By Editorial Contributor, Sue Cimino I recently attended a health and nutrition seminar by Dr. Sheryl Duchess, N.D. Although I knew the importance of Vitamin D, I was unaware of the correlation between Vitamin D and Breast Cancer. Research suggests that women with low levels of vitamin D have a higher risk of breast cancer. Vitamin D may play a role in controlling normal breast cell growth and may be able to stop breast cancer cells from growing. Testing your Vitamin D levels will help you understand your individual requirements. Ask your doctor to test your vitamin D levels next time you go in for bloodwork. When your doctor orders lab tests to check your vitamin D levels, they are measuring your calcifediol (25D), which is the metabolized form of vitamin D once absorbed into the bloodstream. Over the last decade, recommended levels of vitamin D have evolved. 35-45 ng/ml is sufficient, but anything under 35 ng/ml is considered insufficient. For peak health, 45-70 ng/ml is required. However, many individuals are not meeting these levels to support optimal health due to several factors, such as lack of sun exposure, increased use of sunscreens, and the health of your gut. What Does Vitamin D Do? Vitamin D plays an important role in cognition, bone health, heart health, and immune support. According to breastcancer.org, it also helps the muscle and nervous systems function properly. Vitamin D helps the body absorb calcium, which is essential for good bone health. I wrote about the importance of calcium in last month’s blog. How To Get Vitamin D Vitamin D comes from two main sources: From sun exposure and from food. Additionally, supplements are another way to boost your intake. Much to my surprise, Vitamin D is not a vitamin at all. It is a Pro-Hormone, 1 of 24 nutrients needed for survival. Most vitamin D is made when an inactive form of the nutrient is activated in your skin when it's exposed to sunlight. Smaller amounts of vitamin D are in fortified milk and other foods, fatty fish, and eggs. As more and more people spend most of their time out of direct sunlight or wear sunscreen when they are in the sun, vitamin D production from sun exposure is limited. I am sure, as are many of you, finding the right aromatase inhibitor that did not make me feel and move like a 90-year-old woman was a challenge. What I learned was that a high-dose vitamin D relieves joint and muscle pain for many breast cancer patients taking estrogen-lowering drugs, according to a new study from Washington University School of Medicine in St. Louis It was Rastelli's colleague, Marie E. Taylor, MD, assistant professor of radiation oncology, who first noticed that patients on aromatase inhibitors who experienced this pain found some relief from high doses of vitamin D. "High-dose vitamin D seems to be really effective in reducing the musculoskeletal pain caused by aromatase inhibitors," Rastelli says. "Patients who get the vitamin D weekly feel better because their pain is reduced and sometimes goes away completely. This makes the drugs much more tolerable. Millions of women worldwide take aromatase inhibitor therapy, and we may have another 'tool' to help them remain on it longer." In another study from the Department of Internal Medicine, University of Kansas Medical Center, Kansas City, KS, Vitamin D deficiency and insufficiency may contribute to musculoskeletal symptoms and bone loss observed in women taking aromatase inhibitors (AIs). This study was conducted to determine the prevalence of suboptimal vitamin D levels in women initiating adjuvant Letrozole for breast cancer and to determine whether supplementation with 50,000 IU of vitamin D3 weekly could reduce musculoskeletal symptoms and fatigue in women who have suboptimal vitamin D levels. What is the Difference Between Vitamin D2 and Vitamin D3? When people talk about vitamin D, it can be confusing. Have you ever noticed that you cannot walk into your local pharmacy and pick up an over-the-counter vitamin D? They are actually broken down into vitamin D2, which mostly comes from plants, or what is used in fortified products like cereal, while D3 comes from animal products like salmon, egg yolks, or fish oil. If you are deficient in vitamin D, your doctor may prescribe the 50,000 IU capsules, which are prescription only. This high dose is not for long-term use, but it’s safe to take for several consecutive weeks until your vitamin D levels are back in the normal range. The American Association of Clinical Endocrinology and the Vitamin D Council regard Vitamin D3 supplementation as necessary to support healthy bone mineral density. Vitamin K2 is a fat-soluble and supports the normal delivery of D3 to the bones, as well as promotes healthy arteries. I found the best Vitamin D3 containing 5000 IU per serving, and the necessary Vitamin K2 for proper delivery was in an Isotonic format. I spoke last month about the superior delivery system that Isotonic provides. Taking my Calcium and Vitamin D3 with K2 in an isotonic format has truly made a big difference in my quality of life.

COVID-19: How are you dealing with it? “Change is the only thing that is constant” The recent turn of events re: COVID-19 has impacted us all throughout this community. It poses an upheaval in our daily routine and drastic changes in the way we cope with our breast cancer survivor/thriver journey. I would be lying if I said that COVID-19 has not been the most predominant topic on my mind. Everyone is talking about it. They are tweeting about it. And in my case, I am even dreaming about it. It is proving quite overwhelming, and I can only imagine even more so for our breast cancer community members who are immunocompromised and are at a higher risk if exposed to the virus. Controlling our treatment journey and having a set routine is our way of feeling a sense of control in our life. With COVID-19, we have been asked to uproot any sense of control and throw it out the window. Questions to ask your oncologists Are you going to be getting your treatments? Is it safe to go in for the treatments? Are my team of doctors going to be affected and if so will I be exposed to the virus because of them? Are my medications going to be delayed? These are some of the questions that might be crossing your mind. These are all valid and relevant. Call or email your oncology team and have them assess the situation and give you a clear contingency plan if you do not have one in place already. It is most important to be calm and have a clear head when talking to your team. Write down your questions and work your way through them when you get in contact your doctors. Throwing ourselves into work, or creating a private space to meditate while the rest of the family is at work or school is some of the ways we gave ourselves a break from dealing with cancer treatments, setting up appointments and paying those God awful expensive bills. But that has all changed. Right now, we must work from home, and it is hard to constantly have the entire family under the same roof 24/7! Now, the mental toll this is taking on us and will take on us, is going to be something we cannot choose to ignore. So, it is important to prioritize your mental health as well. Being cooped up indoors all day is detrimental to your mental and physical health. You will most likely see and feel some symptoms of cabin fever (a loose term to address the condition of being isolated from society for too long). Be prepared to feel bouts of depression, irritability, and change in your diet and sleeping pattern. They all stem from boredom and overthinking. Seek counsel and voice your concerns to your family and therapist if you can. It is better to let it out, then to keep it in. So, what can we do? Step into the sun once or twice a day for about 20 mins each time. The Vitamin D that you get will not only boost your immune system but also improve your mood. You could take a small lap around your block or step out into your patio or simply stand near the window which lets in the most sunlight. Try to engage in the activities that you have done before but from the comfort of your home like doing home workouts! You could do Tik Tok dances with your kids! Bring back old hobbies (I have started baking!) and also maybe use the time to work on that project that you may have put on the back burner. Eating healthy can also pose to be a struggle. The markets are being wiped out, with people panic buying, and hoarding. But, there are still options such as your local Asian supermarkets (Yes, they are fully stocked!), your local convenience store (Support local businesses!) and most restaurants are still delivering (There is a no-contact option!). It is more troublesome but in times of change, a little un-comfortability is to be expected! The right way to address this pandemic is to act as global citizens. Each of us has a role to play in fighting this virus. Stay home, stay hygienic, and help to flatten the curve. If you are younger (the early 20s to late 30s) and see your friends not engaging in self-isolation, do your best to educate them on how they are placing you and others with preexisting conditions at risk. We have a social and moral obligation to protect our society. Keep in your prayers, the hard-working doctors and nurses who put themselves and their families at risk each day as they help combat this pandemic. Do not forget the social workers, your waste collectors, grocery store workers, janitorial staff who all are still working around the clock. We will ride this out together and we will be the better for it at the end. Here is a list of books for your reading consideration: Meditations in an Emergency by Frank O’Hara The Japanese Lover by Isabel Allende The Hate You Give by Angie Thomas The Wasted Vigil by Nadeem Aslam The Lighthouse by PD James Babel Tower by A.S. Byant They are all available in PDF versions on Amazon 😊

It has been quite alarming reading about the current health pandemic (COVID-19). There is fear, gratitude, anxiety, and acceptance. There are plenty of emotions to go around in light of this global health pandemic. What's important to remember is that you are not alone in this. In fact, the entire world is in this with us (and us with them). They may not have breast cancer per se, but they may be dealing with an elderly parent. They may be dealing with a child who has asthma, they may be dealing with additional underlying conditions that we don't even know about because they are "invisible" illness. When I first told my parents that some of my friends are being asked to postpone surgery, I don't think it actually resonated. Breast cancer is a piece of this health pandemic and everyone is on edge. But breast cancer is very much our world! It's what I read about, it's what I research, it's what I seek out on social media. So when I tell my parents that some of my friends need to delay treatment, what I am really saying is, I'm scared, we’re scared. I've always said we need to advocate for ourselves, to push for mammograms, to get second opinions and now, all of a sudden, this is on pause? All of a sudden is the message that I am getting, is that breast cancer treatment is no longer considered "essential”? No. Not at all. Yes, that's my gut reaction, my blood boils, and I cannot understand why we would delay removing a tumor in our breast. But thank goodness, after researching and reading the guidelines and hearing all of your questions, I actually feel quite confident about the state of breast cancer and COVID-19. The medical professionals and reliable and trusted medical organizations have moved swiftly to address our questions, concerns, and have published guidelines and recommendations for how we can navigate this unprecedented time. This is what I found based on my scouring the sites of the Society of Surgical Oncology ( SSO ), the American Society of Clinical Oncology, ( ASCO ), the American College of Surgeons, and the American Society of Radiation Oncology ( ASTRO ). Please note that this information is not meant to substitute professional medical advice nor supersede i ndividual physician judgement, institutional policy or guidelines. The American College of Surgeons suggest recommendations as follows based on priority categories: Priority A: Patient condition is immediately life threatening, clinically unstable. Priority B: Patient situation is noncritical but delay beyond 6–8 weeks could potentially impact overall outcome. Priority C: Patient’s condition is stable enough that services can be delayed for the duration of the COVID-19 pandemi c. The Society of Surgical Oncology has provided these guidelines specific to breast cancer. What I find fascinating about the guidelines and the disruption to the typical sequence of treatment is that endocrine therapy is now being offered in a neoadjuvant setting. That is to say, if your tumor is estrogen driven, you may be asked to take Tamoxifen or an Aromatase Inhibitor in advance of your surgery. This is to protect you from needing to come to the hospital; yes, it will delay surgery, but given the situation, would you really want to expose yourself to COVID-19 when endocrine therapy could be a benefit? What excites me about this opportunity is that I am hopeful studies will emerge to investigate the effectiveness of endocrine therapy vs chemotherapy in the adjuvant setting and could potentially decrease the need for chemo for those diagnosed with breast cancer. (Of course, may other factors would need to be considered, but still a win in my book!) According to the American College of Surgeons , there are of course situations that need immediate attention: Neoadjuvant patients finishing treatment Clinical Stage T2 or N1 ERpos/PRpos/HER2 negative tumors*† Triple negative or HER2 positive patients*† Discordant biopsies likely to be malignant Excision of malignant recurrence *In some cases institutions may decide to proceed with surgery versus subjecting a patient to an immunocompromised state with neoadjuvant chemotherapy. These decisions will depend on institutional resources. †Encourage use of breast conserving surgery whenever possible. Defer definitive mastectomy and/or reconstruction until after the COVID- 19 pandemic resolves, provided radiation oncology services are available. †Autologous reconstruction should be deferred. According to ASTRO , "patients with rapidly progressing, potentially curable tumors may outweigh the risks of COVID-19 exposure/infection, but patients receiving radiation for symptom control or at low risk of harm due to alteration of schedule for radiation treatment visits could potentially be safely delayed.  Patients should check with their radiation oncologist to determine the most appropriate course of action for their treatment." According to ASTRO , "p atients with rapidly progressing, potentially curable tumors may outweigh the risks of COVID-19 exposure/infection, but patients receiving radiation for symptom control or at low risk of harm due to alteration of schedule for radiation treatment visits could potentially be safely delayed.  Patients should check with their radiation oncologist to determine the most appropriate course of action for their treatment." ASTRO states, "The overarching goal is to reduce the risk of transmission of COVID-19 and to allow cancer care to continue for those most likely to benefit.." What's most important is to speak with your oncologist. It is important to recognize that this is a global issue and each hospital and institution is unique with their own set of guidelines. As the Lancet Oncology mention, regarding regulatory impact, "the US Food and Drug Administration has issued guidance on managing clinical trials during the time of COVID-19, as have the US National Cancer Institute and the European Medicines Agency (EMA) . If you have specific questions you'd like us to investigate, please email info@survivingbreastcancer.org .

By Contributing Writer, Amy Ferraro Whitsett I will start with the cancer part of my story. I was diagnosed at age 45 with early-stage breast cancer. I was fortunate it was found on a mammogram before it could be felt. The worst part was the time between the second mammogram and the biopsy result. Trying to be helpful, the radiologist told me it was most likely cancer. But since breast cancer was NOWHERE on my radar, I was shocked and confused. Once diagnosed, and through the good fortune of having a well-positioned friend and a super helpful nurse practitioner as my PCP, I was seen by a team of doctors less than 72 hours later. Then I was on my way to surgery, chemotherapy, radiation, genetic testing, and anti-hormone therapy at one of the best institutions in the world. I have supplemented it with alternative medicine, lots of yoga, lots of reading, more exercise, a naturopath, and supplements. The experience sucked, but there have been silver linings. I have spent the last 25 years working in the health and human services arena, behind the scenes. I helped agencies gain funding so that they can serve consumers. Over the years, I have joked that I “kill trees to save children” or “would make a lousy social worker, so I make sure the social workers have money to do what they need to do”. I love my work, but my personal experience gave me a longing to do more on the front lines and ensure that the public understands the benefit of certain programs I have been fortunate to work with, including Medicaid. I want people to know about the positives of Medicaid and how to access it if they need to. There are two large public health insurance programs in the United States, Medicare and Medicaid: Medicare is for individuals aged 65+ and can include individuals with certain disabilities. Medicaid is a means-tested program for certain groups that do not have access to health insurance or whose health insurance is limited. There are dual eligibles, eligible for both programs. How Medicaid is Distributed Today, largely because of the Affordable Care Act (ACA), you can apply via streamlined, online systems that determine if you are eligible for Medicaid or should purchase a system via the federal or state exchange (depending on where you live). There is also a more traditional collaboration with other benefit programs, such as the Supplemental Nutrition Program (SNAP). Approximately 20% of Americans are insured through Medicaid, and Medicaid pays for nearly half of all births. Medicaid is administered by the states and territories but funded by both the federal and state governments (for the purpose of this post, state is inclusive of territories and the District of Columbia). There is a separate program, the Children’s Health Insurance Program (CHIP), that covers additional children and, in some cases, their parents, and is closely aligned with Medicaid. States must cover certain groups, for example, children at or below 138% of the federal poverty level (FPL). States then have the option to cover other groups. There are also required and optional services. Some of the services called optional in law are not optional in practice, for example, prescription drugs. It would not be practical nor cost-effective for Medicaid to not pay for prescription drugs. When Medicaid was created in 1965, prescription drugs were not part of private insurance either because they were not as prevalent as they are today, hence some of the out-of-date lingo. The ACA sought to reduce and ideally eliminate the number of uninsured in the United States by increasing the number eligible for Medicaid (Medicaid expansion) and creating marketplaces where individuals and small companies who do not have access can purchase insurance. Individuals who do not qualify for Medicaid because they are over-income may be eligible for a subsidy to help defray costs, up to 400% of the FPL. The Supreme Court ruled that the penalties imposed on states for not expanding Medicaid are unconstitutional. Thus, not all states have expanded, and there is still a sizable uninsured population. “Medicare for All” is a catchphrase that theoretically means a single health insurance program. It is more politically prudent to say “Medicare” for all than “Medicaid” for all because Medicaid is often associated with welfare. What it means varies widely, from putting everyone on Medicare as we know it, to scrapping Medicare and starting over, to expanding the ACA for all. Whatever happens, Medicaid has yielded many benefits to direct recipients and society at large. Since Medicaid was implemented, we have reduced infant mortality, improved outcomes for low-income children, provided more services for the disabled, and eased the costs of healthcare on all Americans. Medicaid is the largest funder of long-term care for the elderly and the disabled. And it will be put to the test with the COVID-19 pandemic. Does Medicaid Cover Breast Cancer Treatment? As for breast cancer treatment, if a man or woman already enrolled in Medicaid is diagnosed with breast cancer, treatment will likely be covered. If they reside in a state that has not expanded, they may not be eligible for coverage, regardless of income, if they are not in an existing coverage group. The ACA mandated that private insurance, individual insurance plans, and state Medicaid expansion programs cover breast cancer screenings at no cost in accordance with recommendations from the United States Preventive Services Task Force (USPSTF) and the Health Resources and Services Administration (HRSA). If an individual is covered by a traditional Medicaid coverage group, coverage of screenings will be based on the optional service coverage in the state, though most states will cover screenings (the preceding information is from www.kff.org ). The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) helps low-income, un-and uninsured women access screening procedures and referral to services. The Breast and Cervical Cancer Prevention and Treatment Act (BCCPTA) gives states the option to grant Medicaid coverage to women if they are uninsured, under 65, and diagnosed with breast or cervical cancer via an NBCCEDP screening. The eligibility criteria vary from state to state. As I close out this post, I am sure some of you think that it is long and technical for a blog post. Medicaid is incredibly complicated, and if you need to access it, it comes down to where you live. But it is woven into our healthcare fabric and has yielded great benefits. If you want to know more, www.kff.org is a good place to start.

A Phenomenological Study, Utilizing Bounded Rationality, Explores the Decision-Making Processes Associated with Genetic Testing for a Predisposition Towards Breast Cancer Presented at 2020 Carol Carfang Nursing & Healthcare Ethics Conference The complicated nature of genetic testing requires breast cancer medical professionals and those diagnosed with breast cancer to explore multiple outcomes with the understanding that optimal solutions may not be available, thus requiring them to select among lacking options and make good decisions based on incomplete information within the context of unknown and dynamic variables. Through the lens of bounded rationality, the findings reveal that complex decision-making evokes strong emotions and requires those diagnosed with breast cancer to incorporate a combination of strategies and processes as they maneuver through both linear and non-linear paths for acquiring information, seeking alternatives, and making decisions. ​ Purpose The purpose of this study was to explore how those diagnosed with breast cancer navigate the decision-making process associated with genetic testing. Research Question: What are the main characteristics of rational choice among those who have been diagnosed with breast cancer (or are at a high risk for developing breast cancer) in situations where complexity precludes individual implications? ​ DOWNLOAD PDF Descriptive Phenomenology Phenomenology is both a philosophical practice and a psychological scientific method.  Grounded in the works of Kant & Hegel, Husserl became known as the modern-day founder. Phenomenological research acknowledges that there is a need for understanding a phenomenon in order to improve practice.  Husserl asserts that the aim of phenomenology is the rigorous and unbiased study of things as they appear. It provides a deeper understanding of lived experiences by making evident the taken-for-granted assumptions of the phenomenon and allows the researcher to adopt an understanding of how the phenomenon presents itself to the participants’ consciousness. Specifically, descriptive phenomenology as an application is pre-transcendental and focuses on how human consciousness relates to the human world. ​ Data Analysis Critical sampling Participants – Women diagnosed with breast cancer Open-ended interviews, 60-90 minutes, recorded and transcribed Delineating units of meaning Cluster and categorize themes Structural analysis and expressions Creating the essential structure Phenomenological reduction Bracketing Memo-ing MAXQD ​ Themes Outcomes-Based Decision-Making  Surgical Options; Impact on Family Group Decision-Making Collaboration with spouse; Collaboration with doctors; Collaboration with offspring and relatives Emotional Orientation Psychological, Emotional, Stressful, Unexpected Procedural Strategies Collection of information; Processing of information ​ Findings Complex decision-making processes stem not only from the complexity of genetic testing, but also from the information (or lack thereof) that the person has at the beginning of the investigation, i.e., at the time of diagnosis. Complex decision-making involves a shift or alteration in emotion. This is captured from all of the participants as they describe their experience from wanting genetic testing wholeheartedly, to the aftermath and long-term effects, i.e., living with knowledge of the results (which can’t be reversed).  Complex decision-making can be both linear and non-linear, resulting from the outcome of the genetic test. ​ Findings in Relation to Practice Assist medical professionals in understanding the interconnectivity of linear and non-linear processes associated with complex decision-making as they endeavor to advise their patients on genetic testing. Assist practitioners in understanding the emotional and psychological impact of genetic testing and complex decision-making when perfect or complete information is not available. Listen to the stories of those who participated in the study. Coming Soon on the Breast Cancer Conversations Podcast .

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

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

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

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

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

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

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

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

By Sara Corckran When my mom asked if I was going to write something for Breast Cancer Awareness Month, I said, “No way, that’s not really me.” But clarity came with time. And... here we are. Staying true to me, I decided to tell the truth about what October really feels like... as a breast cancer survivor. Pink ribbons, sweaters, and hats. Pink signs, banners, and coffee cups. It’s everywhere. Here’s the thing... for survivors, October... sucks, at least for some of us. Whether you’ve been diagnosed or you’re supporting a loved one with breast cancer , this is for you. I’ll share what I wish someone had said to me, how to show up, and the gifts that actually help. The Ick of October Everywhere I look is a reminder. The closer I am to treatment, the worse the gut punch. Even getting in the car to run an errand can feel like entering a battlefield of pink. And that color... I just can’t. God forbid I turn on the radio or the television, only to hear the latest version of pink-washing products and treatment options being advertised. As a breast cancer survivor, October doesn’t feel like awareness... it feels like overload. Honestly, I’d be in full support of making October about prevention. Let’s dedicate the month to mammograms and breast self-exams . Remind people to check – not just in October, but every month. I am in for that. Breast Cancer Awareness Fatigue Is Real We don’t need more reminders... survivors live with it every day. Awareness month can feel like a spotlight we didn’t ask for. Yes, some survivors are celebrating. And I am happy for them – there is so much to celebrate. If that is you, then by all means celebrate! Get out the maracas and the champagne. Take a trip down memory lane and savor how far you have come, how much you are loved, how strong you are, and how much you have changed. But if you are still processing your trauma , managing your fear, and quietly dealing with the long-term effects, that is okay, too. You don’t have to like October just because you are a survivor. Why I Don’t Like October We physically feel our thoughts. So when the town is painted in pink ribbons, it feels like it’s painted in a shade of challenging memories – and sometimes shades of future fears. For those of us working hard to stay present and to live in the moment, these constant reminders can yank us back into the past... or send us spiraling into worry about the future. Who wants that? I’m a few years out, and I’ve been working hard on my fears. I’ve made progress. But give me a doctor’s appointment... and watch out. About 36 hours beforehand, the fear starts. It’s like lotion I can’t wipe off. It spreads everywhere. My thoughts go down the fear path. I get irritable. It takes real bravery just to walk through the door, let alone sit on the paper and say my full name and birthdate. Ouch, ouch, ouch. That is how October felt to me my first year out. How to Show Up for a Breast Cancer Survivor If you’re supporting someone with breast cancer, buckle up... because here comes the honesty. At least my honesty. As a breast cancer survivor, I’d prefer if you don’t ask me how I’m feeling. Just don’t. If you just can’t stop yourself – before you say anything, ask yourself this question: Is your curiosity meant to help, or is it to help you feel better? Consider trying this instead: “You have been on my mind. Hope you are doing well.” “So nice to see you... what have you been up to?”  “No need to reply, but I just wanted to reach out and let you know I’m thinking of you.” Have the Urge to Help? You may be tempted to reach out with something like: “Hey, I wanted to see if there is anything I can do for you.” Although your intentions are in the right place, you are putting the work on the person you are trying to help. Try this instead: “Hey, I’m making soup, can I drop some off for you?” “Hey, I’m going to the store, what can I pick up for you?” “Hey, I’m going to walk my dog, can I grab yours?” These offers feel good to receive. Here’s why: The person you are helping does not feel like a victim, like they need to ask for your help. You are making an offer that they can easily accept or turn down without feeling like you have gone out of your way. What Not to Give Let’s talk about a few things to skip, even if they seem thoughtful at first. Sometimes the best gift is one that doesn’t remind us of cancer at all. It’s important to understand a loved one’s preferences about the color pink or phrases that are associated with breast cancer. Here are some things that may not be as helpful as you think: Pink trinkets Slogans like “Fight like a girl” or “You’ve got this” Items that say “Survivor” or “Warrior” Of course, it all depends on their personal preference. If you’re not sure, try something that has nothing to do with breast cancer. Keep reading for ideas! What To Give For Self-Care A fiction book you loved A playlist Anything that you love: face lotion, your favorite tea, just your favorite something Electrolytes Massage Gift cards for takeout or groceries Soft wrap or cardigan Cute pajamas Thank you cards Hand lotion Chapstick Journal Awesome mug Puzzles Question cards Blanket Tea Comfy socks Sleep mask Coloring books Hand sanitizer For Queasiness Mints Gum Homemade bone broth A great cookbook For Hair Loss A good baseball hat (try a color other than pink!) Headbands Silk hair ties Silk pillowcase For Long Chemo Days Small tote bag Cooler or ice packs Travel snack containers Travel tea container Fun water bottle Small thermos “Open When…” Gifts Wrap up small gifts and include notes like: Open in October Open after Thanksgiving Open week 4 of treatment These are special because they stretch support across time. They say: “I’m here with you for the long haul,” not just for one moment. We All Have the Urge to Help or Fix As much as we might want to, a loved one’s cancer just can’t be fixed. What  is  supportive is showing up in whatever way feels natural to you. Maybe it’s phone calls, notes, regular visits, or walks. Not a one-time gift, but steady check-ins over time. Try to hold onto the “you can’t fix this, but you can help” mindset when you’re together. Your presence isn’t about solving anything – it’s about passing time and offering connection, distraction, and company . Don’t be afraid to talk about your own life: your worries, your messiness. People often stay quiet because they think their problems are small in comparison, but a bad day is still a bad day. Connection comes from being real with each other. If your friend wants to talk about treatment, let them... but don’t press or ask if they don’t. Just stay tuned in and follow their lead. As much as I don’t wish adversity on anyone, it is a part of life. We all face it, and that’s okay. We are strong. We are resilient. But not all adversity comes with a month of awareness. And I guess what I’m really saying is: the pink ribbons can make it hard to stay grounded in today. About the Author: Sara Corckran has been on both sides of a cancer diagnosis—first as a caregiver, then as a patient. The first time, she didn’t have the tools to cope. The second time, she did—and it made all the difference. Now she shares what she’s learned in her book Grit and Grace  and in her free weekly newsletter, The Heron’s Perspective . She believes that while pain is part of life, suffering doesn’t have to be the whole story. More from Sara: The Tools That Changed Everything Read More: Supporting Loved Ones with Breast Cancer: How to Offer Meaningful Help How Cancer Trauma Can Impact Your Life and Ways to Move Forward Cancer Etiquette: How to Talk With Loved Ones About Their Breast Cancer On the Podcast: Breast Cancer Conversations From Chemo to Curtain Calls, Radiation to Regattas: This Is Survivorship Share your story, poetry, or art: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

By William Laferriere one falls into the river and the breath catches not because the current is threatening (all at once), but because it wraps, it circles, it holds—water above, water below, there is only water a slow eclipse of light and sky there is a moment—spontaneous, involuntary—of clarity: submerged, the sound distorts, the pulse pounds, limbs fumble against invisible pressure, inertia settles in searching for the surface that feels impossibly far but danger isn’t the falling it is the decision not to fight, not to move, not to reach; the cold that spreads, a gentle invitation to that very stillness that cloaks itself as relief pain comes first, then numbness, then a kind of forgetting—letting the river erase the boundaries of body and will, letting the sediment settle in pockets of memory stillness grows in the silt, panic becomes resignation; the shore fades from possibility while above, the world continues its course you drown not in the initial moment, but in the moments after, in the staying, in the surrender, in the drift that becomes acceptance the surface awaits—a promise slightly muted, never denied, only neglected while the river keeps on rolling, indifferent, endless, never questioning  why you do not push upwards Share your poetry: https://www.survivingbreastcancer.org/submit-breast-cancer-story SurvivingBreastCancer.org Resources & Support: Podcast Weekly Meetup s Free Events

Should breast cancer patients receive one of the new COVID-19 vaccines? Several of these COVID-19 Vaccines are now available on a sliding scale throughout the United States and elsewhere. Breast (and other) Cancer patients are asking, “Is it safe for me to get the vaccine”? This safety issue has proven to be quite confusing and adds to the stress level of those very patients. Other questions abound, including “Is it safe for me to get the vaccine while still in active treatment”? Background On The Vaccines At the present time, there are two vaccines being administered in the US. The Moderna and Pfizer vaccines recently received approval from the Federal Drug Administration (FDA) following extensive trials, with each involving many thousands of participants. The science behind these trials was highly scrutinized, and an independent body gave the approval necessary to allow for high-speed production, storage, and implementation. (Note: the cancer community was minimally represented in these trials). Both vaccines are believed to be 94+% effective. Apparently, the only vaccine with a greater efficacy is the measles vaccine, which comes in at the 98th percentile. It is well known that cancer and the corresponding treatments have the tendency to diminish a patient’s immune system. Does this make them more vulnerable to the COVID-19 virus or to the vaccine? And how about metastatic breast cancer patients? All great questions. "The Centers for Disease Control has a committee that determines how to equitably distribute all vaccines. Known as the Advisory Committee on Immunization Practices, or ACIP, it currently recommends COVID-19 vaccines be distributed in phases and tiers. Dr. Steve Pergam, director of infection prevention at Seattle Cancer Care Alliance, said the vaccine is going first to the groups most at risk: health care workers, people in long-term care facilities, people over 75, and front-line essential workers.” [1] Then come people with additional medical issues, such as cancer. SBC's Community Findings At a recent survivingbreastcancer.org - Thursday Night Thrivers Meet Up , we queried our community to see if they 1) planned on getting the vaccine, 2) already received the vaccine, 3) if they had the vaccination, which vaccine did they get, and 4) did they experience any side effects. We acknowledge that our survey was not scientific, but it did serve to help inform our community and provide an engaging conversation for sharing and telling. Several members, including an ICU nurse and an ER physician, had received one or the other vaccine, and only one experienced exhaustion side effects. Her fatigue and headaches lasted approximately 36 hours, but now she feels fine and, more importantly, didn’t miss work in the ICU (Thank you to all of the front-line workers!) So is the vaccine safe, and should cancer patients avail themselves of it? Scientists and doctors involved in the studies feel strongly that the vaccines are safe and that everyone should get vaccinated. At SurvivingBreastCancer.org we do advise you to research the issue and discuss with your medical team directly. They also have recommendations to receive the vaccination in-between treatment cycles, etc. We do plan to get vaccinated and will keep everyone updated on when and what the experience is like! References [1] https://www.fredhutch.org/en/news/center-news/2021/01/cancer-patients-covid19-vaccine-coronavirus.html

10-12% of Breast Cancer diagnoses are believed to be attributable to a genetic predisposition. This most assuredly leaves one to ask, “Then what is the root cause of the vast majority of breast cancer diagnoses?” Certainly environmental factors may play a significant role. But how do we know? What does the research say? Could makeup, shampoos, house cleaners, food preservatives and other chemical additives/ingredients be contributing to so many diagnoses and deaths? While we cannot say with 100% certainty that makeup causes cancer, what we can identify are the known carcinogens found within these common everyday products. Cosmetic Ingredient Regulations Under the law, cosmetic products and ingredients do not need FDA approval before going to market. The FDA has actually prohibits less than a dozen ingredients and color additives. You may find it surprising that the last law regulating cosmetics was passed in 1938! A lot has changed since then, but not the regulations. The beauty industry is a $60 billion –a-year business where the average woman uses12 products with 168 different ingredients every day (according to EWG.org) When I read this, I thought, that couldn't be true, I rarely put on makeup, how could I be using 12 products a day. Then I did the math: Body Soap Face wash Shampoo Conditioner Toothpaste Mouthwash Body lotion Face Moisturizer Hair Gel The occasional nail polish Chap stick Depending on what's going on that day, perhaps some concealer (#12), eyeliner (#13), and (mascara #14). Rush out the door with coffee and hand, and oh wait, cannot forget #15, Hand Sanitizer! The Importance of Skin Our skin is our largest organ. What we put on our face and scalp can penetrate into the deeper levels of our skin and be absorbed into our bloodstream. There is some truth in knowing that what we scrub, lather, spray and pencil onto our faces and hair can enter directly into our bodies. Let’s think about it. If we are using Cold Caps to limit the exposure of our hair follicles to toxic chemotherapy drugs, what chemicals are we messaging onto our scalp daily that are seeping into our pores? A quick point of clarification: pores and follicles are terms people used interchangeably and rightly so, your pores are actually tiny hair follicles! Think of your pores as a chimney stack, the gateway between your deeper layers of skin and the outside world. Your hair follicle is what comes to the surface, our bodies are covered with millions of these tiny follicles! Think of them as the smoke that comes out from the chimney! So what exactly are we putting on our skin? And what is "clean beauty"? In many countries, cosmetics ingredients must be assessed for safety before entering the marketplace. Those determined to be harmful are highly restricted. Unfortunately, this level of oversight does not exist in the U.S. (FDA) thus cosmetic companies are allowed to prey on the unwitting U.S consumer. I find this to be unethical and dangerous! For example, in Canada, they have regulated 600+ chemicals from their beauty products and the EU has banned 1500. Where does the U.S. stand? The US has banned under 40 products and one assumption could be the US’s favoritism towards companies and manufactures over the consumer. Tiffany from Follain mentions, “ The industry has been left to regulate itself and there hasn’t been a push or enough advocacy to more highly regulate this.” I am not saying you must immediately toss out all of your makeup products, shampoos and cleansers (Although William did just that to me, and I still haven't forgiven him!) but I would argue that we should make the transition to conscious beauty. If we want to be healthy and we are adding more fruits and vegetables to our diet, reducing and eliminating smoking and levels of alcohol and exercising regularly, then let’s also start to make the shift in terms of how we are taking care of our outer layers! Toxic Cosmetic Ingredients to Avoid Many toxic ingredients are permitted in the US as cosmetic ingredients. Look out for the following ingredients when searching for cosmetics and self-care products: Parabens & Long Chain Parabens like propyl paraben and butyl paraben Phthalates Ethylene oxide ( Formaldehyde) Diazolidinyl Urea DMDM Hydantoin Imidazolidinyl urea Quaternium-15 Tosylamide/Formaldehyde Resin Sodium hydroxymethylglycinate 2-bromo-2-nitropropane-1,3-diol (bronopol) Polyoxymethylene Urea 5-Bromo-5-Nitro-1,3 Dioxane Methenamine Glyoxal Benzylhemiformal Aluminum compounds Fragrance Phenoxyethanol PEG Compounds Sodium Lauryl Sulfate & Sodium Laureth Sulfate (SLS & SLES) Check out our Podcast where we speak with three beauty conscious women about how we can start making the switch to with simple and actionable choices! You may also be interested in other articles we wrote about on this topic! Going Green with your Clean Routine 5 Toxic Ingredients to Void

Precision medicine, according to the National Research Council, focuses “on identifying which approaches will be effective for which patients based on genetic, environmental, and lifestyle factors.” Once doctors have this important information regarding your tumor and genetics, they can make informed recommendations related to your diagnosis and treatment plan. A breast cancer diagnosis unites us, and it provides a common thread as we share stories about treatments, surgeries, and coping mechanisms. Within breast cancer circles, however, we quickly jump to questions about one’s HER2 status, hormone receptor status, or whether or not we opted for genetic testing. We have the ability to rattle off pharmaceutical and generic name drugs, which aromatase inhibitor we are on, and the bond we innately forge when we meet someone else who is also Triple Negative, or BRCA Positive. (Watch the Webinar) We have these conversations with our breast cancer besties, and we start to identify our “breast cancer twin”. That is to say, someone else diagnosed around the same age, with the same stage and type of breast cancer. However, if we have found our breast cancer twin, then why do we have different side effects? Why would my cancer twin have a complete response to neo-adjuvant chemotherapy (receiving chemotherapy prior to surgery), whereas I did not? Why did my cancer come back (recurrence) 4 years later, and hers did not? How Precision Medicine Provides Answers Precision medicine enables us to answer some of these tough questions and to identify specific treatment options based on our tumor characteristics. For example, if you have tested positive for the HER2 gene, oncologists recognize that this particular gene causes the cancer to grow and spread faster than if you tested negative for HER2. If you do have HER2+ breast cancer, the good news is that there are targeted therapies, such as Herceptin, that work to slow or even stop the growth of the cancer cells by blocking any signals trying to get to the HER2 protein. Because of precision medicine, researchers have been able to develop targeted therapies to benefit those diagnosed with HER2+ breast cancer. Precision medicine can improve disease detection and preempt disease progression. It also places emphasis on prevention rather than just serving as a reaction to a particular disease. Concisely, precision medicine is an attractive option as it can help us to better understand cancer, Alzheimer’s, diabetes, and many other illnesses that plague us. DNA is the Key to Advancement Technological advances have enabled researchers and scientists to decode DNA at lightning speed. If we can decode our genes, understand what secrets they hold, and harness that information to target, treat, and prevent disease, we are literally holding the golden ticket. In 2015, under then-President Barack Obama, the National Institute of Health (NIH) launched a national, patient-powered research initiative seeking one million or more Americans to volunteer as participants in research. In order to understand the human genome and the onset of disease, scientists and researchers will need a substantial and very diverse sample size. This is a heroic opportunity for people to get involved in the advancement of medicine. However, it is easier said than done. There is currently a lack of trust in Science and Medicine. Smirnoff, Willets, and their team (2018) identified a framework for understanding specific areas of research trust/mistrust amongst disparate study populations. In their published paper, A paradigm for understanding trust and mistrust in Medical Research: The Community VOICES Study , the scholars laid out four pillars that offer a conceptual framework in order to strengthen truths and increase broader participation in clinical research. The areas are: General Trustworthiness (Older age, not disabled) Perceptions of Discrimination (African American, Latino, Spanish Language Preference) Perceptions of Deception (prior research experience, African American) Perceptions of Exploitation (less education) Despite federal mandates to ensure the inclusion of women and minorities in federally funded research, there continues to be additional barriers to participation, including “logistical problems, low levels of health literacy, and sociocultural factors” (Scharff, Mathews, Jackson, Hoffsuemmer, Martin & Edwards, 2010). Issues with Past Studies If we take a look at the Tuskegee Study , why wouldn’t one be skeptical? The Tuskegee Study was a 40-year experiment run by Public Health Service Offices who followed 600 rural black men in Alabama with syphilis over the course of their lives, refusing to tell them of their diagnosis, refusing to treat them, and denying them treatment. The U.S. has a long-rooted history ingrained in our system and structures, but we need to overcome this. We can do better. As a result of the horrific experiment of the Tuskegee Study, policies and legislation were formed to protect human subjects. For example, researchers need to obtain voluntary informed consent and have their research reviewed and approved by institutional review boards to ensure that ethical standards are met. To begin, we need to recognize that precision medicine does have its perils. While we’ve been focusing on the advantages, such as unlocking the information hidden within our DNA, we as a society need to do better to ensure we are including all of the players and inviting them to the table. There are ethical considerations that must be explored before we hand over our genetic information for research. For example, what are the legal ramifications of sharing your DNA? Who owns the data? Can an employer or life insurance company discriminate against you based on your genetic information? How can we get it right? We have an opportunity to rebuild trust, to improve clinical trial participation, and to support research; this initiative is bigger than any individual, it is the sum of one million data points to ensure that our sons, daughters, and their children have access to the best medicine and preventative care in years to come. References: Smirnoff, M., Wilets, I., Ragin, D. F., Adams, R., Holohan, J., Rhodes, R., Winkel, G., Ricci, E. M., Clesca, C., & Richardson, L. D. (2018). A paradigm for understanding trust and mistrust in medical research: The Community VOICES study. AJOB empirical bioethics , 9 (1), 39–47. https://doi.org/10.1080/23294515.2018.1432718 Scharff, D. P., Mathews, K. J., Jackson, P., Hoffsuemmer, J., Martin, E., & Edwards, D. (2010). More than Tuskegee: understanding mistrust about research participation. Journal of health care for the poor and underserved , 21 (3), 879–897. https://doi.org/10.1353/hpu.0.0323

Clinical trials are research studies involving people that help inform medical practice, answer specific questions regarding biomedical remediation, and test the efficacy of specific treatments and drugs. The US breast cancer drug market alone is projected to become a $20 billion industry by 2026, with 350 drugs currently in the pipeline, according to the latest report from Research and Markets[1]. With so many new drugs being studied, there is great expectation to be able to extend a patient’s life and potentially find a cure for breast cancer. With so many breast cancer drugs in the queue, would you be willing to participate in an upcoming clinical trial? Before we address that very personal question, let’s take a step back to understand what a clinical trial actually is. What is a Clinical Trial As mentioned above, clinical trials are research studies that involve people and help to inform medical practice. Clinical trials are divided into four phases, which build upon each other and each answer a specific research question in order to identify ways to prevent, screen, or treat a disease. Some clinical trials are also comparative and evaluate the benefits and efficacy of current treatments compared to new potential therapies. Phase I studies usually test new drugs for the first time in a group of 10 or fewer to evaluate a safe dosage range, how to administer the drug (i.e., oral, intravenous, etc.), and identify side effects. Phase II studies continue to evaluate the safety and expand a larger group of human subjects to monitor side effects. During this phase, the drug is rarely compared to treatments that are considered to be the standard of care. The goal of this phase is to monitor the participants to see if the drug works. If so, it will progress to phase III. Phase III studies are conducted on larger populations, typically involving 100 or more people and in different regions and countries. They are often the necessary phase needed before the drug is approved. Phase IV studies take place after country approval and there is a need for further testing in a wide population over a longer timeframe. Participating in a Clinical Trial While the goal of clinical trials is to reflect a diverse population, data show that Black/African Americans make up 5% of trial participants, with Hispanic/Latinos representing less than 1%[2]. This lack of representation in clinical trials results in drugs being approved and widely administered, which may not be as efficacious among different populations. These clinical trials are carefully designed, reviewed, and completed, and need to be approved before they can start. It is important to know that participating in a clinical trial is voluntary and 100% at one’s own will. What are the Benefits of Participating in a Clinical Trial Though they are experimental by nature, clinical trials can offer several benefits to participants, including: The opportunity to play an active role in your own healthcare Access to an expert team that can give you a deeper understanding of your condition Access to new research or investigational medications before they are widely available Additional care/tests specific to the trial The knowledge that you’re helping others Your quality of health and life may improve Learn More This is just scratching the surface of clinical trials. Join us for a livestream webinar where we speak with the experts and those diagnosed with breast cancer to learn more and hear about their experiences participating in trials. References [1] https://www.globenewswire.com/news-release/2021/01/21/2162347/0/en/US-Breast-Cancer-Drug-Market-Report-2021-2026-Drug-Price-Dosage-Clinical-Trials-Insights-20-Billion-Opportunity.html [2] https://acrpnet.org/2020/08/10/representation-in-clinical-trials-a-review-on-reaching-underrepresented-populations-in-research/

Breasts are made up of Fibrous Tissue, Glandular Tissue, and Fatty Tissue . During a mammography screening, a radiologist will be able to determine if your tissue is mostly made up of: Fat (about 10% in women) Scattered dense tissue throughout the breast (about 40% in women) Evenly dense tissue throughout the breast (about 40% in women) Extremely dense tissue, which makes up the remaining 10%. A first important note: Fully 40% of women age 40 and over have dense breasts, and cancer is 4-6 times more likely in women with extremely dense breasts than in women with fatty breasts. A second important note: It is a misconception to assume you have dense tissue because your breasts are firm. However, you cannot gauge breast density by look and feel. Breast density can only be seen/detected via mammograms. Why Breast Density Matters Knowing your breast density matters because the fibrous tissue in your breast appears white on a mammogram screening. Similarly, breast cancer appears white on a mammogram! While mammograms may find some cancers not seen on other screening tests, in cases involving dense breast tissue, mammograms will miss more than 50% of the cancers present. Thus, the short and sweet version: If you are looking for a white spot on a white sheet of paper, chances are you will never find the spot, no matter how good your vision is! In 2019, Congress passed a National Breast Density Notification Law. (Prior to that, 38 states and the District of Columbia separately legislated some form of notification). This new law established national minimum standards to include fibroglandular breast density information on mammography reports. If you are informed that you have dense breast tissue, you should discuss with your provider to ascertain whether additional screening is recommended. Recently, in a webinar we hosted on breast density with Leslie Ferris Yerger from My Density Matters , we discussed the need to encourage these types of conversations between patients and their physicians. It may be recommended that you have an ultrasound, an MRI, or even consider additional screening modalities such as Molecular Breast Imaging or a 3D mammogram. At survivingbreastcancer.org , we are always in favor of self-empowerment and self-advocacy. In case you missed our webinar, you can view it here .

Physician (and Nurse) Burnout has been officially recognized for years and poses a significant existential threat to the safety of medical personnel and the treatment success of patients across the spectrum. Death by suicide in the medical profession has now reached approximately 400 annually just in the United States[1]. According to the Medscape Physician Lifestyle Report, nearly “half of all physicians experience burnout, with emergency care, critical care, and family medicine experiencing the highest rates”.[2] Burnout During COVID-19 The onset of COVID-19 has certainly exacerbated this phenomenon. However, burnout was quite real, with 79% of physicians reporting burnout prior to the pandemic.[3] There are many contributing factors, such as excessive paperwork and computer time associated with the practice, but there are many other drivers and influencing facets. The latter includes perfectionism re: personality traits, excessive expectations, and fears, including failure, loss of control, and exposure. These last issues are associated with internal forces, but there are many external pressures as well. In no particular order would be the long hours, demands of seeing more patients in a shorter amount of time, network frustrations, too many bureaucratic tasks, difficult/unrealistic patients, and work-life balance. There can be severe consequences associated with physician burnout: physical decline, relationship issues, addiction, anxiety, depression, and the above-referenced suicide. In addition, patient quality of care may be adversely affected, including medical errors, prescription issuance, and overall patient satisfaction. The danger signs of physician burnout include negativity, exhaustion, illness, and the development of poor habits. Physician Burnout Intervention There are a number of ways for medical personnel to combat burnout, and they are similar to caregiver relief. For example, taking care of yourself being foremost, consider the final safety advice an airline stewardess gives regarding the use and implementation of the O2 masks if necessary: “Be sure to place yours on first, then place one on your child, loved one or neighbor that needs assistance.” Proper nutrition and exercise also play a significant role in stemming the tide of burnout. Lastly, make time for yourself (here I recall a close friend calling me out in my role of cancer caregiver, to make sure that I was finding the time to walk, rest, & exercise by myself. She always maintained that I was more valuable as a caregiver when I could find the time to unwind. According to the Agency for Healthcare Research and Quality (AHRQ), Dr. Mark Linzer developed a mini survey to allow physicians to check in on their stress and burnout levels. From his research, Dr. Linzer identified three interventions that could help to alleviate physician burnout: Scheduling monthly provider meetings focused on work-life issues or clinical topics after surveying staff members on which topics to address. Enhancing team functioning through diabetes and depression screening quality improvement projects to engage office staff, enhance teamwork, and reduce the pressure on physicians to be responsible for all aspects of care. Having medical assistants enter patient data into electronic health records, track forms, and send faxes to give doctors more face-to-face time with patients.[4] The final advice we recommend for defeating burnout is to laugh. Find yourself a comedy on Netflix, take your shoes off, sit back, and smile. Laughing may just be the greatest antidote to burnout. So for your next appointment, when your doctors are asking if you have fallen recently, or if there are any changes to your medication list, be sure to take a moment to ask your doctor how they are doing, when was the last time they laughed so hard their belly hurt, and what they are grateful for today. We are partners and in this together. References [1] Andrew, L.A., (2018), Physician Suicide, Medscape , https://emedicine.medscape.com/article/806779-overview [2] Martin, K. L., (2020). Physician Lifestyle & Happiness Report 2020: The Generational Divide, Medscape https://www.medscape.com/slideshow/2020-lifestyle-happiness-6012424#1 [3] Kane, L., (2021). Death by 1000 Cuts': Medscape National Physician Burnout & Suicide Report 2021, Medscape. https://www.medscape.com/slideshow/2021-lifestyle-burnout-6013456#4 [4] Physician Burnout, (2017). https://www.ahrq.gov/prevention/clinician/ahrq-works/burnout/index.html

Dating. It can be fun. It can be confusing and frustrating. It can be stressful. Navigating the dating world with breast cancer takes it to another level. Dealing with breast cancer is daunting enough without the added stress of dating. To endure chemotherapy and radiation, losing their hair, eyebrows, eyelashes, or, for some women, a double mastectomy, and then trying to maneuver the dating world is not for the weak. Just the thought of dating when you’re going through breast cancer or after can be scary. It can leave you feeling insecure and uninterested. Understandably, lots of questions and concerns might occupy your mind. For example, when is the right time to mention it to a date? Would people see me as weak? Will I ever feel confident again? How you handle dating with breast cancer depends on each individual. We’re all different, so it makes sense that our responses may be different. Here are a few things to consider about dating with breast cancer: Dealing with Your Emotions Being diagnosed with breast cancer can and does bring about a tsunami of emotions. If you want to start dating but feel paralyzed, it may be that the thought of dating may reawaken or increase emotional responses you had at diagnosis or treatment. You may experience anxiety or depression, which can cause you to focus on or magnify negative thoughts about your prospects for dating now or in the future. Your reluctance could also be due to low energy, fatigue, or fear of rejection. It might be especially difficult to jump into the dating world if you isolated yourself during treatment. But there are a few things you can try to combat these feelings: Take small steps, and stay focused on today. The fear of rejection may be complicated due to your breast cancer, but it’s a common emotion for anyone dating. Look for opportunities to meet people in low-pressure social settings, such as at a friend’s party or a community event. Join a group focused on activities that you enjoy, where you may find people with similar interests. Improve your energy, lessen fatigue, and treat anxiety/depression by taking regular exercise. Talk with an oncology social worker, psychologist, or counselor for help with your emotions. Putting Yourself Out There Let close friends and acquaintances know that you want to start dating and ask if they know anyone they think would be a good prospect. Pursue activities and volunteer opportunities where you might find people with similar interests. Consider using an online dating site. Sites such as CancerMatch connect people with health conditions, making your entry into the dating world a bit easier. Talking About Breast Cancer with Dates A big worry for many women is how a date will react to hearing about their experience with breast cancer and seeing any physical changes caused by treatment. Timing is everything. Each situation will differ, depending on who you’re dating and how you feel. Some women think it’s best to rip the proverbial band-aid off right away; others prefer to get comfortable with a person before spilling the beans. It’s up to you. There’s no rush to tell everything about your life right away, including your diagnosis! Sharing very personal information when you’re new to each other might make you both uncomfortable. There’s no “right time,” but many women wait until they’ve had a few dates to see how they feel about the other person. However, if you’ve chronicled your experience online, for example, on Facebook or Twitter, realize that your date may have looked you up and read about it. In that case, you probably don’t want them to feel as though you’re withholding information. Trust your judgment about when it feels right to you. Try to have the conversation before you’re about to become sexually intimate. Choose a neutral place and a relaxed time to talk, where you both feel at ease. Say as much or as little as you want. There’s no “right answer,” just the right answer for you. Some women create one sentence to explain their diagnosis. Practice what you want to say in front of a mirror or with a friend. Recognize that your date may have questions about your experience or your treatment. Body Image & Confidence Breast cancer therapies and procedures can affect your body and your feelings about it. Surgery , reconstruction, lymphedema , hair loss , skin changes, weight gain, and infertility can alter your self-image and enthusiasm for dating. Here are some tips that may help you recapture positive feelings about your body: Take care of yourself with comforts such as skin lotions, a new hairstyle, or head covering, or makeup. Talk with your healthcare provider about ways to help with physical effects and learn what physical changes are temporary and which are permanent. Get to know how your body looks and feels now When your thoughts become critical of your body, remind yourself of your strength and your resilience. Indulge in positive thinking . Reconnect with your body through exercise . Although breast cancer will most likely always be a part of you, it should not define you. You are much more than a cancer patient, and anyone you choose to be intimate with should accept you for you. The reality is that scars, stretch marks, birthmarks, and other unique features help define us and make each of us imperfectly perfect. By being open, you’re conveying your confidence not just to your potential partner, but also to yourself. You got this!

By JoAnna Brown of Near. Near offers end-of-life navigation and grief support for patients, families, and caregivers. End of life is something nobody wants to talk about, because let’s be honest, no one wants to experience it. Whether you’re the patient or the caregiver, the end-of-life transition can be chaotic and complicated, filled with big and constantly changing emotions. In addition to the fear, uncertainty, exhaustion, and grief, there’s also a mountain of logistics to work through, from advance care planning to after-death preparation. All the medical, legal, and financial tasks can feel intimidating and overwhelming. The mental and emotional toll is highest, just as personal bandwidth is low. This is where seeking the services of an end-of-life navigator can make all the difference. These experienced, compassionate guides help replace overwhelm with clarity and confusion with comfort. Navigators come alongside patients, families, and caregivers as they figure out all the planning, logistics, and next steps of the dying process. Whether you choose to work with a Navigator or a trusted friend or family member, here are some things to think about as you create and carry out your end-of-life plans. Cast a Vision There are important conversations that need to take place at the end of life. These discussions give the person dying an opportunity to honestly and directly communicate their vision and desires for their final days and beyond. As hard and painful as they may be, vision conversations can help you and your loved ones approach death with love and meaning instead of fear and anxiety. Make a Clear Advance Care Plan Advance care planning involves making decisions about the care you want to receive in the event of a medical crisis. Each individual should make these decisions based on their own personal values, preferences, and candid discussions with loved ones. Make a Clear After-Death Care Plan When it comes to planning out what will happen after death, it’s important to once again ensure that the individual’s wishes align with their goals and values, and that they are communicated clearly to all parties involved. This gives loved ones the gift of a clear plan in the midst of their grief, and simplifies the overwhelming logistical and legal tasks that come along with the end of life. Leave a Lasting Legacy What do you want to leave behind for future generations? If you can, put some time and intention into creating an expression of love, remembrance, or inspiration for the people you love for years to come. Some examples include milestone notes, letters to children or loved ones, life interviews, audio or video recordings, photo projects, slideshows, cookbooks, letters to the future, or a work of art. Legacies convey what we want remaining and future generations to know and understand about our life experiences. Don’t Neglect the Details In addition to grief, most family members and caretakers are left to figure out passwords, hunt down insurance policies, and search for important paperwork when their loved one passes. Once again, you can give your loved ones an amazing gift by creating a Life Details Folder, compiling important information in one place, removing all the guesswork, and reducing overwhelm and stress. Reach Out For Grief Support Before and After Loss Facing loss at each stage gives patients and caregivers a chance to heal and find meaning. Grief and loss play a role in our experience long before someone we love dies, and by addressing loss along the way (loss of identity due to illness, a job, relationship roles, health, mobility, assumptions about the future, etc.), we can heal, experience deeper relationships, and ultimately have a more meaningful life. About Near Near provides personalized, one-on-one end-of-life navigation for patients and caregivers. After a free meeting with a member of their Care Team, you can select a customized plan to make your end-of-life experience less stressful and more meaningful so you can live your life well, even as it’s ending. Near’s Care Plans include one-on-one support that includes everything from advance directives, health care POA/proxy, vigil planning, and weekly check-in meetings with your Navigator. They help you with all the details, offering extra support and guidance, so you can focus on what matters most. To learn more about End of Life Navigation services, visit StayNear.co & be sure to follow them at @staynearco on FB, IG, and Twitter

We’ve Come So Far, But Still Have Far To Go! By Dr. Paula Gordon The breast density movement in the US started in 2004 with Dr. Nancy Capello. As of early 2021, 37 states and the District of Columbia have legislation requiring women to receive some information about breast density. And soon, ALL women in the USA will be informed. Kathy Kaufield of Saint John found her breast cancer by chance. While on a business trip in 2015, she didn’t have the shower puff she regularly used in the shower at home. When her soapy hand grazed the underside of her left breast, she felt a lump. She thought it couldn’t be cancer. After all, she just had a negative mammogram five months earlier. Kathy didn’t know she had dense breasts, and she didn’t know the implications of dense breasts. She wasn’t aware that she shouldn’t trust her mammogram as much as she had. Unfortunately, like many women, she didn’t know she should have been more vigilant with her monthly breast self-exams. Following surgery, 16 rounds of chemotherapy, and six weeks of radiation, Kathy became an advocate for breast density notification. She joined other patient advocates, including Dense Breasts Canada, and since its beginnings in 2016, women in Kathy’s province of New Brunswick and 5 other provinces in Canada are now notified of their breast density in their screening mammogram results letter. What is Breast Density? Every woman’s breasts are composed of fat and breast tissue, but the proportions vary. There are four categories of breast density. Categories C and D are considered “dense.” Dense breasts are normal. Over 40 per cent of women aged 40+ have dense breasts. Approximately 40 per cent of women have heterogeneously dense breasts (Category C) while 10 per cent have extremely dense breasts (Category D). Breast density is determined only on a mammogram. It cannot be determined through physical examination. Most commonly, breast density is determined by a radiologist when they look at the mammogram. Software that can determine density is being incorporated into mammography equipment, but it is not yet widely used in Canada. Why Does Breast Density Matter? Dense breasts reduce the accuracy of a mammogram. A missed diagnosis like Kathy’s is more likely with dense breasts because dense breast tissue and cancer both appear white on mammograms, so cancer can be masked. Mammograms are 92-100 per cent effective in fatty breasts but only 50 per cent effective in the highest density. Dense breasts are an independent risk factor for breast cancer. The denser the breasts, the higher the risk. Cancer occurs four to six times more often in women with the highest level of density than in women with the lowest level. Breast density is a more prevalent risk factor than family history. Dense breasts result in higher rates of interval cancers. As seen in Kathy’s case, women with dense breasts may find a lump after a negative mammogram. These are called “Interval cancers” and are 18 times more common in women with dense breasts. Interval cancers are larger at diagnosis and more often node-positive and more aggressive subtypes. They are more likely to need more aggressive treatment and are more likely to require mastectomy, axillary dissection, and chemotherapy. They have a poorer prognosis compared to screen-detected cancers. What Should Physicians Discuss with Women Who Have Dense Breasts Any other risk factors the patient may have, breast density should be placed in context with other risk factors and risk reduction strategies The importance of having regular mammograms and the consideration of annual mammograms for Categories C and D The importance of regular self-exams Modification (improving) of lifestyle behaviors: maintaining a healthy weight, increasing exercise, decreasing alcohol intake, and avoiding/decreasing hormone use. Evidence of Benefits of Supplemental Screening for Women with Dense Breasts Mammography is the only screening test proven to reduce deaths due to breast cancer because it is the only modality studied in an RCT. The key to mortality reduction by screening is finding cancers smaller, and before they have spread to the lymph nodes, and reducing the incidence of advanced cancers. It has been known since 1995 that ultrasound can find cancers in dense breasts that were missed on mammograms. Subsequent research from multiple institutions confirms that ultrasound can find 3-4 cancers per 1,000 women screened. An RCT of supplementary ultrasound screening is underway in Japan and is showing greater cancer detection and reduced interval cancers. The Canadian Association of Radiologists’ position paper states, “supplemental screening breast ultrasound may be considered for patients with dense breast tissue (C & D density categories),” and annual mammography is suggested for all women with extremely dense breast tissue (Category D). False alarms occur with screening ultrasound, just as with mammograms and pap smears. These, understandably cause anxiety. Most women are willing to accept the transient stress associated with a recall or even a needle biopsy in exchange for avoiding an advanced cancer diagnosis. Physicians have a key role to play by considering breast density in context of other risk factors, assessing a woman’s overall risk, identifying higher-than-average risk patients who need increased surveillance (i.e. Ultrasound and MRI), discussing supplemental screening benefits and harms, and encouraging women to do regular breast self-examination and reduce their modifiable risk factors. An excellent reference of medically sourced information is www.densebreast-info.org . So what’s next: There are another 4 provinces and 3 territories yet to give breast density information directly to women. Supplemental screening should be covered by public health insurance, just like mammography. All women in Canada should be able to access screening mammography starting at age 40. Currently, only 3 provinces’ mammography screening programs allow women to self-refer starting at 40. We Have Our Work Cut Out For Us! Dr. Paula Gordon is a clinical professor in the Department of Radiology at the University of British Columbia. She is a volunteer advisor to both Dense Breasts Canada, a Canadian patient advocacy group, and Dense Breast Info, an American educational website. In recognition of her research and teaching, she has been awarded the Order of British Columbia. Jennie Dale is a breast cancer survivor, and co-founder of Dense Breasts Canada.

There have been, and continue to be, numerous studies that attempt to link the consumption of sugar to breast and other cancer(s). These myriad studies have investigated whether sugar ingestion contributes to breast cancer or further stimulates its growth. So, the question of whether or not sugar contributes to or feeds breast cancer cells remains unresolved at this time. Watch Now Sugar's Role in the Body Physiologically speaking, our cells need energy to develop and survive. Similarly, so do cancer cells, which typically grow fast and therefore require even more energy to do so. But, where does all this energy come from? Our bodies’ energy comes from several sources, including glucose, which is found in sugary foods in our diet, but especially from foods containing carbohydrates that are converted into glucose. Glucose is a simple sugar or monosaccharide, is a component found in many carbohydrates, and remains our body’s favorite energy source. Note: Scientifically speaking, sugars are categorized as monosaccharides or disaccharides. Disaccharides are made up of two linked monosaccharides (simple sugars), which are then broken back down into the latter during digestion. Types of Sugar and Where They Come From Is glucose good or bad for you? What about fructose, sucrose, dextrose, etc.? Fructose is known as the fruit sugar, and like glucose, is a simple sugar. Fructose is naturally found in fruit and most root vegetables. However, fructose is commonly added to processed foods in the form of high-fructose corn syrup, which is derived from sugar cane, sugar beets, and corn. Sucrose (more commonly known as table sugar) is a disaccharide consisting of glucose and fructose. It’s a naturally occurring carbohydrate found in many fruits, vegetables, and grains, but it’s also added to many processed foods, such as candy, ice cream, breakfast cereals, canned foods, soda, etc. Sucrose found in processed foods is commonly derived from sugar cane or sugar beets. Glucose, fructose, and sucrose are found naturally in many foods but are also added to processed foods. However, they are digested and absorbed differently (i.e., our bodies digest and absorb monosaccharides and disaccharides differently). As mentioned, monosaccharides are already in their simplest form; therefore, they don’t need to be broken down before our bodies can use them. They’re absorbed directly into our bloodstream, primarily through the small intestine. On the other hand, disaccharides like sucrose must be broken down into simple sugars before they can be absorbed. Does Sugar Increase Breast Cancer Risk? According to a recent study by The University of Texas MD Anderson Cancer Center, Rolaynne Kimmons posits, “High amounts of dietary sugar in the typical Western diet may increase the risk of breast cancer and metastasis to the lungs.” Another study looked at the “intersection of obesity, cardiovascular disease, and breast cancer,” while Megan Rosessler from the Mayo Clinic suggests that "sugar seems to be a major source of anxiety and fear for people with cancer. There is a myth circulating that sugar feeds cancer and that avoiding sugar will prevent the growth of cancer. To set things straight, sugar does not cause cancer on its own. Giving sugar to cancer cells does not make them grow faster, and depriving cancer cells of sugar does not make them grow more slowly. However, sugar may be indirectly involved in the development of cancer.” These and other studies make it seem possible that if you had no sugar in your diet, it could help stop cancer from developing or growing. But all our other cells also need glucose to survive, and there’s no way of letting just the healthy cells get the amount of glucose they need while starving the cancer cells. What You Can Do to Decrease Your Risk Perhaps the most important prescription for cancer patients is to limit the amount of sugar in their diet, read ingredient labels, enjoy simple, unprocessed foods, and follow the advice of your nutritionist/oncology team to focus on getting the nutrients they need to stay strong during and after treatment. In short, eat the healthy sugars found in fruits and veggies while shying away from the cookies, cakes, and processed cereals. While the possible link between sugar and cancer is often discussed, the research so far has not shown evidence of a direct link, but that research continues.