are vital to detecting cancer early and facing better odds and survival rates. A study conducted in midwestern America in 2020 found that Americans in rural areas experience lower rates of breast cancer screening and higher rates of late-stage breast cancer diagnoses than their more urban counterparts. The disparity between rural and urban Americans is not only found in cancer in general, but specifically in breast cancer as well. The Rural Screening Gap Much of the disparity is known, so how do we start to tackle the problem and work towards improving it? An ideal first step for rural communities would be to focus on breast cancer screening disparities. A greater emphasis on rural healthcare funding, such as testing and primary care centers in these locations should be put on state government agendas. Additionally, studies have found that healthcare professionals are less likely to move to rural areas, so special incentives or benefits could be put in place for healthcare providers who decide to move to rural America. The lack of physicians in rural areas affects much more than the screening aspect of breast cancer. When diagnosed, having to travel hours for treatment is a significant impediment and contributes to the many barriers to healthcare within rural areas. Joy Anderson , a healthcare worker from Fossil, Oregon, stated that people in her town have to travel 70 miles to see the nearest physician. The effect this has on chemotherapy and/or radiation treatments, which have to be administered weekly, if not daily, is not hard to imagine. Programs like the California Oregon Medical Partnership to Address Disparities in Rural Education (COMPADRE) focus on placing doctors in rural areas and unrepresented areas should be supported, promoted, and funded. Another factor many rural patients experience is “breast cancer neglect.” Jennifer Lycette, M.D. has conducted research on this experience within rural areas and has found that these populations are more likely to delay, put off, or simply refuse breast cancer screenings. In one article, she describes her experience with a woman who had been neglecting a massive tumor for what Dr. Lycette believed for months or years. This woman also had bipolar disorder and was unable to receive mental health treatment. This contributed to her breast cancer neglect and eventually led to her death at 50 years old. Dr. Lycette’s work and findings show the multiple, confounding factors that contribute to rural breast cancer health disparities. Neglect of mental health and lack of mental health resources, lack of healthcare education and access, and a general distrust of physicians stemming from a lack of access saturate Dr. Lycette’s research, but also reveal possible avenues to improve the rural health disparities. How Can Breast Cancer Screening Awareness Improve in Rural Areas? Studies have found that mental health prevalence is the same in both urban and rural areas, but accessibility, affordability, availability, and acceptability all pose barriers for rural areas, causing many people to go untreated. With primary care doctors and oncologists, centralizing more mental health professionals in rural areas would greatly improve the treatment of cancer. Promotion of mental healthcare in rural communities would not only help patients cope better with breast cancer once they are diagnosed, but help their loved ones cope and function as better caregivers as well. At the root of many stories like Dr. Lycette’s is a distrust of the healthcare system. Groups who have been systematically mistreated in the past by American healthcare, such as rural Americans, low-income Americans, and black Americans have grown weary of the field as a whole and not without reason. This was made extremely apparent during the pandemic and vaccine rollout. Trust needs to be rebuilt between the healthcare system and these groups. This can be done with effective outreach programs and on-the-ground healthcare intervention where rural citizens receive the same level of attention and care as those in urban areas. Additionally, to get to the root of the problem, medical and healthcare students should be taught about these disparities during their schooling, so that they are more responsible as providers to these populations. Finally, the best way to help rural communities struggling with healthcare disparities is to just ask them what they need. Matthew Gavidia for an article in the American Journal of Managed Care pointed out that the best people who know what a town or city needs are the inhabitants of said city or town. Therefore, personalized programs should be implemented, where immediate, specific needs of communities are the top priority. A More Accessible Screening Future There is more that can be and must be done in terms of fighting for more government funding for rural medical centers and promoting mental health within their communities and more rural physicians. While important, these are things that will take months or even years to see substantial effects. For those who need immediate solutions, the answer for what to do when diagnosed with breast cancer is not so simple. One helpful resource is the CDC’s National Comprehensive Cancer Control Program (NCCCP). The NCCCP provides cancer plans for every state on their website at They provide prevention measures and aid in treatment, all of which can be found on their website. Another resource for those in rural areas is the Rural Cancer Control portion of the National Cancer Institute’s website found here . This provides rural patients with possible treatment centers in their area. Rural citizens face healthcare disparities on all fronts, and so when treating a disease as devastating as cancer, it is vital to improve access to healthcare, information, and education. Online resources are the best option for many rural citizens, but what will truly help is systematic change. Continuing to vote for and promote programs and laws at the state level that will benefit breast cancer patients is how everyone can contribute to closing the enormous disparity rural citizens face.

Dear Kristen, I’m planning to beat this disease, but I am aware of my mortality like never before. Do you have any ideas for things I could leave for my children and grandchildren that tell them about me and how much I love them? * * * Dear Reader, I relate to both your plans to live a long life and your desire to leave a legacy for the ones you love. Because I’m living with metastatic breast cancer, I’ve done a few things along these lines and I am happy to share them, plus give you (and others) some ideas I’ve read about. I’ll start with the easiest and work my way up to more complex projects. Letters Keep it simple and write a letter with your best pieces of advice, favorite quotes, top values, wishes for their future, and a whole lotta love. It could be designed for them to read anytime, or on their 18th birthday, graduation day, wedding day – your choice. Use your own handwriting! It’s so personal. No one will care whether it’s messy, they’ll just love seeing your personality come through on the page. Guided Memory Books You may have seen these at bookstores everywhere; here’s a link to one called “Tell Me Your Story, Mom,” on Amazon that has hundreds of great reviews. I’ve seen nice ones at Barnes & Noble and our local independent bookstore as well. These are nice because they guide your thoughts and give you inspiration. My son gave me a book a few years ago called “300 writing prompts” and I’m about halfway through it. It’s longer than most guided journals, but I’m giving it my best shot! “Mom Cards” Here’s something I made for my kids, who are 26 and 23 this year. I bought a blank card deck, also available from amazon, and wrote one piece of advice on each card. I made these over the course of a year or so, adding thoughts as they came to me or when I read something and thought it would make a great addition. I kept my ideas in a document on my computer and then made the cards one afternoon. Here’s a link to my document if you’d like to borrow any thoughts. Photo Albums / Scrapbooks At the more complex end of the spectrum are photo albums combined with handwritten memories. Last year, I finally made baby albums for my son and daughter; they had been on my to-do list for 20 years so it felt really good to get them done. You could also make “you albums,” which I did when they were children. I gathered photos that spoke to who they were as individuals, like being silly, creative, loving, and curious. You might make a “day in the life of” family album, showing the normal, simple, – or crazy – life you lead together. Stuffed Animals If you want to have something special made that will be loved for years to come, I really love these Memory Bears that can be made from a piece of clothing or fabric. Not only are they highly customizable, but they're a sweet way to repurpose an article of clothing, resulting in a beautiful and meaningful legacy item. * * * Whatever you make, it will be cherished, even if your children receive it when you fall off your bike at age 95 and decide it’s time to pass it along. xo Kristen Additional Resources: Breast Cancer Conversations Podcast episode 123: Creative Projects for Leaving a Legacy Metastatic Breast Cancer Meet-up With Thursday Night Thrivers

By Alexis Puthussery What is a caregiver? The American Cancer Society defines caregiver as “the person who most often helps the patient and is not paid to do so.” Like the patient, caregivers undergo stress and anxiety, although they may not always show it. It is thus important to pay attention to the mental health and well-being of caregivers as they truly are the unsung heroes. One must recognize that a cancer diagnosis takes a toll on the person diagnosed and all of those around them. Parents, siblings, friends, and other loved ones quickly fall into the caregiver role and are thrown into the intensity of a cancer diagnosis. Caregivers, more than anyone, assume some of this burden because of the love they have for the patient. Taking care of oneself as a caregiver should always be a priority, especially when you have decided to give so much of yourself to someone else. It is also important to emphasize that valuing a caregiver’s experience does not devalue or decenter the patient’s experience. This is an issue that may prevent many caregivers from seeking help when they need it. When one decides to become a caregiver (or sometimes by default become the caregiver) they willingly accept the mental and physical stress that comes with it. Studies have shown that caregivers experience significantly higher levels of anxiety and depression. This can lead to symptoms such as: Difficulty sleeping Higher irritability Becoming easily fatigued Other issues that may affect the caregiver’s daily life, and also the quality of care they can give to their loved one with cancer Additionally, studies have found that caregivers may suffer PTSD after a loved one has been diagnosed with cancer. Thus paying extra attention to oneself, as a caregiver, is important to maintaining mental and physical wellness. a strong support system is recommended for the caregiver as well, though it does not necessarily need to take on the traditional forms such as support groups or therapy. 5 Ideas to Maintain Mental Health & Well-Being as a Caregiver Carve out time for yourself each day, even if it is just 15 minutes, find time for YOU. While caregiving brings on new roles and responsibilities, do not cut yourself off from the activities you enjoy doing. If you are part of a sports league, church group, or a local society, keep participating as you will find that this brings a level of normality in a time when taking control of cancer seems impossible. Get exercise! Exercise is a great stress reliever. Try and find 30 minutes a day for a walk with a friend, pick up a tennis racket, or throw some weights around. Keeping physically active will help you fight off fatigue and help you sleep better! Develop a “code word.” It is natural that cancer is stress-reducing and even though you and the person diagnosed have the best intentions, it’s normal for emotions to run high. If you notice that communication is starting to break down, use your “code word” as a single that you need to take a time-out and break. This strategy will immediately defuse the situation and give you and your loved one an opportunity to reset. You are going to be busy, there is no doubt about that. But preparedness is key. Find a good friend or colleague and ask them to call you once or twice a week to check in on you. Have that person set a reminder in their phone so they don’t forget! When they call, this is a time to talk about YOU, not updates on how your loved one is doing or when the next doctor’s appointment is. This is your opportunity to take your mind off of cancer and just chat! When reflecting on their time as caregivers, many wished they had asked for help from their friends and families sooner rather than later “Help” can take on many forms and is unique to the individual. For example: Ask a neighbor if they wouldn’t mind coming over to help with daily chores like doing the dishes, cleaning the house, or doing the laundry. Ask friends to help with picking up or dropping off the kids from school and after-school activities. It seems like everyone these days brings food over or orders food online. If people are offering to help with meals, be sure you inform them of your food preferences and any allergies in advance! Taking care of oneself as the caregiver is not only important during the initial trauma of learning a loved one has been diagnosed, but also for the months and years to come. It is common for stress and anxiety to bubble up during times leading up to doctor visits, scans and medical appointments. Just as caregivers want to be there for the person with cancer, those close to the caregivers want to do the same for them. In order to face cancer, a strong community is necessary, and this extends to the community of caregivers as well. If you are caring for a loved one with cancer, what type of resources would be most helpful for you? Let us know so we can fill the gap in this important area of programming and services at SurvivingBreastCancer.org . Email info@survivingbreastcancer.org with your ideas!

A breast cancer diagnosis can send you into a tailspin. The official pronouncement can stir emotions whether you’re newly diagnosed , face a reoccurrence, or experiencing progression. A breast cancer diagnosis can leave some people feeling shocked, numb, and asking themselves, “How could this happen to me? I was doing everything ‘right.’” Others may feel frightened in a stressful time of uncertainty, while some kick it into high gear and fierce planning mode, trying to control what is in their power. Hopefully, knowing that your emotional reactions are natural can be reassuring. The reality is that breast cancer and its treatment can be unpleasant and frightening, so, understandably, you experience a range of emotions. In addition, you may feel uncertain about the future and worry about balancing work, finances, family, etc.— all of which can contribute to building stress and be traumatic. Each person reacts to breast cancer differently, and it is possible to feel many different emotions simultaneously. There’s no right or wrong way to respond to a life-changing diagnosis, just as there’s no single way to deal with the feelings that come about due to a diagnosis. Everyone is unique, and you have permission to deal with your emotions in the best way that works for you. Although there’s no easy solution, it may be reassuring to understand the emotional impact and seek support as you navigate this challenging time. Emotional Stages of a Breast Cancer Diagnosis The feelings generated by a breast cancer diagnosis are sometimes compared to the five stages of grief identified by psychiatrist Elisabeth Kübler-Ross in 1969—denial, anger, bargaining, sadness and depression, and acceptance. In many ways, it is much like mourning your pre-diagnosis life. However, while the framework included in this model is familiar to many people, it isn’t necessarily how everyone will process their diagnosis. Although the stages of grief are sometimes numbered sequentially, people don’t necessarily experience them in that order or for a specific time. You may feel all or some of these emotions or other emotions not referenced here. 1. Denial When faced with overwhelming news, people sometimes go into denial. The shock can make you feel numb or stunned, leading to an initial feeling of disbelief. Denial is a subconscious natural coping mechanism that protects us from becoming too overwhelmed. It allows us to process the news in more manageable pieces. 2. Anger Receiving a breast cancer diagnosis can trigger anger in some people. For example, you may feel angry because you feel out of control, feel life as you know it is changing, or if your family and friends don’t react to the news the way you expect. 3. Bargaining Although nothing could prepare you for getting a breast cancer diagnosis, many people respond by thinking, “what if.” If only you had found the tumor earlier or somehow prevented your cancer. Your mind focuses on those scenarios in an attempt to gain control. Unfortunately, bargaining can sometimes lead to blaming yourself for your cancer, but being diagnosed with breast cancer is not your fault. 4. Sadness and Depression It’s completely natural that learning you have breast cancer would cause you to feel sad or have symptoms of depression. Depression can manifest in several ways, including a lack of motivation and interest, sleeping issues, or a lack of appetite. 5. Acceptance Coming to terms with your new reality can be challenging but can lead to hope and feeling empowered. However, it doesn’t necessarily mean that you won’t continue to struggle with other feelings such as fear, anger, or sadness. Acceptance may help you make decisions about your future and experience inner strength. Navigating and Managing Your Emotions When diagnosed with breast cancer, you have to sort through the overwhelming volumes of information to make informed decisions about your treatment plan. Dealing with the roller coaster of emotions and the unknown can significantly increase your stress level and interfere with your ability to make informed decisions about your health. However, managing the emotional stages of your diagnosis is essential because it will put you in a better position to understand your treatment options and handle the treatment demands. It’s essential to alert your healthcare team about the emotions you’re experiencing so they can connect you with resources to help support you. Anger and depression, for example, can have severe consequences if left untreated. “Everyone has an opinion but what it is that I should do. However, at the end of the day, the choice was mine. They were my decisions and decisions I had to live with. For me, this gave me peace and control. As long as I could wake up every day and honestly look at myself in the mirror knowing that I made the best decision for ME, then I was content. This mindset also allowed me to alleviate a lot of the stress around me too!” –Laura Carfang Surviving Breast Cancer also offers multiple resources about financial support, including financial management guides, podcasts, and webinars to provide you with information and lessen your anxiety. In addition, our global online community offers opportunities to connect with others for safe, judgment-free, peer-to-peer support to ensure that you’re never alone. We also offer healing workshops and mindful movement classes , and you can join any of our groups or get matched with a mentor . Count On Us A breast cancer diagnosis can upend your life. It may sometimes feel like your head is spinning between dealing with your emotions, searching for information, finding the right doctor, and taking care of yourself. But, we are here for you from day one, with resources, a caring online community, and anything else to give you strength and hope. Whether you make a cash donation , host a fundraiser , or volunteer , your support enables us to make those resources available to as many people as possible.

Dear Kristen, My teenage daughter doesn’t want to hear anything about my cancer; it upsets her and she prefers to pretend I’m fine. She actually gets angry when it comes up or if I mention being tired, my hair falling out, etc. It’s strange not to talk about something that’s so big in my life, and I’m tired of pretending there’s nothing wrong just to appease her. Also, it would feel good to get even a little bit of sympathy or empathy from her. Any suggestions? Dear Reader, It sounds to me like both you and your daughter have emotional needs that might be met if you can have some loving but difficult conversations. The root of anger is fear, so, probably, underneath your daughter’s behavior lies her fear of losing you. And you probably have a desire to be seen and loved and supported through these difficult times. Your needs and hers are so natural. I wrote a book about how to navigate challenging topics with people you care about and will offer some suggestions on how you and your daughter might do this. This process can work really well if both people can “stick to the script,” which is designed to keep emotions in check while allowing you to say how you truly feel. The acronym for the six-step process is ISPEAQ (like “I speak”). I’ve attached a fill-in-the-blank template so you can plan out what you want to say beforehand. By thinking it through before you talk, you’ll improve your chances of a positive outcome. I is for Intentions and “I” language First things first; you want to know exactly what your intention is for the conversation. Make it positive, like having more open and empathetic communication with your daughter. When you get to the point of talking, stay away from using the word “you” as much as possible because it can put the other person on the defensive. S is for Suitable Setting Choose a calm time and place to talk, ideally somewhere you won’t be interrupted by cell phones, people, or other distractions. P is for Positive Preface The first thing you want to say is something positive that will resonate with the other person and show them that your intentions are good and loving; that you see the good in them. You might say to your daughter, for instance, “I admire the way you seem able to handle my illness without getting overwhelmed.” If that doesn’t feel 100% genuine, find something that does. She’ll know if you’re faking it. E is for Explicit Example Next, refer to a specific incident that upset you. Avoid the tendency to generalize, which can easily deteriorate into her saying,” that is not what happened,” and pitting you two against each other. A specific example might be, “When you got up and left the table when I was talking about the treatment I had today;” if she did that, she can’t argue about the facts. A is for Adversely Affected Next, say how the explicit example made you feel. So, “When you got up and left the table when I was talking about the treatment I had today, I felt sad and ignored and unheard.” (Note this is all done in “I” language. No one can argue that your feelings are not valid — they are.) Q is for what you reQuire going forward and whether the other person has Questions This is where you say what change you’d like to see and then invites the other person into the conversation. Ideally, they will also have worked through the ISPEAQ template and be prepared to calmly tell you what they saw happen, how it made them feel, and what they need going forward. ~ ~ ~ Yes, this might feel a bit scripted, but that can help us keep our difficult conversations on track instead of being derailed with emotional tangents and becoming heated in the moment. ISPEAQ is based on deep theory in non-violent communications and mediation techniques and has worked wonders with many people in families and in professional settings. It truly does give you a better chance to get close to the people you care about, even when a difficult subject matter arises. Kristen xo Additional Resources

By Kelley King Hello, my name is Kelley, and I am a 65-year-old MALE breast cancer survivor. Less than two years ago, I was diagnosed with stage 2 breast cancer. The discovery was completely unexpected . I had no symptoms and felt great. My diagnosis came through a groundbreaking DNA blood test called the Galleri test (offered to me through a wellness program with my life insurance company). Although not yet FDA-approved, the test flagged something my doctors would have otherwise missed. I truly believe it saved my life. My treatment journey included 18 weeks of chemotherapy, surgery , and 25 rounds of radiation at the Stephanie Spielman Comprehensive Breast Cancer Center. Like many in breast cancer treatment, I faced challenges along the way: stomach issues during chemo, low blood counts that required hospital stays, and significant weight loss (though most of it has returned). My biggest lingering issue is neuropathy in my feet. I’ve also struggled with medications, like tamoxifen. It felt like someone was taking over my brain and my body. I know that’s a risk, but I’m trying to balance quality of life with ongoing care . Being a man with breast cancer  has made this journey unique at times. More than once, a nurse in the lobby asked if I was waiting for my wife thinking she was the “Kelley.” I often had to explain that I was the patient . But in most ways, my experience is not so different from many others—the shock of diagnosis, the battles of treatment, and the determination to move forward. I don’t know exactly where this road will take me, but I’m deeply grateful to be here—to share, to learn, and to walk alongside all of you. Thank you for letting me be part of this community. Read More: Men: Know Your Breast Cancer Risk 10 Myths & Facts About Male Breast Cancer Male Breast Reconstruction: Fixed or Flat? Resources for Male Breast Cancer Patients Genderless Breast Cancer Research The Stigma Surrounding Male Breast Cancer On the Podcast: Breast Cancer Conversations God Had Other Plans For Me | With 3x Male Breast Cancer Survivor, Vance Stacks Share your story, poetry, or art: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

Lymphedema , or the buildup of lymph fluid within your lymphatic system, is a potential side effect of cancer treatments. It often occurs in the arms, chest, or back, and those undergoing breast cancer treatments are often at a higher risk because of lymph node biopsy/dissection or breast, chest, or underarm radiation affecting the lymphatic system. (Listen Now) Lymphedema may present with cumbersome side effects, including swelling, pain, and heaviness in the affected area. Because of this, it is important to find a treatment plan that works to minimize your symptoms. Healthcare providers advise lymphatic drainage massages and compression sleeves, devices, or bandages as non-surgical treatments and can refer patients to physical therapists who are specifically trained in these techniques. Additionally, there are a few surgical treatments that may be worth considering if your lymphedema is significantly affecting your daily activities. There are 5 main surgical techniques that healthcare providers may use to reduce or eliminate lymphedema: 1. Liposuction Liposuction traditionally removes excess fat tissue from the body. However, in some patients, the excess lymph fluid can stimulate inflammation in the affected body part, leading to abnormal fat buildup, which then needs to be removed. Depending on the location of your lymphedema, liposuction can be an outpatient procedure, but usually requires about a week of recovery time. You will then be followed for an additional six months to ensure post-operative success, and are advised to wear compression garments during your recovery. This surgery is ideal for people who have not responded well to any other kind of treatment. For those suffering with late-stage, non-pitting lymphedema (lymphedema where, if you press on the area, no indent is left), liposuction can result in a near-complete reduction of swelling. However, if you have a type of lymphedema known as “pitting edema”, where there is still lymph fluid in the affected area (if you press on the area, an indent is left), this type of intervention is not recommended as it removes fat, not lymph fluid. Additionally, liposuction is not recommended for those actively undergoing cancer treatments or for those with metastatic cancers. 2. Lymphaticovenous Anastomosis/ Lymphovenous Bypass LVA or LVB uses microsurgical techniques to reroute your lymphatic system around the blocked area and connect your lymphatic system directly to your blood circulation. Your surgeon will identify the affected lymphatic channels using infrared dyes and an infrared camera. They will then identify the best vein to connect your lymphatic vessels to in order to restore proper flow to the area, and connect the two via an anastomosis , or vessel attachment surgery. LVA/LVB is a minimally invasive, outpatient procedure, and most people are discharged the same day they have their surgery. Typically, your surgeon will recommend that you do not use compression garments for about a month after the surgery, to allow the attached vessels to heal properly. Many patients experience a noticeable improvement in their symptoms, but this surgery does not cure the main lymphatic blockage; instead bypasses it. As a result, it may take up to a year for some patients to have results, while there may be no change in symptoms for a small number of people. If you want to learn more about this procedure, Mayo Clinic has produced an informational video that explains the details of the procedure with a visual explanation. 3. Vascularized Lymph Node Transfer Surgery/ Lymphovenous Transplant VLNT is a more invasive surgery, where your surgeon takes a group of lymph nodes from a part of your body not experiencing lymphedema, and transplants them to the area with lymphedema, rewiring the lymphatic system in that area to reestablish lymphatic flow. The extent of surgery and recovery time, as well as the outcomes/potential complications of the surgery, depend on where the source lymph nodes are harvested from. Your surgeon may choose to take lymph nodes from one of a few sites , including the groin, supraclavicular flap, the submental lymph node flap, the thoracic flap, and the jejunal mesenteric node. Healthcare providers need to be cautious about the area they take from, as removing lymph nodes from one area of the body can occasionally result in new lymphedema at that site. While there are pros and cons to each donor site, your surgeon will work with you to pick the best site for you. Since the procedure is more involved, VLNT recovery is typically done for a few days in the hospital, then a week or two at home. You’ll likely have to manage drainage tubes as well as be careful about moving or using the affected area until you’ve recovered. While VLNT is more of a treatment for lymphedema than LVA/LBA is, there are still some people who do not respond to treatment. However, most people typically see results between six weeks to two years post-procedure. 4. Laparoscopic Omental Lymph Node Transfer An omental transfer, sometimes known as VOLT, combines aspects of both the LVA/LBA and the VLNT to treat lymphedema. Surgeons take a sheet of fat in the abdomen known as the omentum and transplant it into the affected area, improving lymph circulation. The procedure can even be minimally invasive, with some hospitals, such as Mayo Clinic, opting to do the procedure assisted by a surgical robot (although this has not been formally approved by the FDA). Similarly to VLNT, VOLT recovery and outcomes vary from person to person. Some experience symptom reduction right away, while others, unfortunately, do not notice any improvement. The procedure is fairly new, but so far, it seems to work for the majority of patients studied. However, because it is a newer technique, more research needs to be done on determining who would benefit the most from it. 5. Charles Procedure The Charles procedure is the oldest surgical treatment for lymphedema, and it is also the one with the highest rate of complications. Because of this, and the fact that there are newer, better surgical interventions, it’s rarely performed. However, in some cases , the Charles procedure can help improve severe cases of lymphedema. The surgery is done by first cutting out the affected tissue, then using parts of the removed skin to act as a graft and seal the wound created. It is invasive and requires extensive recovery (about a month in the hospital) and monitoring to make sure the graft heals properly . The Charles procedure should only be considered if your lymphedema is severe enough that you are unable to use your limb or the affected area of your body normally. When done successfully, most patients are able to use their limb or affected body area for their everyday activities with no trouble. More Information While these are the main surgical interventions you would consider for lymphedema, we highly recommend talking to your healthcare provider about what the best decision is for you. At SurvivingBreastCancer.org, we want to give you the information you need to make an informed decision that is best for your body and your life. If you want to learn more about lymphedema or surgical interventions for lymphedema, check out these additional resources:

Dear Kristen, Having breast cancer is wearing me down in so many ways, not just physically. I used to be so full of life and energy, and now I feel weak and timid. What can you suggest for feeling stronger on the inside? One of my greatest beliefs is that each of us has inner strengths that help define who we are as individuals and that help us get through any situation with more confidence and clarity. When you’re feeling weak and timid, that is the perfect time to reconnect with your strengths and who you are when you are strong and confident. Perhaps you’ve done a strengths inventory at some time in the past. If you haven’t, or if you’d like to get a fresh perspective, I recommend taking the free online VIA Assessment of Character Strengths . It is the most widely used survey of its kind, having been taken by more than 15 million people over the past ten-plus years, and is scientifically validated. I also like it because it is not work-focused, as so many strengths tools are; instead, the VIA Assessment shows who you are across all areas of your life. (You can opt to purchase an extensive report on your strengths, but it is not necessary. For no charge, you will receive a summary of your strengths in ranked order.) What do you do once you know what your strengths are? You leverage them to do the things you’re struggling with. For instance, let’s take the strength of kindness. It is the most common strength among people worldwide, but I’ve found that it is most often directed at other people. For a change, try using kindness on yourself , treating yourself gently and with loving compassion. I recently retook the Assessment for the fun of it (for the fifth time in ten years), and my top strength is love. It’s always been near the top of my list, but since my diagnosis, the desire to deepen my relationships and focus on my family and dear friends has grown even stronger. I believe love and the people I care about are the most important aspects of life. Each of the 24 VIA strengths can be applied in this way. Read through the descriptions below and choose the ones that best describe you (or take the online assessment ). Those are your go-to, “signature” strengths and will be easy for you to use, feel essential to who you are as a person, and will energize you when you use them. Strengths of Wisdom Creativity: Thinking of novel and productive ways to think about and do things; includes artistic achievement but is not limited to it. Curiosity: Taking an interest in ongoing experience for its own sake; finding various subjects and topics fascinating; exploring and discovering. Judgment/ Critical Thinking: Thinking things through and examining them from all sides; not jumping to conclusions; being able to change your mind in light of evidence; weighing all evidence fairly. Love of Learning: Enjoying mastering new skills, topics, and bodies of knowledge, on your own or formally; adding systematically to what you know and what interests you. Perspective: Being able to provide wise counsel to others; having ways of looking at the world that make sense to you and others. Strengths of Courage Bravery: Not shrinking from threat, challenge, difficulty, or pain; speaking up for what’s right even if there’s opposition; acting on your convictions even if they’re unpopular; includes physical bravery but is not limited to it. Honesty/ Authenticity: Speaking the truth, but more broadly presenting yourself in a genuine way and acting in a sincere way; being unpretentious; taking responsibility for your feelings and actions. Perseverance: Finishing what you start; sticking with a course of action despite obstacles; taking pleasure in completing things. Zest: Approaching life with excitement and energy; not doing things halfway or half-heartedly; living life as an adventure; feeling alive and activated. Strengths of Humanity Kindness: Doing favors and good deeds for others; helping them; taking care of them. Love: Valuing close relations with others, particularly those in which sharing and caring are reciprocated. Social Intelligence: Being aware of the motives/feelings of others and yourself; knowing what to do to fit into different social situations; knowing what makes other people tick. Strengths of Justice Fairness: Treating all people the same according to notions of fairness and justice; not letting your feelings bias decisions about others; giving everyone a fair chance. Leadership: Encouraging a group you belong to to get things done while maintaining good relations within the group; organizing group activities and seeing that they happen. Teamwork: Working well as a member of a team or group; being loyal to the group; doing your share. Strengths of Temperance Forgiveness: Forgiving those who have done wrong; accepting others’ shortcomings; giving people a second chance; not being vengeful. Humility: Letting your accomplishments speak for themselves; not regarding yourself as more special than you are. Prudence: Being careful about your choices; not taking undue risks; not saying or doing things that might later be regretted. Self-regulation: Regulating what you feel and do; being disciplined; controlling your appetites and emotions. Strengths of Transcendence Appreciation of Beauty and Excellence: Noticing and appreciating beauty, excellence, and/or skilled performance in various domains of life, from nature to art to sports to science to everyday experience. Gratitude: Being aware of and thankful for the good things that happen; taking time to express thanks. Hope: Expecting the best in the future and working to achieve it; believing that a good future is something that can be brought about. Humor: Liking to laugh and tease; bringing smiles to other people; seeing the light side; making (not necessarily telling) jokes. Spirituality: Having coherent beliefs about the higher purpose and meaning of the universe; knowing where you fit within the larger scheme of things; having beliefs about the meaning of life that shape your conduct and provide comfort. Kristen xo

By Rod Ritchie Entering the world of breast cancer treatment can be a unique challenge for a guy. Be prepared to get around the scanning department in a pink gown! The emphasis on the color pink, used extensively in all breast cancer charity promotional materials, means that men are blindsided from coming up with a probable breast cancer diagnosis of a lump behind their nipple. 'Dr. Google' is the first port of call for most men I know after a breast cancer diagnosis. Of course, everyone says, "Don’t Google," but when there’s a dearth of information, what else can you do? This was particularly so eight years ago when I was diagnosed. In recent years, pink charities have improved awareness of breast cancer in men, but studies have shown the awareness rate in the community is still below 50%. Ideally, breast cancer charities would do more to educate people in raising awareness by stressing the simple fact that this is a genderless disease. Sometimes we are an inconvenient truth, and much of the marketing targets a population being asked to dig deep and donate for a women’s disease. I get this angle but so often I see young female breast cancer patients as the lead image when this cohort is a minority of those newly diagnosed. Women are generally diagnosed in their mid-50s, while men in their mid-60s. Because men don’t generally check themselves for breast lump, and because their general practitioners are not attuned to looking out for the disease in men, we can easily slip below the radar. Treatment for men is pretty much the same as that for women. And, until more research is carried out on male patients that might indicate a different path is required, this will likely remain the case. So, chemotherapy, surgery, radiation and then a five- or ten-year course of a hormone blocker, most commonly tamoxifen, is common treatment protocol. Prognosis For many newly diagnosed advanced breast cancer patients, the first thing they want to know once they are over the shock of the diagnosis is, what is my prognosis? Many use an online prognosis tool, using information about the diagnosis compared to data from large research studies to estimate prognosis. Mind you, this research does not always include men. Five and ten-year survival rates, often presented in the form of graphs, can give life expectancy estimates. Those who develop Stage IV breast cancer are particularly concerned about their prognosis, obviously. Setting end-points in someone’s life really is a guessing game. Bear in mind that so much depends on how a patient responds to the various treatments and, importantly, the new life-extending treatments that are in the pipeline. If you know a guy worried about a diagnosis or treatment, you might direct them to these resources: Signs of breast cancer in men. Statistics for men with breast cancer. Surgery is on the cards for all men with this disease. Sex and intimacy following treatment is an important consideration. Metastasis is the spread of cancer from where it began, to other places in the body. From the blank looks at medical receptionist counters, as in, where’s the patient, to looking for support groups on social media where like-minded men who have been there, done that with all aspects of the disease. But, really, I have met so many supportive women who are only too happy to not only help explain scientific data, and also offer emotional support when the going gets tough. --- Rod Ritchie is a Sydney-born writer, internet publisher, and breast cancer patient activist, living with breast and prostate cancers. Currently he’s NED for both. He’s president of the Board of Directors of the Male Breast Cancer Global Alliance, has a website at MaleBC.org and you can follow him on Twitter @malefitness His articles for Health Union can be found here: https://advancedbreastcancer.net/author/traveltext

Receiving a breast cancer diagnosis and dealing with the subsequent treatments and issues is challenging. The news can ignite many emotions, whether you’re newly diagnosed , facing a recurrence, or experiencing progression. Unfortunately, for some people, the cancer journey also includes heartache and partner abandonment from someone they thought they could count on, no matter what. It can be emotional or physical when a partner abandons a person with cancer. Emotional partner abandonment occurs when the non-cancerous person in a relationship withdraws their emotional support and affection. Physical partner abandonment happens when they leave the house for extended periods, stop paying bills, and cease to engage in other household-related activities. Women Are At Greater Risk for Partner Abandonment Sadly, partner abandonment after a cancer diagnosis isn’t unique, and it’s more likely to happen to women. Research from the University of Michigan found that 31% of marriages that involve physical illnesses end in divorce . In addition, the study found that more men than women develop serious health problems over time, but more men leave their sick wives. This means women are doubly vulnerable to marital dissolution connected to illnesses: they are more likely to become widowed and more likely to be abandoned if they get ill. Another study from the Fred Hutchinson Cancer Research Center found that significantly more husbands leave their wives compared to wives leaving husbands after a serious illness, such as a cancer or heart failure diagnosis. The overall rate of marital dissolution among cancer patients is about 12%. In addition, the divorce rate when a woman is the cancer patient is 20.8%, while the rate when a man has cancer is just 2.9%. Why People Abandon Loved Ones After a Cancer Diagnosis Sometimes people abandon their loved ones after a cancer diagnosis because they fear what will happen. They may be scared that their loved one will die or that cancer will cause them to suffer horribly. Others may simply be afraid of the unknown — what the future holds for them and their partner, and how it might change their lives forever. Some people also abandon their loved ones because they don't want to experience pain. Cancer can make people feel helpless and frustrated, especially if it prevents them from doing things they used to enjoy: going out with friends or family members, taking care of household chores, or even being intimate with someone they love. How To Tell If Your Partner Will Abandon You After a Cancer Diagnosis There’s no way to know if your partner will abandon you after you’ve been diagnosed with cancer — or at any part of the cancer journey. However, if you’re worried that your partner will leave you after a cancer diagnosis, you can do a few things to find out. It might seem like an obvious question, but ask them! Tell them that you are feeling anxious and scared about what having cancer means for your relationship, and ask them how they feel about it. While it may be understandable if they’re reluctant to talk about it or make plans for the future with you as a couple, it might be an indication that something is wrong. Another way to tell is if they start putting their own needs in front of yours — such as going out with friends more often than usual or spending money on themselves rather than saving up for important things like car repairs. You should also watch closely if your partner becomes withdrawn from the relationship: Does he always seem sad? Does he withdraw from affectionate gestures? These signs may mean he's starting to pull away emotionally, even though he hasn't said anything directly. It Might Not Be Abandonment If Your Partner Needs Space Before you give up on your partner, consider that they might be going through some of their feelings about what is happening. It can be difficult for anyone to see their loved one go through cancer. Your partner may feel overwhelmed and need some space to work through things in their own way. Your partner may also feel a lot of pressure to act differently than they usually would to help make things better for you. To do so, they may need time and space away from you to figure out how best to support your needs during treatment. Another reason a partner might pull away could be because changes ahead will impact the relationship dynamic between both parties (i.e., once treatment ends). This could leave them uncertain and afraid of what those changes might mean for their future with you now or later down the road (if at all). Abandonment Happens, But It Doesn't Mean You're Unlovable It’s normal to feel abandoned in the face of a cancer diagnosis. Unfortunately, the general public’s understanding of cancer remains woefully inadequate, leaving loved ones feeling powerless and afraid. Even those who have had personal experience with a loved one’s illness may be unprepared for how it can affect their relationship with their partner. Cancer is an emotionally intense journey that can stress even the happiest relationships; when coupled with abandonment issues and other intimacy challenges, it can be hard to hang on as things get more complex. Although being abandoned by your partner can leave you feeling alone, remember that you’re not alone! You are part of an enormous community of people who have faced similar challenges and survived them (or are still surviving them) together. For example, Surviving Breast Cancer’s global online community offers opportunities to connect with others for safe, judgment-free, peer-to-peer support to ensure you’re never alone. We’re Always Here For You! Surviving Breast Cancer is always available with multiple resources , including financial management guides, podcasts, and webinars, to provide you with information and lessen your anxiety. We also offer healing workshops and mindful movement classes , and you can join any of our groups or be matched with a mentor . Whether you make a cash donation , host a fundraiser , or volunteer , your support enables us to make those resources available to give strength and hope to as many people as possible.

Have you ever felt preemptively depressed or anxious about something that hasn’t yet happened? Specifically, regarding breast cancer, this may happen if you are awaiting news of a diagnosis, outcomes of a surgery or treatment, or any further development in your cancer. It can also bubble up as we discussed regarding putting down a pet , or if you know that a loved one’s prognosis is not good, and you want to make the most of the time you have left. If so, you’re not alone and are likely experiencing what can be called anticipatory grief . This phenomenon, while best studied in anticipated loss of life from any cause, can precede any major result or development from breast cancer that is assumed to be detrimental. Specifically, this often occurs within the contexts of receiving a breast cancer diagnosis, anticipating the loss of your breasts, or receiving the news of a metastatic prognosis. Understanding Anticipatory Grief In times of uncertainty regarding your or your loved one’s health, it is easy to assume the worst before it has been confirmed. For many, anticipatory grief is a coping strategy that may help soften the blow of an unfavorable outcome, and it can help those struggling to find closure when/if their outcome is realized. With a disease as nuanced and individualized as breast cancer, the way you may cope with it is equally as complex and personal. Common experiences include emotional stress, preoccupation with the uncertain outcome or diagnosis, loneliness or social withdrawal, irritability, anger, or physical changes such as increased or loss of appetite, or even pain/body aches. The key point to understand is that while it may seem counterintuitive to be sad about something that hasn't yet been confirmed or hasn't happened yet, especially to an outside party, it is completely normal to experience anticipatory grief. It is also more common than you might think; even those experiencing other kinds of losses, such as when your child is moving out for college or you’re moving cities for a new job, can experience grief over these impending changes. It’s something we need to bring to light and talk more about to normalize these feelings and emotions. Coping with Anticipatory Grief While it is hard to say definitively what may or may not help in coping with anticipatory grief, as it is an intrinsically personal experience, there are some strategies that may work for you. First and foremost, it is important to let yourself feel any grief as you experience it. Grief has four general purposes, including accepting the loss, processing your feelings towards it, adjusting to a “new normal”, and connecting you to those around you in a different way in light of the change. By allowing yourself to work through these issues beforehand, it shortens the time you need to process should you receive less than favorable news in the future. Other coping methods include regular exercise, activities like art , reading , or dance , journaling, and attending a support group or seeking help from a trained mental health professional. No matter how your breast cancer journey progresses, know that it is okay to grieve at any stage, as a cancer diagnosis is a major life change that you may need time to process fully. If you’ve experienced anticipatory grief and are willing to share your story, we’d love to hear about it! You can see additional breast cancer stories from our readers here . For those looking for additional support, download the SurvivingBreastCancer.org app , where we have community discussion boards and private groups so that you can connect with others in a similar situation and get peer-to-peer support. On the Podcast: Breast Cancer Conversations: Anticipatory Grief: How Do You Speak To Your Children About Cancer?

By Rod Ritchie I’ve written a lot about the stigma many men experience when they are given a breast cancer diagnosis. This truly is a big thing, and it very often kicks in, even before diagnosis, when a guy is wondering about a lump behind his nipple or even a nipple discharge. Perhaps a partner or a woman friend might offer advice like, better get that checked out, but many men are still getting over the shock that they could even get this disease and embarrassment when they find themselves entering a world of pink. I edit men’s breast cancer stories for the Male Breast Cancer Global Alliance and of the approximately 2,600 men diagnosed each year in the United States, only a dozen or so come forward to tell their story. Again, there’s not enough public awareness that breast cancer is genderless. Of course, it’s very obvious that women are better at not only talking to each other about their ailments, but also seeking medical attention when they are genuinely concerned. And, they have the benefit of public awareness, extensive research on the disease based on the results of trials on hundreds of thousands of women. The good news is that the FDA recently asked research institutions to consider including men when they submitted research proposals. Without the benefit of evidence-based research, men will continue to be treated using the research results of women. I have to say that I didn’t succumb to much stigma. I’m not sure if it’s because my mother was treated for metastatic breast cancer. I’ve often thought if she had been diagnosed just 10 years later, she would have benefitted from chemotherapy drugs that were just being introduced at the time. As it was, she had a radical mastectomy and very strong, but not well directed, radiation treatment. I was 10 at the time when I caught sight of mom getting out of the shower. Her chest was extensively scarred and this image is still clear in my mind today. She died two years later, aged 40. For too long now men have been blindsided by this cancer. I’ve made a point of being an active advocate for men with breast cancer through my writing, my patient counseling, my active social media presence, and sometimes through direct action. At a large breast cancer fun run in a capital city a few years ago, I asked for a turn at the microphone. The M.C., looking somewhat askance, passed it to me and I said, this disease is genderless, men, if you feel a lump, get it checked out, or if you have a family history of breast or prostate cancer, join a screening program. The microphone was pulled away from me after this. I’d broken the code of silence surrounding men and this disease. Well, I didn’t care. Unless we all make a noise, we’ll never change anything. Most important to all the patient advocates I know working on explaining the genderless nature of breast cancer, is to eliminate sexual stereotyping . This can be achieved by lobbying the big pink charities to include us in their education and awareness campaigns, advocating for more research that includes men of all races, and making a genuine effort to reduce the stigma attached to being a man with this disease. --- Rod Ritchie is a Sydney-born writer, internet publisher, and breast cancer patient activist, living with breast and prostate cancers. Currently he’s NED for both. He’s President, Board of Directors, Male Breast Cancer Global Alliance, has a website at MaleBC.org and you can follow him on Twitter @malefitness His articles for Health Union can be found here: https://advancedbreastcancer.net/author/traveltext

By Alexis Puthussery The presence of social media in modern life can’t be denied. Be it TikTok, Instagram, Facebook, or one of the many other available platforms out there, most people today have some form of social media. Whether its influence has been overall good or bad has been the subject of many debates. The reality is much more complicated than a single net positive or negative, with much of its influence depending on the individual user and their tastes and mindset. This is even truer in the context of breast cancer social media engagement. A Useful Tool Research has shown that social media is a useful tool for those diagnosed with breast cancer. A study published in 2019 in the Journal of Medical Internet Research wrote about the positive effects social media can have for patients. Developing connections with others is extremely important for people, no matter the state of their health, and it’s especially important for those who have been diagnosed with breast cancer. The study acknowledged that in-person interaction is the ideal way to maintain these connections, but this may not be possible for some. They write how some patients may not have many supportive people in their communities to turn to, so social media can give them the support they have been looking for. There are extensive online communities that offer advice, education, and morale for patients, many of which can be found on SurvivingBreastCancer.org Social Media and Quarantine The value of social media is highlighted well in the study from the Journal of Medical Internet Research, which was written in 2019, pre-pandemic. During COVID-19, however, the value of social media for breast cancer patients can’t be overstated. In quarantine, not only were breast cancer patients stuck in their homes and separated from many loved ones like everyone else in the world, but they were also one of the more susceptible populations to the virus. The study from the Journal of Medical Internet Research noted that cancer patients feel significant mental pressures on top of their physical ones. These pressures were amplified during the pandemic. This combination of being more susceptible to the virus and being separated from the community during quarantine made social media an important tool for breast cancer patients to keep their psyche healthy. Spread of Misinformation Though social media has certainly been beneficial for patients when seeking out communities, the spread of health misinformation on popular social media sites like TikTok and X has increased in the past few years . A study conducted in 2021 by Victor Suarez-Lledo and Javier Alvarez-Galvez found that noncommunicable diseases, such as cancer, were one of the six health topics about which misinformation was spread most often on social media. The prevalence of health misinformation increased during the pandemic regarding masking and vaccine protocols. Since then, the reliance on social media for medical information has only grown. In July 2022, Google revealed that about half of today’s youth (18-24 year olds) use TikTok or Instagram instead of Google Search. More and more people are starting to trust what they see on social media, even though studies, like the one by Suarez-Lledo and Alvarez-Galvez, have shown that misinformation is rampant on these sites. To avoid misinformation regarding breast cancer, after reading something on a social media site, double-check with a medical professional in your life or visit trusted cancer sites such as Survivingbreastcancer.org, American Cancer Society, or Cancer.gov. Ethics, Exploitation, and Permission Another potential pitfall of breast cancer on social media is the ethics of posting about someone with breast cancer. Many people post about a loved one who has cancer, often in good faith and to spread awareness. If someone plans on doing this, they must get the permission of the patient to prevent exploitation. Especially if the planned post intends to share details about the patient’s battle, no matter how significant, the patient must sign off on the post. Too often, breast cancer patients are exploited, and social media provides another avenue for this exploitation. It gets trickier if the patient has passed away. This is when the questions of what and whether or not someone should post about a patient’s illness become more case-by-case. Someone can still be exploited after they have passed away, and one should go to the greatest lengths possible to prevent this from happening. If the diagnosis is terminal, ask the patient what they are comfortable with you sharing and where. Permission is always necessary when posting about your loved ones. Do What Feels Good For You The effects of social media on the breast cancer community cannot be defined as completely good or bad. It is something that is dependent on the person and their involvement in a patient’s life and is completely up to them. During the pandemic, social media certainly was helpful for many, but the following rise in misinformation online highlights its pitfalls. Use social media in regard to your cancer journey as you see fit. If you feel that a specific community is lacking in your life regarding education or support for your breast cancer, there are plenty of groups that you will be able to find on social media. Survivingbreastcancer.org has many resources that can be found on the website. But if you feel like you have everything you need in your life in person, don’t feel pressured to go to social media just because it is everywhere.

A breast cancer diagnosis is overwhelming and can leave your head spinning. If you’re dealing with breast cancer, especially if you’ve recently been diagnosed, it's easy to get confused by all of the terms your healthcare team uses. However, it’s essential that you understand these terms so that you can play an informed, active role in your care. While most people are familiar with many basic terms, like mammograms and imaging, you’ll likely hear other references to treatments and tests that are not as recognizable. Keep reading to learn more about terms used involving the diagnosis and treatment of breast cancer and new groundbreaking data. Oncotype Scores vs. MammaPrint vs. BluePrint Several tests are available to determine a treatment plan and the likelihood of recurrence. They differ based on age and other factors, including cancer stage. Oncotype Score If you’ve been diagnosed with breast cancer, your doctor may recommend the Oncotype DX test. Depending on your cancer type, this test can tell doctors if the cancer is likely to return at some point. The Oncotype DX analyzes a cancer tumor sample to see the activity of specific genes and how likely it is to grow and spread. The test uses tissue taken during the initial biopsy or surgery. It measures 21 select breast cancer genes. (You might hear it called a "21-gene signature.") Your doctor might suggest the test if you have: Stage I or II invasive breast cancer Estrogen-receptor positive (called ER+) cancer, meaning the disease's cells grow in response to the hormone estrogen Cancer that isn’t in the lymph nodes The test uses a ‘numerical recurrence score’ (1 to 100) that divides tumors into three categories: low, intermediate, or high risk of recurrence. MammaPrint The MammaPrint test is a genomic test that analyzes the activity of specific genes in early-stage breast cancer. Genomic tests analyze a cancer tumor sample to see how active particular genes are, determining how likely it is to grow and spread. These tests help doctors make decisions about whether more treatments after surgery would be beneficial. While their names sound similar, genomic testing and genetic testing are very different. Genetic testing is done using blood, saliva, or other tissue samples and can tell if you have an abnormal change (also called a mutation) in a gene linked to a higher risk of breast cancer. The MammaPrint test can only be used to analyze early-stage breast cancers. For example, the test can be used on cancers that are: Stage I or stage II Invasive Smaller than 5 centimeters In three or fewer lymph nodes Hormone-receptor-positive (estrogen/ progesterone) and hormone-receptor-negative The MammaPrint test can be performed on a sample of preserved tissue that your doctor removed during the original biopsy or surgery. BluePrint BluePrint is a test used to predict tumor behavior in breast cancer. The test analyzes the activity of 80 genes to classify the tumors into three types: Luminal: This type of tumor is responsive to hormonal (Example: anti-estrogen) therapy HER2: This type of tumor multiplies rapidly, may recur, and can be treated with anti-HER2 therapies Basel: This type of tumor grows quickly and does not respond to hormonal or anti-HER2 therapies MammaPrint and BluePrint tests are run simultaneously on the same tumor tissue sample to provide results in ten days. It’s the only FDA-cleared test that is designed for people of all ages who: Are newly diagnosed with invasive early-stage breast cancer (Stage I or II) Have a tumor size up to 5 cm Are either lymph node-negative or have 1-3 positive lymph nodes Genomic Testing and Precision Medicine Genomic tests analyze a cancer tumor sample to determine certain genes’ activity. The genes analyzed are called biomarkers. For breast cancer, the genomic tests are used mainly to analyze early-stage, hormone-receptor-positive (estrogen +/- progesterone), HER2-negative breast cancer to predict the risk of recurrence — cancer coming back — usually within five to ten years following the initial diagnosis. Precision medicine — also called individualized or personalized medicine — is an approach to diagnosis, treatment, and prevention, taking into account a person’s genetic makeup. For example, the goal of precision medicine for breast cancer is to tailor treatment to your genetic makeup and the genetic changes in your cancer cells. Groundbreaking News on Cancer Research The world’s leading oncology researchers gathered at the 2022 American Society of Clinical Oncology (ASCO) meeting. There, they presented leading-edge research and tackled disparities in breast cancer, including the following five highlights: Improved Overall Survival Rates for Advanced Triple-Negative Breast Cancer A recent study showed that the addition of pembrolizumab to chemotherapy significantly improved the overall survival rates among patients with advanced triple-negative breast cancer tumors with a clinical and pathologic stage (CPS) score of 10 or more. Improved Survival in Women With Hormone-Positive, HER2-Negative Advanced Breast Cancer Another study has shown a significant benefit with adding ribociclib to letrozole as the first-line treatment in postmenopausal women with hormone receptor-positive, HER2-negative advanced breast cancer. Strides Are Being Made in the Treatment of Brain Metastases From Breast Cancer Promising study results show that new drugs for HER2-positive breast cancer can overcome some obstacles that have made brain metastases challenging to treat. Chemicals Used in Personal Care Products May Increase Breast Cancer Risk in Black Women Study findings show that chemical compounds called parabens, widely found in hair and personal care products, may increase breast cancer risk in Black women more than in White women. The Risk of Disease Progression Significantly Reduced for Hormone Receptor-Positive and HER2-Negative Advanced Breast Cancer Tests have shown that sacituzumab govitecan-hziy significantly reduced the risk of disease progression for patients with advanced breast cancer that is hormone receptor-positive and HER2-negative. Count On Us for Information, Resources, and Support Whether you’re newly diagnosed with breast cancer , are navigating survivorship, or are the loved one of someone experiencing breast cancer, you can count on Surviving Breast Cancer to keep you informed. We provide educational information to help you better understand symptoms, testing, treatment options , surgery, etc., and podcasts that feature professionals, advocates, and caregivers who share valuable information. Our global online community offers opportunities to connect with others for safe, judgment-free peer-to-peer support and ensures you’re never alone. We also offer healing workshops and mindfulness classes . Join any of our groups or get matched with a mentor. Contact us today to learn more about or benefit from our services.

Why are Surgical Margins Important in Breast Cancer Surgery? If surgery is part of your or a loved one's plan, then you’ll probably be hearing a term called “ surgical margins .” Understanding a surgical margin is one of the many ways your medical team can determine whether or not surgical intervention was successful or not, and whether or not further procedures will be necessary. As a result, the surgical margin can be a source of worry for many facing breast cancer. This article will hopefully be able to clear up a few points on what a margin is, what it can tell you, and what happens after. Understanding Your Pathology Report The National Comprehensive Cancer Network provides the most up-to-date information on breast cancer guidelines. A pathology report is a medical document that contains information about the tissue and cells that were removed during your biopsy or surgery. The report also includes information about the type of breast cancer you have and how aggressive it is. Pathology reports can be confusing, but it’s important to review them with your doctor so that you can better understand your diagnosis and treatment options. If you’ve been diagnosed with breast cancer, your pathology report can provide valuable information about your disease. Pathology reports can help your doctor determine the type of breast cancer you have and how aggressive it is. This information is important in developing a treatment plan that is tailored to your individual needs. Pathology reports can be confusing, but it’s important to review them with your doctor so that you can better understand your diagnosis and treatment options. If you have questions about your pathology report, don’t hesitate to ask your doctor for clarification. What Happens After My Tumor and Breast Tissue are Removed After your breast tissue is removed, it will be sent to a laboratory where a pathologist will examine it under a microscope. The pathologist will look for cancer cells and determine the type of breast cancer you have. The pathology report will also include information about the tumor’s grade, which is a measure of how aggressive the cancer is. The pathology report can provide valuable information about your disease and help your doctor develop a treatment plan that is tailored to your individual needs. If you have questions about your pathology report, don’t hesitate to ask your doctor for clarification. How to Measure a Surgical Margin? A surgical margin is an examination of the removed breast tissue following a surgery, to see where cancerous cells are in relation to the edge of the sample. Following a breast cancer removal surgery, pathologists will examine the distance between the cancer cells and the edge of the removed breast tissue, or the size of the border surrounding a removed tumor. Surgical margins are the tissue that surrounds a tumor that has been removed during surgery. The width of the margins varies depending on the type of cancer being treated. For example, breast cancer margins are typically 1-2 cm, while melanoma margins are usually 5-7 cm. The goal of surgery is to remove the entire tumor along with a margin of healthy tissue to reduce the high risk of recurrence. Margins are also important in determining the stage of cancer, which helps guide decisions. Margins are classified as either microscopically positive or negative. Microscopically positive margins mean that there are cancer cells at the edge of the removed tissue sample, while negative margins mean that there are no cancer cells at the edge of the sample. Knowing Your Surgical Margin Status Understanding your margin is also important in determining the stage of cancer, which helps guide treatments. When your breast tissue is sent to the pathologist, they will perform an analysis to determine if the surgery achieved clear margins. Margins are classified as either microscopically positive or negative. Microscopically positive surgical margins, or involved margins, mean that there are cancer cells at the edges of the tissue that was removed during surgery. This means that not all of the breast cancer cells were removed and that there is a higher risk of the cancer recurring. Negative surgical margins, or clear margins, mean that there are no breast cancer cells at the edges of the removed tissue, which signifies that all of the breast cancer cells were likely removed during surgery. Finally, close margins are when it is unclear if there are cancer cells at the edge of the tissue or not, or the cancer is very close to the edge of the tissue. What Happens If I Have a Positive Margin Result? The term “positive surgical margin” (PSM) is used when cancer cells are found at the edge of the removed tissue sample. This means that all of the cancer may not have been removed during surgery, and additional treatment, such as radiation therapy, may be needed. A PSM can also be a sign that the cancer may come back (recur). The chance of the cancer recurring is higher if the PSM is close to the edge of the removed tissue or if there is more than one area of PSM. If you or a loved one has been diagnosed with breast cancer and received this result, it may feel scary or like the surgery wasn’t successful. However, it’s important to keep in mind that a positive margin doesn’t necessarily mean that the breast cancer will come back or that the surgery wasn’t successful. In fact, many breast cancer patients with positive margins go on to have successful breast cancer treatment and remain cancer-free. What Does PSM Indicate About the Cancer? There are a few reasons why you may have a positive surgical margin even though the surgery was successful in removing the breast cancer tumor. One reason is that breast cancer cells can be very small, so it’s possible for some breast cancer cells to remain even after surgery. Additionally, the surgeon may have removed a larger margin of breast tissue than necessary to ensure all of the breast cancer cells were removed. It’s also important to keep in mind that breast cancer can spread beyond the breast. So, even if the surgeon removes the breast cancer tumor and a wide margin of breast tissue, there’s a possibility that breast cancer cells have already spread to other parts of the body. This is why breast cancer patients with this diagnosis often receive additional treatment, such as radiation therapy, to help kill any remaining breast cancer cells and reduce the risk of the breast cancer recurring. How Can You Lower Your Risk of Having Positive Margins? There are a few things you can do to lower your risk, including: Choose a breast cancer surgeon who is experienced in the type of surgery you are looking to have Have a preoperative breast MRI in addition to a mammogram Discuss your treatment options with your surgeon in advance of the surgery What Treatment Options are Available If You Have a Positive Margin? If you have breast cancer and did not have clear margins, your cancer treatment team will likely recommend additional treatment, such as radiation to help kill any remaining cancer cells and reduce the risk of the breast cancer recurring. Radiation is a common therapy for breast cancer patients. In fact, studies have shown that breast cancer patients who receive radiation treatment after surgery have a lower risk of the breast cancer recurring. If you or a loved one has breast cancer and positive margins, it’s important to talk to your healthcare team about all of your treatment options. Together, you can make a treatment plan that’s best for you. What Happens If I Have a Negative Surgical Margin Status? If you or a loved one has been diagnosed with breast cancer and receives this result, it’s good news! An NSM indicates that the surgery was successful in removing all of the cancer from the breast. Additionally, it means that there’s a lower risk of the cancer recurring. NSM is often used to describe hope. This article helped to clear up some questions you may have had about surgical margins. If you or a loved one has been diagnosed with breast cancer, it’s important to talk to your healthcare team about all of your treatment options. Together, you can make a treatment plan that’s best for you. If you or a loved one has been diagnosed with breast cancer and received negative margins, it means that there were no breast cancer cells at the edges of the removed tissue. This is generally good news, as it suggests that all of the breast cancer cells were likely removed during surgery. In most cases, no additional treatment will be necessary following surgery. Breast cancer patients with negative margins have a lower risk of the cancer recurring. However, it’s important to keep in mind that breast cancer can still come back even if you have negative margins. That’s why it’s important to follow up with your breast cancer treatment team and get regular breast cancer screenings, even if you’ve had breast surgery with negative surgical margins. What Happens If I Have a Close Surgical Margin Status? Close surgical margins, also called close margins or margin-negative breast cancer, refer to cancer tumors that are very close to the edge of the removed tissue but don’t have any breast cancer cells at the edges. Close margins are not considered positive because there are no breast cancer cells at the edge of the tissue. However, close margins may require additional treatment, such as radiation therapy, to help reduce the risk of the cancer recurring. Your team will likely recommend additional treatment. In most cases, this additional treatment will be radiation therapy. When Will I Know the Results? Margin results are usually given a week after surgery, and it also depends on what type of surgery you are getting. If you have negative margins, usually no follow-up surgery is recommended, although you may undergo further chemotherapy and/or radiation. However, for both positive and close margins, this means that further surgery may be required. The Different Types of Breast Cancer and How They Affect Surgical Margins While the reported nationwide rate of PSM for breast cancer is about 20% , according to a couple of reviews of margin outcomes, the actual statistics may be much smaller, closer to 5 or 6% due to the national rate not accounting for repeated procedures on aggressive cases. These statistics also vary between the types or stages of breast cancer, as well as the type of procedure a person chooses to undergo (total mastectomy vs. partial). Possible risk factors include HER2+ cancers, a lobular histology, and more conservative breast-conserving surgery types. However, despite these risk factors, the occurrence of positive margins for breast cancer in both men and women declined over one study period of 10 years. This means that surgeons are improving over time at removing most/all of the cancerous tissue for a given surgery, and the chances that you or a loved one will be faced with a positive margin are lower than they once were. According to guidelines published by the American Society of Breast Surgeons , the recommended course of action for those with negative margins is not to repeat a procedure; for those with close margins, to rely upon genetic markers and the location of close margins in deciding whether or not to repeat a procedure. Despite improving rates, the possibility of having positive margins at all can be a source of great stress and worry for many. Not knowing what surgical margins you’ll have following a potentially major, life-altering surgery can often lead to adverse consequences, such as insomnia, depression, anxiety, and anticipatory grief. Does Your Surgical Choice of Lumpectomy or Mastectomy Improve Your Chances of Clear Margins? Although there are some clear advantages to having a mastectomy over a lumpectomy, such as lower risk of cancer recurrence and no need for radiation therapy, the decision of which surgery to have is often a very personal one. Some people may feel that the disadvantages, such as a longer recovery time, more scarring, and a higher risk of complications, are not worth the slightly increased chance of clear margins. Ultimately, the decision should be made between you and your breast cancer treatment team, taking into account all of the available information on your individual case. It’s important to remember that even if you do have PSM, it doesn’t mean that your breast cancer treatment has failed. In most cases, further surgery or radiation therapy can be successful in achieving clear margins. And although the prospect of more surgery may be daunting, it’s important to remember that you are not alone in this journey. There are many resources available to help you through this difficult time, and with the support of your loved ones, you will get through it. Ways to Improve Your Chances of Getting Clear Margins in Breast Cancer Surgery There are a few ways that you can improve your chances of getting clear margins. First, you can choose to have a mastectomy instead of a breast-conserving surgery. While a mastectomy is more invasive, it also gives the surgeon a clear view of the breast tissue and allows them to remove more tissue. Second, you can choose to have a genetic test before surgery. This test can identify if you have certain genes that are linked to breast cancer. If you do have these genes, your surgeon may be able to remove more tissue to ensure clear margins. Finally, you can ask your surgeon about their experience with breast surgery. Choose a surgeon who has performed the procedure many times and has a good track record. While there is no guarantee that you will get clear margins, following these tips can improve your chances. How to Reduce Stress While Waiting On the Results of Your Surgery Some steps that you can take to mitigate these include reaching out to a support group or mental health professional, or partaking in creative works such as reading , writing , drawing, dance , and journaling. Finally, it is always a good idea to discuss your concerns with your medical team, as they will be able to best address your individual case. Grappling with surgical margins is something that many will have to face throughout their cancer journey, but it’s important to remember that they are not entirely indicative of how your story will go. At SurvivingBreastCancer.org, we want you to know that we are here with you, no matter how your journey may progress. How to Cope with a Diagnosis of a Positive Margin Status after Surgery? If you or a loved one receives a positive margin diagnosis, it’s important to remember that you are not alone. In fact, breast cancer patients with positive surgical margins often go on to have successful breast cancer treatment and remain cancer-free. If you’re struggling to cope with a diagnosis of positive margins, there are a few things you can do: Talk to your treatment team about your diagnosis and treatment options Join a breast cancer support group Talk to a counselor or therapist who specializes in helping people cope with breast cancer It’s important to remember that you are not alone. There are many resources available to help you cope with your diagnosis and treatment. What are the Long-Term Effects of Breast Surgery? The long-term effects of breast surgery will vary depending on the type of surgery you had. For example, if you had a lumpectomy, the long-term effects may be less severe than if you had a mastectomy. Additionally, whether or not you received radiation therapy after surgery can also affect the long-term effects. Some common long-term effects of surgery include: Pain at the site of the incision Lymphedema (swelling in the arm) Numbness in the breast or chest Infection Scarring If you’re experiencing any long-term effects from surgery, it’s important to talk to your doctor. They may be able to prescribe medications or suggest treatments that can help alleviate some of the side effects. Will a PET or CT Scan Be Required? A PET or CT scan may be required if your surgical margins are close or if there is a chance that cancer cells may have spread to other parts of your body. These scans can help your doctor determine whether or not you will need additional treatment. Breast cancer patients with positive surgical margins often go on to have successful breast cancer treatment and remain cancer-free. Talk to your treatment team about your diagnosis and treatment options- Join our SBC breast cancer support group (aka Thursday Night Thrivers ) What Questions Should I Ask My Breast Surgeon? If you are scheduled to have breast surgery, it’s important to ask your surgeon any questions you may have about the procedure. Some common questions patients ask their surgeons include: What type of surgery will I be having? What are the risks and complications associated with this type of surgery? How long will the surgery take? What can I expect the recovery process to be like? Will I need to stay in the hospital after the surgery? When can I expect to see results from the surgery? Asking questions can help ease some of the anxiety and stress you may be feeling about upcoming surgery. It’s also a good opportunity to get more information about what to expect during and after the procedure. What are the Different Types of Breast Cancer Surgery? The type of surgery you have will depend on a number of factors, including the stage of your cancer, the size of your tumor, and your overall health. The three most common types of breast surgery are: Lumpectomy: A lumpectomy is a minimally invasive surgery in which only the entire tumor and a small margin of healthy tissue surrounding it are removed. This type of surgery is typically used for early-stage breast cancers. Mastectomy: A mastectomy is a more extensive surgery in which the entire breast is removed. This type of surgery may be recommended for larger tumors or for patients who are at high risk of the cancer returning. Breast Reconstruction: Breast reconstruction is a surgery that is performed to rebuild the shape of the breast after a mastectomy. This type of surgery is typically done at the same time as a mastectomy or may be done in a separate procedure. Aesthetic Flat Closure What are some common side effects of breast cancer surgery? Some common side effects of breast surgery include: Pain at the site of the incision Swelling and bruising Fatigue Nausea and vomiting Difficulty urinating or having a bowel movement Lymphedema (swelling in the arm) Numbness in the breast or chest Infection Scarring How to Cope With a Breast Cancer Diagnosis? If you’ve been diagnosed with breast cancer, you may be feeling a range of emotions, including shock, fear, sadness, and anger. It’s important to remember that everyone copes with a cancer diagnosis differently. There is no right or wrong way to feel. Some people find it helpful to talk to a counselor or join a support group. Others find comfort in spending time with family and friends. There are also a number of resources available to help you cope with a breast cancer diagnosis, including the following: American Cancer Society: The American Cancer Society offers information and support for people affected by cancer. National Cancer Institute: The National Cancer Institute provides information about cancer treatment, research, and prevention. Breast Cancer Research Foundation: The Breast Cancer Research Foundation funds breast cancer research and provides information about breast cancer. Susan G. Komen: Susan G. Komen is a nonprofit organization that offers support and resources for people affected by breast cancer.

By Rod Ritchie Most cancers are genderless, with the notable exceptions of ovarian, cervical, testicular, and prostate cancers. Why is it, then, that breast cancer is so often thought to be exclusively female, when we all have some amount of breast tissue? With only one percent of new cases in males and other genders, there are often too few of this cohort to enroll in trials, and therefore, we don’t get new drugs tested on us at all. It’s as if we are statistically irrelevant. All this leads to treatment for all other genders based on women's treatment. While this treatment is often very successful, and thankful we should be for the research that created new medications, further research could eliminate a gap in treatment outcomes that was discovered in a recent study. Because awareness among the general population, including clinicians, that breast cancer is specific to women, studies are a start and prove that quality research can inform treatment for the better . A 2018 study of 1482 men by BCRF researcher Dr. Fatima Cardoso, Coordinator, European School of Oncology Breast Cancer Program, shows men are often under-treated with breast cancer . Also, they were much less likely to get breast-conserving surgery after an early-stage diagnosis. They were also less likely to receive endocrine therapy for ER-positive breast cancer, compared to women. Along with her colleagues, Dr. Cardoso has also reported the biological and molecular differences between male and female breast cancers. In recent good news, the FDA has issued a draft guidance document, Male Breast Cancer: Developing Drugs for Treatment. They are now recommending the inclusion of males in breast cancer clinical trials. The final guidance document will help guide companies undertaking clinical development of drugs to treat breast cancer in male patients. This will lead to real change. Advocating For All Stages of Breast Cancer As a Stage III patient advocate working alongside Stage IV advocates for eight years now, I regularly come across the common social media meme: 20-30% of people diagnosed with early-stage breast cancer will be re-diagnosed with MBC. I always think, well, that means a 70-80% chance of no regression. Not bad odds. But, as the years rolled by and I lost male and female friends to the disease, I could see that my odds may have been favorable, but without a cure, and having also been treated for aggressive prostate cancer, my prognosis was not so good. Patient advocates living with early-stage breast cancer are often advised to stay in their lane, rather than take up the cause for metastatic patients. At least that was true until recently, when influential advanced breast cancer patients and groups began to see the issue of advocacy sustainability as a problem moving forward. Sustainability is an awkward term, but here it is applied to describe the attrition of metastatic breast cancer (MBC) patient advocates, who pass because they’ve run out of lines of treatment. The breast cancer advocate community loses fine advocates all the time. As a second-generation breast cancer patient, one who lost my mother, aged 40, I’m particularly keen to support younger MBC women who have kids. But, I’ve come to know many metastatic patients from an active social media and forum presence, from attending training courses and seminars, and annual conferences like the San Antonio Breast Cancer Symposium. It was metastatic patients who were the patient advocacy movers and shakers. Conversely, while many early-stagers tended to be active whilst undergoing initial treatment, they were more often not so afterward. Pretty soon, my breast cancer pals were mostly MBC folks. And what an informed and active lot they were. We all crave hope; it is the corollary of fear, a natural emotion, and one common to patients of all stages. Whether we like it or not, we are all more or less in this together. As a man with breast cancer, I know this well. Early-stage patients like myself don’t just give practical and moral support; we learn about what might well be our future from MBC folks. But, regardless, we will have the experiences and memories, the advocacy methodology, and the inspiration based on personal relationships to guide us. --- Rod Ritchie is a Sydney-born writer, internet publisher, and breast cancer patient activist, living with breast and prostate cancers. Currently, he’s NED for both. He’s the President of the Male Breast Cancer Global Alliance, is on the board of directors, has a website at MaleBC.org , and you can follow him on Twitter @malefitness His articles for Health Union can be found here: https://advancedbreastcancer.net/author/traveltext

While menopause is a widely known and understood phenomenon, a less commonly discussed but no less difficult experience is that of medical menopause , a potential side effect of breast cancer treatment. Similar in many ways to conventional menopause, it involves the premature arrest of a person’s reproductive cycle, usually in response to chemotherapy, radiation, or ovarian suppression, placing stress on the body and depleting its estrogen. There are a few different causes, which may or may not be permanent. Chemotherapy or Radiation-Driven This type of medical menopause is very person-specific, and may occur in some while not in others. It is thought to be a protective mechanism undertaken by the body in order to keep cancer therapies from harming fertility. In some cases , menopause is transient, and fertility returns after treatments have ended. In other cases, however, menopause is permanent. This is usually the case for people who were already close to menopause, commonly for those age 40 and above. Treatments such as CMF therapy, composed of Cytoxan (cyclophosphomide), Trexall (methotrexate), and Adrucil (5-fluorouracil), or Soltamox (tamoxifen) all may put a patient at a greater risk for medical menopause. Surgical Menopause In some instances, ovary removal (also known as an oophorectomy) or a hysterectomy (removal of the uterus) is advised for those at risk for breast cancer. There are a few types of hysterectomy, but the most common is a total hysterectomy, which removes the uterus and cervix but not the ovaries. The most common hysterectomy for cancer treatment is a radical hysterectomy, which removes the uterus, cervix, top portion of the vagina, and occasionally surrounding pelvic lymph nodes. In these cases, menopause is surgically and permanently induced as reproductive organs are removed, which may cause an increased number of side effects due to the sudden nature of the procedure. Hormone Therapy Treatments Compounds such as Zoladex (goserelin) and Lupron (leuprolide) are used as treatment for hormone receptor-positive breast cancers, and may shut down estrogen production in the uterus as a side effect. Normally, once a person stops taking these therapies, function will return. However, the length of menopause may vary from person to person. Regardless of the cause, medical menopause, specifically in those with breast cancer, tends to be more symptomatic than conventional menopause. The most commonly reported side effects include hot flashes, body pain, vaginal dryness, mood changes, insomnia, weight gain, and headaches. Medical menopause, especially when very premature, can result in significant mental disruption to the person suffering from it. Even so, there are a few studied treatments to help ease the burden medical menopause may bring. Apart from hormone therapies, some antidepressants have been shown to improve hot flashes. Vaginal moisturizers are recommended to combat vaginal dryness, and calcium supplements and other bone density drugs such as zoledronic acid may be used to preserve bone density post-menopause. In terms of lifestyle changes, using natural sleep aids, talking to a mental health professional, or undergoing diet and exercise programs all may improve symptom management. If you are facing medical menopause, it is recommended that you discuss your concerns with a medical professional, as they will be able to best recommend potential treatments or management strategies tailored to your experience. If you would like to share your story regarding medical menopause and breast cancer, we’d love to hear it ! And for those looking for additional support, check out our support groups and other events . We would love to have you there, and we look forward to supporting you throughout your breast cancer journey.

By Nancy Novack, PhD Originally published on Nancy's List For many people with cancer, the costs related to their care can be very distressing. It can take creativity, persistence, and awareness to manage financial stress and difficulties during cancer. But all of us who have been “through the fire” when we receive a cancer diagnosis acquire special skills. We learn how to “mine adversity,” sharpen our perceptions, be open to possibilities, confront reality, and never give up. Financial stress is just an “add-on,” and we can learn how to address it by learning how to navigate the system. The good news is that there are many foundations, corporations, non-profits, and just ordinary great people who are committed to making the cancer experience more affordable and stress-free. Below are some helpful tips for coping with financial stress during cancer, and many resources to help you manage financial concerns. 1. Remember to Breathe — and Keep Breathing When you are first diagnosed, there is often a lot of information to digest and many feelings, such as anxiety, fear, or confusion. When my experience felt overwhelming, I found it was helpful to be as still as I could be and just breathe. It helped me take in the information in a shorter amount of time. If you are beginning to feel overwhelmed, remember to keep breathing. As you continue to make your way through your cancer experience, don’t forget about breathing those big, long breaths. They can help soothe your soul. 2. Tell Your Doctor If You are Concerned About Financial Issues Your treatment facility may have a financial counselor who can help. Always tell your doctor if you aren’t taking your medications because you can’t afford them. Your doctor may be able to prescribe generic medications rather than more costly ones, and they can offer you information about prescription assistance programs where you may be able to get your medications for free. Needy Meds and the Patient Advocate Foundation are both groups I recommend for help with medications and other cancer-related expenses. I just helped a woman who had received a huge, questionable medical bill that was causing her great distress because she couldn’t resolve the problem with her hospital. I suggested that she call the Patient Advocate Foundation, and they were able to start working with her on a solution. 3. Don’t Be Afraid to Say “YES” to Help If friends or family members, especially those who have a little financial savvy and a big dose of commitment to helping, offer their help, say “YES.” They can help you with doing paperwork, analyzing and paying your bills, checking out your insurance , gathering information about payment plans, putting in a claim for disability, and doing some of the other “dirty work” for you. Find out the names of the financial counselor and social worker at your treatment center and make appointments with them. If possible, bring along your “designated friend” who is helping with your financial responsibilities, and ask lots of questions. You can also ask friends and family to check out Nancy’s List and Triage Cancer for help. These websites have lists of many financial resources, both locally and nationally, that are available to you and those who love and care for you. There are many resources available for people with certain types of cancer , such as breast cancer or colorectal cancer; resources for people within minority populations, such as Latinos or LGBTQ+ people; and resources for specific age groups, such as children or young adults . 4. Reach Out to Organizations for Help with Cancer-Related Costs There are organizations, both private and government entities, that can support you with food expenses, dental care, general living expenses, legal resources, co-pays and other medical expenses, vision and hearing care, transportation, travel expenses, lodging, and more. I am especially grateful for the many people who commit to enhancing the quality of our lives during cancer through camps for kids, teens, young adults, and their families, as well as those who sponsor retreats, adventures, and vacations for people with cancer. I am impressed that significant scholarship money is available to teens who have had cancer or have a parent with cancer, as there are many wish-fulfillment organizations for both children and adults. There are many who help out with general living expenses. One of my favorite organizations is Cleaning for a Reason . They will clean your home for free once a month for 4 months while you are in cancer treatment. These groups want to help people who are living with cancer get the best outcome, physically as well as emotionally. It is in that spirit that they offer their hands, hearts, and personal experiences to provide hope to a person with cancer. In the time of COVID, money may be especially tight, and this stress can dominate the healing process. I researched and compiled a list of cancer foundations and support organizations that want to help. The list is very extensive and very fluid, as the situation with the COVID-19 pandemic is always changing. 5. Know You Can Negotiate Your Bills with Providers and Hospitals You have the ability to negotiate a bill with your providers or health care facility. For example, one of my clients came to me, very distressed, holding a huge bill from a hospital in San Francisco where she had received a cancer-related procedure. This young woman was a college student without insurance or funds. I suggested she go to the finance director at the hospital and simply say, “I cannot pay this bill. I am willing to pay you $5 a month for the rest of my life to handle this responsibility.” Both of us were surprised when the director smiled and said, “That’s a deal.” Here’s a personal experience from when I was in active cancer treatment. I had a fancy health insurance plan, but it did not cover many of my treatments. I received statements in the tens of thousands of dollars. After some time, I finally found out that there was a financial assistance program at my hospital, and I negotiated the bills very successfully. You can, too. Don’t forget that negotiating is an option when medical bills arrive. -- Nancy Novack, PhD, is the Founder and Executive Director of Nancy’s List , a non-profit foundation serving the physical, mental, emotional, and spiritual needs of people living with cancer and those who love and care for them. Dr. Novack is a clinical psychologist and was diagnosed with stage 4 ovarian cancer in 2004. Nancy’s List supports persons who are living with cancer and healing practitioners by sharing resources that complement cancer treatments, mitigate the stresses, and deepen the healing process. The Nancy's List community includes over 20,000 subscribers and 800+ integrative practitioners and holistic healing centers. We offer information about financial assistance, a Directory of Integrative Therapists and Holistic Centers, stories of hope and gratitude, and a book I co-authored entitled I Am With You: Love Letters to Cancer Patients.

A diagnosis of breast cancer can have a profound impact on a person’s life, both physically and emotionally. In addition to undergoing treatment and managing the side effects, many women are also faced with the challenge of maintaining their pelvic health. Pelvic floor disorders, such as incontinence and pelvic organ prolapse, are common in women who have had breast cancer due to the damage caused by chemotherapy, injections, surgery, and radiation therapy. These disorders can be both embarrassing and debilitating, making it difficult for women to live their lives to the fullest. While there is no cure for menopause (medical or not), there are ways to manage the symptoms. The Relationship Between Medical Menopause and Pelvic Health Menopause is a significant life event for women that is characterized by the cessation of menstrual periods. While menopause can bring many positive changes, such as improved mood and increased pelvic health, it can also cause some unwanted side effects, including the bladder, uterus, and rectum. During menopause, the loss of estrogen can cause these muscles and tissues to weaken. As a woman approaches menopause medically or naturally, she may experience a wide range of symptoms and side effects due to hormonal changes. These symptoms can include hot flashes, night sweats, sleep disturbance, vaginal dryness, mood swings, and pelvic floor prolapse. This can lead to painful intercourse or a loss of interest in sex. In addition, anxiety and depression are common side effects of surgical menopause, which can also affect sexual function. While medical menopause can have a significant impact on a woman's life, it is important to remember that there are treatments available to help manage the side effects and preserve sexual function. In addition, lifestyle changes such as regular exercise, stress reduction, and a healthy diet can also help to alleviate menopausal symptoms. If these measures are not effective, there are also a variety of medical treatments that can be used to manage the symptoms of medical menopause. As every woman experiences menopause differently, it is important to work with a healthcare provider to find the best approach for managing your symptoms. Tips for Maintaining Pelvic Health During Medical Menopause Fortunately, there are treatments available that can help women manage their pelvic health after a breast cancer diagnosis. By working with a pelvic health specialist, physiotherapist/physical therapist, women can develop a customized plan that includes exercises, dietary changes, and other lifestyle modifications. For more serious cases, while controversial, estrogen therapy may be recommended as a final line of treatment. With the right care plan in place, women can maintain their pelvic health and quality of life after a breast cancer diagnosis. The Importance of Maintaining Pelvic Health Pelvic health is important for all women, especially those who are going through medically induced menopause due to breast cancer treatment. There are a number of things that women can do to help maintain pelvic health during this time. First, it is important to maintain a healthy weight. Carrying extra weight can put strain on the pelvic floor muscles, which can lead to prolapse and other problems. Second, women should avoid smoking. Smoking increases the risk of pelvic floor damage and can also contribute to cancers of the reproductive organs. Third, regular exercise is crucial for pelvic health. Strengthening the muscles of the pelvic floor can help to support the organs and prevent prolapse. Finally, it is important to see a doctor for regular checkups. Early detection and treatment of problems are essential for maintaining pelvic health. With proper management, women with medical menopause can live full and healthy lives.

In 2022, there were 3.8 million people who were being treated or had completed treatment for breast cancer in the US (1). After treatment, many people who no longer have evidence of breast cancer will receive follow-up care and monitoring for potential recurrence. Many people with breast cancer are counseled that an estimated 30% of people will experience a recurrence (2). In this post, we’ll share key information about breast cancer surveillance and recurrence. We’ll also discuss the Signatera™ Residual Disease Test, which can help people treated for breast cancer and their doctors stay on the lookout for recurrence. What Does Breast Cancer Surveillance Mean? Breast cancer surveillance refers to the follow-up period after you have finished treatment for breast cancer. Your treatment will depend on the stage and type of your breast cancer and can include surgery, chemotherapy, radiation, hormone therapy, or a combination of these treatments. After treatment, your oncologist will set you up with follow-up care to address any ongoing health concerns and monitor you for any signs that the cancer may be returning. This period of active surveillance following breast cancer treatment usually lasts about 5 years. However, you can remain under surveillance for the rest of your life as long as you continue to receive cancer monitoring tests. What Are My Options for Breast Cancer Surveillance? Your surveillance plan may include physical exams, mammograms, pelvic exams, bone density tests, and/or other imaging or blood tests (3). Your oncologist will determine which of these options is best for you and how often you should receive them. Typically, you will have more frequent exams and tests during the first year of your breast cancer surveillance. After that, these appointments become less frequent if you continue to remain free of evidence of cancer. Find more information about surveillance and follow-up care after breast cancer treatment here . The American Cancer Society also provides helpful printable forms to help you keep track of your follow-up care. How Can I Be Confident In My Breast Cancer Surveillance Plan? During surveillance, you may wonder if your cancer is coming back. About half of breast cancer survivors live with a moderate to severe fear of recurrence (4). This concern can sometimes affect their quality of life. The experience of tapering off care team visits and interactions can also contribute to anxiety about recurrence. Your care team visits may feel few and far between compared to the period during treatment. If you have any concerns about your surveillance plan, it’s crucial to talk to your care team to ensure you have the information you need to feel confident. What Are Signs That My Cancer May Be Coming Back? Sometimes, despite receiving the best available treatment, a person may experience a recurrence of their breast cancer. This happens because a small number of cancer cells survived the initial treatment and grew into a tumor ( 5 ) . Your risk of recurrence depends on the stage and type of breast cancer you had and how it was treated, as well as other factors such as your age at diagnosis (6). Breast cancer recurrence is detected through imaging and/or signs and symptoms. During your surveillance period, if you notice changes in your breast tissue, pain, swollen lymph nodes, or other concerning symptoms, contact your care team. Some people will have a recurrence detected on routine surveillance imaging, such as mammography, even if they are not experiencing any symptoms. These standard detection methods are the most sensitive when the recurrent tumor is large enough to be visible on scans or to cause noticeable symptoms. They are not always able to detect molecular recurrence—the presence of small traces of cancer that can grow into a tumor. What is SignateraTM for Breast Cancer Surveillance? The SignateraTM Residual Disease Test is a personalized blood test developed by Natera to help people with breast cancer and their doctors watch for recurrence. It works by testing your blood for microscopic pieces of tumor DNA called circulating tumor DNA (ctDNA). When used at regular intervals over time, along with other tests recommended by your doctor, Signatera™ may detect traces of recurring breast cancer ahead of standard tools like imaging. Each Signatera™ test is custom-built for your unique breast cancer using a sample of your original tumor tissue, usually taken from a block of tissue saved during a surgery or biopsy. After your Signatera™ test is designed, you only need to provide a blood sample each time your oncologist orders Signatera™. How Do I Know If Signatera Can Help Me During Surveillance? Signatera™ can provide additional information to inform your surveillance period. Since it works by detecting tiny molecules of your cancer’s DNA, it can help your oncologist determine if traces of cancer are left after treatment or are coming back. Each time you receive a Signatera™ test, your results will show whether ctDNA was detected in your blood. If you receive a positive result, your cancer may be more likely to come back, and you and your doctor can formulate a plan to optimize your care. If you receive a negative result, ctDNA was not detected. If you receive multiple negative results with repeated testing, you are more likely to remain recurrence-free. Signatera™ can be used on a repeated (or serial) basis at a frequency recommended by your doctor (every six months, for example), so it can show if your ctDNA levels change over time. How Can I Receive Signatera™ Testing? Ask your oncologist if Signatera™ can help you. Natera has developed a discussion guide that you can download and use to guide the conversation. The testing process is streamlined and convenient for patients and their clinicians. You can learn more about Signatera™ at natera.com/breastcancer. “ I can take a plan of action. My oncologist can set up a plan for me early on, before it develops into something that's too late to treat. ” – Rachelle, entrepreneur, advocate, and breast cancer survivor “SignateraTM gave me a sense of calm and empowered me with knowledge regarding my potential risk for recurrence . ” – Cynthia, advocate for early detection and breast cancer education, breast cancer survivor Disclaimer Signatera™ has been developed and its performance characteristics determined by the CLIA-certified laboratory performing the test. The test has not been cleared or approved by the US Food and Drug Administration (FDA). CAP accredited, ISO 13485 certified, and CLIA certified. © 2022 Natera, Inc. All Rights Reserved References 1. Key statistics for breast cancer. American Cancer Society. Accessed September 19, 2022. https://www.cancer.org/cancer/breast-cancer/about/how-common-is-breast-cancer.html 2. Colleoni M et al. Annual Hazard Rates of Recurrence for Breast Cancer During 24 Years of Follow-Up: Results From the International Breast Cancer Study Group Trials I to V. J Clin Oncol . 2016;34(9):927-935. doi: 10.1200/JCO.2015.62.3504 3. Mammograms after breast cancer surgery. Accessed September 19, 2022. https://www.cancer.org/cancer/breast-cancer/screening-tests-and-early-detection/mammograms/having-a-mammogram-after-youve-had-breast-cancer-surgery.html 4. Gormley M et al. Exploring the effects of genomic testing on fear of cancer recurrence among breast cancer survivors. Psychooncology . 2021;30(8):1322-1331. doi: 10.1002/pon.5679 5. Recurrent cancer. National Cancer Institute. Accessed September 19, 2022. https://www.cancer.gov/types/recurrent-cancer 6. Fillon M. Breast cancer recurrence risk can remain for 10 to 32 years. CA Cancer J Clin . 2022;72(3):197-199. doi: 10.3322/caac.21724

By Kristen Carter It’s so easy when we have breast cancer and when we experience awful side effects to think of ourselves as victims of our circumstances. While it absolutely sucks to get cancer and its side effects, it’s how we think about it – and the actions we take – that can make the difference between feeling like helpless victims or empowered participants in the treatment process. (It’s even true that we choose to be treated; technically, this is up to us.) There’s a construct in psychology called the drama (or victim) triangle that describes the victim situation perfectly. Fortunately, there’s also a positive alternative, which I’ll get to in a moment. First, here’s a little more information about the victim triangle: First, there’s the victim , us, to whom breast cancer happens. Next, there’s the persecutor – the thing or person that causes us to feel victimized - in this case, the breast cancer itself. Finally, there’s a rescuer , who swoops in to help us – in our case, doctors and treatment. You can see how disempowering this scenario is; it removes virtually all sense of personal agency from us. If you ever feel a bit victim-y, here is a new way to think about things. It’s called The Empowerment Dynamic , or TED for short. Developed by consultant and author David Emerald , TED offers us the opportunity to choose our responses to life, regardless of the circumstances. In it: The victim becomes a creator who is aware that they have the capacity to create outcomes and choose how to react to life’s challenges. The challenger , as the antidote to the persecutor, is simply a fact or circumstance that offers the opportunity to respond to and learn from all of life’s experiences. The coach takes over for the rescuer and offers the ability to learn from asking powerful questions without swooping in to fix things for us. The coach can be a friend, an actual coach, or even yourself, using the TED book or workbook . At the heart of the empowerment dynamic is learning to shift from reacting to choosing our response to what happens to us. I first discovered TED in 2018, the year of my metastatic breast cancer diagnosis. It resonated deeply with me because of my cancer, but also because it turned out I’d learned some victim-y behavior from my family. As a result, I made 2019 my ‘year of creativity’ and made something – and posted it to Facebook – every day that year. Sometimes it was as simple as sharing a photo I took of a wildflower, but I did it. It was life-changing. My mindset shifted, and I thought, felt, and behaved differently. I went from occasionally feeling powerless and sorry for myself to feeling more focused on what I wanted to create, that I was dedicated to my continued growth as a person despite my diagnosis, and that I had the choice of how to think about and interpret what happened to me. Instead of giving up and having little energy for positive action, I started taking more responsibility for making choices and then taking steps toward what I wanted to bring about in my life and in the world. After my year of creativity, I even started a weekly newsletter and blog called “So now what?” to share what I’d learned with other people going through challenging circumstances. In 2022, I started writing for Surviving Breast Cancer as well. The result has been more connections with awesome people, a sense of meaning and purpose, and a feeling of accomplishment. I truly wish for you a minimum of feeling helpless in the face of your cancer and all that goes with it, and empowerment within your life. If you have any questions about evolving from a victim to a creator, please email me at kristen@survivingbreastcancer.org . I’d be happy to help.

#FeatureFriday As difficult as it may be to grapple with breast cancer as a patient or a survivor, it’s important to remember that caregivers may also experience their own struggles in trying to manage a breast cancer journey. Whether it’s understanding a new diagnosis, managing lifestyle adjustments, treatment regimens and doctor’s appointments, or grieving a loss, caregivers have their own, often difficult experience with breast cancer, which may come with a variety of different emotions and mental states. At SurvivingBreastCancer.org, we want to help support you through a breast cancer journey- whether you have or had breast cancer, or whether you are or were a caregiver to someone facing breast cancer, we are here for you. In order to help those who may be facing challenges as a cancer caregiver, we’ve compiled a collection of studies, articles, and support resources to bring awareness to some commonly experienced situations and feelings. Two Models of Caregiver Strain and Bereavement Adjustment This article examined two different groups of potential caregivers to those with terminal breast cancer- spouses and adult daughters - and examined how caregivers in these two roles might differ in coping with being a caregiver, as well as how well caregivers were able to manage when their loved one passed. Researchers examined two models of bereavement adjustment before and after caregiving: the Relief Model, which predicts that mental stress would reduce following the end of caregiving responsibilities, and the Complicated Grief Model, which predicts that mental strain would increase following the end of caregiving responsibilities. Overall, they found that regardless of role (spouse or daughter), older caregivers coped better with the loss of a loved one, as measured by anxiety/depression symptoms and resource losses over time. While spouses showed a significant correlation between these metrics and overall coping status following loss of a loved one, daughters did not exhibit a correlation. Overall, these results confirm that caregiver grief is a complicated process, and the experience of it may vary depending on a caregiver’s relation to the person with breast cancer. Read More 6 Tips for Caregivers From People Living With Metastatic Breast Cancer Members of the Breastcancer.org community living with metastatic breast cancer compiled a list of suggestions for those acting as a caregiver to someone with breast cancer. Their suggestions include: Delegating tasks to outside support systems Caring for yourself physically and emotionally Being proactive in medical settings to advocate for your loved one Making room for your loved one’s emotions Creating a communication plan to effectively share and get information Continue to support a life outside of cancer/cancer care If you want to see these suggestions in more detail, Read More Here. Tuning To the Concerns of Caregivers A cross-sectional study was conducted in 2008 by the American Cancer Society , interviewing cancer caregivers across the country. One of their more notable findings was that caregivers who have experienced the loss of their loved one have a particularly hard time coping following the loss. John Schall, CEO of the Washington D.C.-based nonprofit Caregiver Action Network, notes that “‘Intellectually, cancer caregivers know that they’re going to lose their loved one, but they are often still actively engaged in caregiving until the loved one passes’”, which can cause significant emotional upset long after a caregiver begins to grieve. To help caregivers going through this, Schall created the informational and support website helpforcaregivers.org ; other researchers such as health psychologist Hoda Badr at Mount Sinai Hospital, are testing telephone programs for cancer caregivers to prevent burnout and reduce mental strain. Read More Cancer Caregiver Support Groups The James Cancer Hospital at Ohio State University regularly holds virtual support and information sessions on a variety of cancer topics. Below are a couple of caregiver-focused sessions that will be held in the near future: Caregivers and Coffee Support Group : This group meets on the second Wednesday of every month, and is a space for cancer caregivers to discuss their stories, experiences, and concerns. Pregregister for the latest upcoming meeting here . Caregiver Grief: Life After Loss Workshop : This workshop will address the unique grieving processes experienced by caregivers, and aims to give strategies and techniques to those facing grief following the loss of a loved one. Register here . Living Well with Cancer as an LGBTQ+ Person: Resources for Cancer Survivors and Caregivers : This monthly seminar provides information on a number of topics relating to cancer and the LGBTQIA+ community. It is open both to cancer survivors and to caregivers, and aims to provide education and coping resources in a welcoming, inclusive space. Register here . For those who are interested in some of The James’s other seminars, their full schedule can be found here. We hope that these resources provide some much needed information and support, specifically in regards to a breast cancer caregiver’s journey. For those looking for additional support, the SurvivingBreastCancer.org app has community discussion boards and private groups so that you can connect with others and get peer to peer support. Also, check out the SurvivingBreastCancer.org caregiver’s support resources here .

By Rod Ritchie A guy is generally blindsided by a breast cancer diagnosis, whether it be early stage or Stage IV. After the initial shock of hearing the word, “sorry to say, you have breast cancer,” I discovered from a wide internet search that most information about the disease was very clearly aimed at women. No surprise here, since we make up less than one percent of new cases. Once I was told the type and stage of cancer, Inflammatory Breast Cancer, Stage IIIB , I felt an urgency to learn all I could about treatment and even its prognosis. I ended up on many useful support forums and asked as many questions as possible. At appointments with healthcare professionals, I was sure to take my partner as both a record keeper and a person to ask those questions a patient in shock obviously won’t ask. Social Media After treatment commenced, and the questions mounted up, I found a good place to find further information was with one of the major breast cancer communities, BreastCancer.org , which had hundreds of threads and over 100,000 members. Unfortunately, very few men posted here, but over the years, there has been a storehouse of posts, and these answered many of my questions. There are also male breast cancer Facebook support pages, some private, some public. Man Up to Cancer is a general page for all male cancers, but with a male breast cancer cohort. The Male Breast Cancer Global Alliance has a public Facebook page. Both are ready to help newly diagnosed guys with any questions they might have. I am also part of Surviving Breast Cancer’s Private FB group , which is open to those diagnosed (men and women) as well as caregivers. Another Facebook support page recommended to me was Beyond The Pink Moon , a very large community of women and men who have been helping each other for 12 years now. While I didn't find many men here at first, that’s not the case nowadays. Obviously, due to the stigma affecting guys with this disease, they are shy about posting on a predominantly female forum. Genetic Testing A genetic test i s recommended for all men with breast cancer. In my case, since my mother passed away, aged 40, from the disease, it could have been expected that I inherited the disease. It turned out that I had a variation of unknown significance of the BRCA1 gene. This is an ambivalent result of no clinical significance. Treatment Most of the information about treating male breast cancer comes from doctors’ experience with treating female breast cancer. The main treatment for breast cancer in men is surgery to remove the tumor . This is usually a mastectomy because of the small size of the male breast. Chemotherapy is the most common adjuvant treatment after surgery, and your oncologist will work out a regimen that best suits your type and stage. Radiation can also be used as adjuvant therapy. Male breast reconstruction is almost always performed as a “delayed” procedure, after completion of all other breast cancer treatments. You may be lucky enough to be assigned to a breast care nurse at your hospital. Whilst these expert nurses are more commonly dealing with women, I found they really were a great source of information and support for guys as well. Finally, the hormone-blocking drug, Tamoxifen, is prescribed for at least five years. Men generally have a poorer prognosis because of their reluctance to see a doctor in a timely fashion. And when they do present, their health practitioners are often not thinking of breast cancer as a possible diagnosis. There is also no screening program for men, even for those with a genetic predisposition to the disease. And mainstream breast cancer charities are not pushing hard enough the message that men can get this disease too. Don’t fall into this cohort, know your risk, check yourself, and present to your primary care provider in a timely fashion. --- Rod Ritchie is a Sydney-born writer, internet publisher, and breast cancer patient activist, living with breast and prostate cancers. Currently, he’s NED for both. He’s the president of Male Breast Cancer Global Alliance and on the board of directors, has a website at MaleBC.org , and you can follow him on Twitter @malefitness His articles for Health Union can be found here: https://advancedbreastcancer.net/author/traveltext

According to the World Health Organization, breast cancer is the most common cancer among women, with an estimated 2.1 million new cases a year. In fact, 1 in 8 women worldwide will develop breast cancer at some point in their lifetime, and for women with disabilities , that number is even higher- and a serious public health concern. Though these statistics are sobering, there is good news: thanks to early detection and improved treatment options, the death rate from breast cancer has been steadily declining over the past few decades. For women with physical disabilities, getting a mammogram – which is currently one of the methods for detecting breast cancer early – can be a challenge. This is because many mammography machines are not designed to accommodate people with disabilities, and even when they are, the process of getting a mammogram may be more uncomfortable, difficult, or entirely impossible, based on the resources available at a given mammography site. Here, we’ll break down why it might be more difficult for those with disabilities to get screened, and some resources that may help to make the screening process easier. Firstly, What is Breast Cancer Screening? For any person, but more commonly for cisgender women and people who have a uterus, the potential for breast cancer is a reality of life. Many manage this by getting breast screenings regularly, often via mammography . This common exam involves taking an X-ray of the breast to find any potential cancerous tissue that would not have otherwise been detected. Mammography, summarized, is the process of using low-dose X-rays to examine breast tissue for early detection of breast cancer. The X-rays are used to create images of the breast, which are then read by a radiologist. There are two kinds : breast screening mammograms are used to detect breast cancer in people who have no symptoms of the disease, while diagnostic mammograms are used to evaluate breast changes that have been found on a screening mammogram or to investigate breast symptoms, such as a lump, pain, or nipple discharge. While mammograms might seem uncomfortable and inconvenient, most people are able to get one without any issues. However, for some people, such as those with disabilities, getting a mammogram is not always easy ; this can have long-term consequences on health if not adequately addressed. Why Does a Disability Make it More Difficult to Get Screened? Breast cancer screening participation rates are lower among women with disabilities than among women without disabilities. There are a number of reasons why mammograms can be difficult for people with disabilities. For example, some people with mobility impairments may have difficulty getting onto the exam table. Many people with disabilities have difficulty getting to and from medical appointments. This can be due to a lack of accessible transportation or because they need assistance from someone else in order to get to their appointment. People with disabilities face both financial and non-financial barriers to access that may result in delayed detection and increased risk of poorer outcomes from breast cancer. Providers require education about working with women with disabilities. Others may have sensory processing disorders that make it difficult to tolerate the touch and pressure of the exam. And still others may have cognitive impairments that make it difficult to understand and follow the instructions during the exam. Finally, some people with disabilities may not receive the same level of education as those without disabilities about the importance of breast cancer screenings and other preventive health measures. This can make it difficult for them to understand the importance of getting screened and make informed decisions about their health care. These difficulties can lead to missed or delayed breast screenings, which can in turn lead to higher rates of breast cancer for people with disabilities. In one study , for example, women with physical disability had a 1.3 times lower odds of having a mammography done compared to women without a physical disability. This is not a problem unique to breast cancer- many different diseases are less commonly screened for in those with both mental or physical disabilities. There are a few hypothesized and documented reasons for this, including inaccessible exam rooms/equipment, not having a car or reliable transportation, issues with the cost of care, a lack of external support systems, a lack of education on the importance of cancer screenings, or a decreased priority on breast screening when compared to managing a pre-existing condition. Regardless of the reason, however, in a UK-based study , disabled women were up to 50% less likely to get screened for breast cancer, while in the US, the CDC reports that there are 10% fewer women who have received a mammogram between 2008-2010 when compared to women without disabilities. In every U.S. state and territory, there is a disparity between disabled and non-disabled women in rates of mammography, with disabled women. Given that mammography is one of the main ways that early-stage breast cancers are discovered, and generally speaking, the earlier a cancer is discovered, the more likely it is to be managed successfully, the fact that fewer disabled women/uterus-owners are getting mammograms indicates that they are at a greater risk for future complications related to breast cancer. Especially given that being a disabled woman, in general, will hinder access to healthcare , not only related to breast screening, the limited availability and accessibility of mammograms to disabled individuals often negatively impact the health of those affected. Health Literacy and Breast Cancer Health literacy is the ability to read, understand, and use health information. It is an important factor in understanding the importance of breast cancer screenings and other preventive health measures. Low health literacy often results in difficulty understanding and using health information, whether it is for one’s own care or for that of a loved one. This can make it difficult for people to make informed decisions about their health care. There are a few things that can be done to improve health literacy at the provider level: one is to provide clear and concise information about breast cancer screenings and other preventive health measures. Another is to use plain language when providing this information, and provide patients with opportunities to ask questions and get clarification about what they have read or heard. This can help ensure that they understand the information and can make informed decisions about their health care. Improving access to breast cancer screenings for women with disabilities is an important step in ensuring that all women have a chance to receive the screenings they need. By removing barriers and providing clear and concise information, we can help ensure that all women have the chance to receive the screenings they need and improve their health. Publications such as the Disability and Health Journal , and regular, national-level screening programs such as the National Health Interview Survey are great sources of information on healthcare issues related to disability. How Can Health Providers Support Someone with Intellectual and Developmental Disabilities When They are Getting a Mammogram? There are several ways that health providers can make breast cancer screening more accessible for people with disabilities. One way is to use adaptive equipment that can help people with physical disabilities position themselves correctly for a mammogram. Another way is to provide support during the mammogram itself, such as by helping to position the person or by providing verbal cues. Finally, it is important to make sure that people with intellectual and developmental disabilities understand what is happening during the mammogram and why it is important to get one. This can be done by using clear and concise language, providing visual aids, and taking the time to answer any questions that the person may have. If you are a healthcare provider who works with people with disabilities, we urge you to take advantage of these resources to make breast cancer screening more accessible for your patients. By doing so, you can help ensure that everyone has an equal opportunity to detect breast cancer early and improve their chances of survival. What are Some Steps We Can Take? There are some concrete steps that can be taken to make mammograms more accessible for people with disabilities. For example, accommodations can be made for people with mobility impairments, such as providing a ramp or lift to get onto the exam table. Sensory processing disorder can be accommodated by providing headphones or other noise-canceling devices to reduce the impact of the sound of the machine. And clear and concise instructions can be given to people with cognitive impairments to help them understand and follow what they need to do during the exam. While these accommodations can make a mammogram more accessible, it is important to remember that they are not always perfect. For example, a ramp or lift may not be available at all mammogram locations. And even when accommodations are available, they may not be used properly or may not be enough to make the exam accessible for all people with disabilities. What Resources are Currently Available for Someone Living with a Disability to Get Breast Cancer Screening? There has been a growing focus on breast screening services for those living with a disability. The CDC has compiled a collection of state and national programs that aim to support those with disabilities in getting access to cancer screening. Here are a few highlighted programs: “Every Woman Matters” - A multimedia exhibit highlighting the breast cancer journeys of Montana residents living with a disability. Additionally, the Montana Mammography Directory lists places within the state where mammograms can be found. Mammography Accessibility Project - Created by the Oregon Office on Disability and Health, this web resource lists locations within the state where accessible mammograms can be found The Right to Know Campaign - This CDC initiative aims at increasing awareness for the importance of mammography for disabled individuals within the U.S. It features breast cancer stories from disabled women, as well as informational resources. Mammography Van - Run by Dana Farber Cancer Institute , the Mammography Van is a mobile, digital mammography location that visits communities in the greater Boston area to increase the availability of screening to those who might not be able to travel far for one. The schedule is regularly updated and can be found here . Find a Mammogram Near You - The FDA created a website that allows you to search for a mammography location in your area. For those who are looking for a site, this is a great place to start. However, it is recommended that you call ahead to find out more details about the kinds of accessible measures available. There are a Few Ways in Which People with Disabilities can Advocate for Breast Cancer Screenings: - Firstly, it’s important to be aware of the resources that are available to you (which we listed above). Knowing what is available to you and how to access it is key to ensuring that you get the care that you need. - Secondly, reach out to your local disability community and see if there are any initiatives or programs already in place that you can get involved in. If not, see if there is interest in starting something up! - Finally, spread the word about the importance of breast cancer screenings for disabled individuals. Talk to your friends, family, and peers about why this issue is important too. Take Action As we’ve discussed above, while mammograms are the most common breast screening for cancer, they can be difficult or even impossible for some women with disabilities to get. This can lead to problems such as late detection, decreased survival rates, or cancer-related death. We know that early detection saves lives, which is why it is so important that we work towards increasing the accessibility of screening tools for those facing disabilities. There are many organizations working to make breast cancer screenings more accessible for all women, but there is still more work to be done. We hope that these resources explain the intricacies of disabilities and breast cancer screenings a bit further, specifically in regard to your breast cancer journey. If you are a disabled individual or know someone who is, we urge you to take advantage of the resources that are available to you. Getting a breast cancer screening is an important step in taking control of your health. And for those looking to get involved in the movement to improve access to screenings for disabled individuals, there are many ways to get involved and make your voice heard! Together, we can make sure that no one gets left behind in the fight against breast cancer. Do you have a breast cancer story and experience living with a disability that you would like to share? Please reach out to us – we would love to hear from you ! For more information and resources on breast cancer, please visit our website at SurvivingBreastCancer.org.

When you’ve been diagnosed with breast cancer, there's a lot to consider. The physical, emotional, and mental health needs can be overwhelming. The emotional concerns — like dealing with the stress of a diagnosis, accessing financial and legal resources, and worrying about how you can continue to care for yourself and your family — are as impactful as the physical ones. Both can affect your ability to cope and follow a treatment plan. Fortunately, there are several things you can do to (hopefully) ease a challenging situation. Many of the suggestions come directly from those who have been diagnosed with breast cancer, oncologists, nurses, and social workers. Some are practical, while others are designed to lift your spirits. Get Specifics About Your Diagnosis and Treatment Plan Learning you have breast cancer can be daunting. However, obtaining as much information as possible will help you make decisions about your care. Even if you’re initially in shock, eventually, you’ll have many questions. Write any questions you have in a notebook or record a memo on your phone; this way, you can refer to them at your appointment. Then, take notes on the answer your medical team provides. It’s difficult to grasp all the information your medical team is sharing with you. If possible, take a friend or family member to your appointments who can act as your advocate. It may be helpful for this person to also take notes. We also recommend requesting a copy of their pathology report and treatment plan to review at home. Most importantly, don’t hesitate to ask your doctor to clarify anything you don’t understand. It’s okay to say, “I’m sorry, could you please explain that again?”, “Could you write that down for me?”, or "How do you spell that?" Friends in our breast cancer community often wish they had asked more questions during their initial appointments, which is why we’ve put together the top list of questions to ask your breast cancer oncologist, radiologist , and surgeon . Seek Help To Navigate Financial Issues The added burden of worrying about your financial situation can impede your ability to cope and heal. Hospitals and clinics have social workers, patient navigators, and financial services departments that can help you manage financial concerns and deal with private insurance companies, Medicare, and Medicaid. A healthcare provider, such as your physician, nurse, or social worker, may have information on financial resources. Most hospitals and treatment centers have financial counselors. They can help you with the details of your insurance paperwork and give you an estimate of the cost of your treatment. Financial counselors can also help you work out a payment plan. If you are unable to pay, some places may be willing to reduce or waive some costs if you ask. Hospital discharge planners, patient service offices, nurse navigators, and patient navigators may also have information on resources and advice about financial matters. For questions about your insurance policy, state insurance agencies and insurance companies can be helpful. No matter your income, you may qualify for financial aid from federal, state, or local programs. A financial counselor at your hospital can help you learn about these programs. Many organizations offer financial assistance and help with travel, lodging, and medical items, including prescription drugs. Some are listed below: Affordable Care Act (U.S. Department of Health and Human Services): Find information on choosing a health insurance plan and the Affordable Care Act. A.M. Best: Find official insurance company ratings. American Association of Retired Persons (AARP) : Find detailed information on Medicare and other health insurance programs for people over 50, or call 888-OUR-AARP (888-687-2277) American Cancer Society : Understanding Financial and Legal Matters: Find information on financial topics. Call 800-ACS-2345 (800-227-2345) for more information. HealthWell Foundation : The HealthWell Foundation is a national non-profit organization that provides financial assistance to insured Americans who struggle to meet their out-of-pocket costs for medical treatments. Email them at grants@healthwellfoundation.org , or call at (800) 675-8416. At SBC, we have articles related to finances, so be sure to check out these resources as well. Incorporate Exercise If you’re not already exercising, include it in your routine. Gentle exercise — like walking, yoga, tai chi, swimming, or water aerobics — is vital for the mental and physical effects of treatment. In addition, some patients claim that regular exercise helps with the mental fogginess that affects some during and after chemotherapy, known as “chemo brain.” Gradually increasing exercise after treatment can also help improve fatigue and rebuild muscle tone. It might even help with long-term cancer remission- a study published in 2021 found that women who exercised regularly both before and after treatment had a better long-term prognosis and increased survival. If you’re looking for ways to stay active during or after your breast cancer treatment, SBC has a twice-monthly Movement Monday class- we’d love to see you there! Anticipate Possible Physical Changes Treatment may cause physical changes, which can be different for everybody. Prepare yourself to deal with any changes. Ask your healthcare provider what may change. For example, medicines may make you lose your hair. Seeking the advice of experts about clothing or wigs may help you feel more comfortable as you go through treatment. Insurance will often pay for wigs. Take Things One Day at a Time We realize this can be easier said than done, but cancer treatment and recovery are a process. Try to take things one day at a time to make life more manageable and reduce your stress. Find Your People Community is vitally important when dealing with cancer and treatments. Having a support network that you can rely on can help you cope. Identify those people you can count on when you need support, and realize that some people are better at delivering practical help while others are best at giving emotional support. Although the support of your loved ones is essential, it can be challenging for people who don’t have breast cancer to understand how you’re feeling. It can help to talk with people who have faced similar challenges. Other survivors can share their stories and give insight into what to expect. Knowing long-term survivors can help you realize that breast cancer doesn’t automatically mean you’re doomed. Online breast cancer support groups, like Surviving Breast Cancer’s global community , ensure you’re never alone. Instead, you’re surrounded by others who have been touched by breast cancer and are generous with their stories. Practice Mindfulness Mindfulness has many well-documented benefits , including helping people cope with cancer. Cancer and cancer treatments can be extremely stressful. The practice of mindfulness includes breathing techniques and guided imagery. Mindfulness can help reduce stress and calm your mind to help you feel more peaceful. You can start mindfulness by setting aside one minute to slow down and breathe: Find a quiet spot where you can be alone for a few minutes. Sit down, take a deep breath, and close your eyes. Notice your breath. Other thoughts will pop up in your mind at some point (usually pretty quickly). That’s okay! Just bring your attention back to your breath. Focus on your breathing right here, right now. Rely on Experts The internet is a wonderful tool for research, but there’s a lot of misleading and false information. So it’s vital to find trustworthy sources. Pay attention to who owns the website and select advice from credible sources. If something piques your interest, discuss it with your doctor. There are hundreds of ongoing clinical trials of many new breast cancer therapies; a list of NIH-funded trials can be found here . Allow Yourself Bad Days You’re allowed to have bad days. Some days, you might just feel frustrated, angry, or down. That’s okay. Give yourself a break. Talk to Someone Receiving a cancer diagnosis and going through treatment is a lot to handle, and it’s not surprising that you might feel engulfed in emotions. It might be a good idea to seek help from a psychologist or social work counselor after your diagnosis or any time you need someone to talk to during or after treatment. They can help you address and work through your feelings and guide you to help you cope. Be Your Own Advocate You know your body better than anyone. If something feels off, speak up. Finding a doctor who will listen to your concerns and take them seriously is critical. It can save your life! It may also be beneficial to get multiple professional opinions to see if there is an alternate treatment course that may be better for you. Don’t be afraid to get a second, or even a third opinion, to get as much information as possible. Be Kind to Yourself Everyone responds differently to treatment. Recovery can take longer than you expected, and you may also have to deal with side effects from your treatment. Your care team can help you set realistic expectations for how long your recovery might take and when you might feel more like yourself again. Conserve Your Energy for the Things That Matter Most Realistically, there may be days during your treatment when you feel lousy and experience low energy. Save your energy for things that bring joy to your life, and aim for a moment of joy each day. It can be something really simple, like watching a video of your child laughing or a photo of a special moment in your life. Count On Us for Information, Resources, and Support Surviving Breast Cancer is by your side every day, every month, and every year. Whether you’re newly diagnosed with breast cancer , are navigating survivorship, or are the loved one of someone experiencing breast cancer, you can count on Surviving Breast Cancer to keep you informed. We provide educational information to help you better understand symptoms, testing, treatment options , surgery, etc., and podcasts that feature professionals, advocates, and caregivers who share valuable information. Our global online community not only offers opportunities to connect with others for safe, judgment-free, peer-to-peer support but also ensures that you’re never alone. We also offer healing workshops and mindful movement classes ; you can join any of our groups . Contact us today to learn more about or benefit from our services.