What do 1000 people this past weekend all have in common? CANCER. Cancer unites us, but the Weekend of Hope ignites us. This past weekend, 1000 people gathered in the Green Mountains of Vermont to retreat, inspire, learn, laugh, and feel a common connection and bond. Living daily busy lives, managing work, children, and running errands, forces many to throw on their wig, a smile, and muster up the energy to go out into society. When someone asks how you are doing, the reply is a cordial “I am fine”, followed by a silly excuse to exit the uncomfortable situation as quickly as possible. This weekend, to those pointed and difficult moments, SurvivingBreastCancer.org ’s response was: “But aren’t we all just fine”…..People stopping in their tracks to share every detail, every blistering moment of the experience, the heartfelt agony that accompanies a cancer diagnosis. A woman who was not diagnosed under the unifying umbrella of cancer came to the conference as a caregiver. She was broken. You could see it in her stance as she leaned in; she knew she had come to the right place. She needed empathy, compassion, and support from a caregiving community. Survivingbreastcancer.org was exhibiting at the Weekend of Hope. As people flooded the exhibit booth, Laura, founder and executive director, alongside William, caregiver and board member, asked the pointed questions, “how are you”; “how far out are you” referencing the time someone was last in active treatment, or first diagnosed. When asked, “What’s going on these days,” it is followed by the swelling of tears because the person answering can finally respond to the question in full honesty, acceptance, and unbiased judgment. The natural response always comes out first, because of course, strangers want to put their best foot forward: “I’m doing fine”. Followed by that awkward smile… But they don’t walk away. There’s that stagnant pause just hoping for the silent lifeline, that acknowledgment, and that permission to tell the listener what’s really going on. Words like Trastuzumab or Pertuzumab, T-DM1, and CDK4 & 6 inhibitors are not part of a foreign language, but rather, are the language. This is a community. This is support. This is Survivingbreastcancer.org ’s experience at the Weekend of Hope. Welcome to the community. Xo, Laura

By Madhumitha Sabhanyagam & Laura Carfang Genetic testing. Two words that you have probably heard a lot over your breast cancer survivor’s journey. What exactly is it, and how does it concern you? Why is it important that you get tested, and why are there conflicting conversations surrounding the topic? These were some of the questions I had walking into the podcast interview with Fatima Amir, a Genetic Counselor at Dana Farber. (Make sure to catch the really informative podcast with Fatima on our website and subscribe to Breast Cancer Conversations wherever you get your podcasts!) The study of genetics or the first genetic screening, began in the 1930s. Since then, the constant evolution of medical technologies has made genetic testing quite accessible and much more accurate. Genetic testing is a type of medical test that identifies changes in chromosomes, genes, or proteins. Genetic testing in adults and children usually involves taking a sample of blood from a vein or tissue. They are all designed to identify a particular gene that may cause a genetic disorder. There are various forms of testing, and these tests can be conducted in different stages of your life and for different diseases. So, how does genetic testing concern you? If you have been diagnosed with breast cancer, genetic testing can help you understand if there is a history of breast cancer in the family and if there is a possibility of other family members inheriting a genetic mutation predisposing you to cancer. If you do not have breast cancer, genetic testing can help inform you of your own cancer risk. With this knowledge, you can decide to take the action that is best suited for you. Prophylactic Double Mastectomy The spotlight on genetic screening for breast cancer was cast when Angelina Jolie publicly shared her experience of being genetically tested positive for the BRCA1, which sharply increased her risk of developing breast cancer and ovarian cancer. She then decided to get a preventive double mastectomy procedure. Since then, more women have opted to get tested, to know their treatment and preventive options, usually opting for a prophylactic double mastectomy. Breast Cancer Genes List The more information you have when considering breast cancer genetic testing, the better. Most inherited cases of breast cancer can be traced to the mutations in two genes: the BRCA1 (Breast Cancer Gene 1) and the BRCA2 (Breast Cancer Gene two). There are also some high-risk gene mutations that have been linked to breast cancer. These include the PALB2 (partner and localizer of BRCA2) gene, the PTEN gene, and the TP53 gene. There are two additional gene mutations that pose a high to moderate risk: ATM and CDH1. The ATM gene helps repair damaged DNA, while the CDH1 gene helps cells bind together to form tissue. Additional testing may be ordered by your genetic counselor for: BARD1, BRIP1, CHEK2, NBN, NF1, RAD51D, RAD51C, STK11, MLH1, MSH2, EPCAM, or PMS2 genes. Choosing or Not Choosing Genetic Testing Like any hard decision that we have to consider, there are two sides to this difficult choice as well. Testing can be overwhelming. There are a plethora of tests that can be carried out. Waiting for the result could cause anxiety and undue stress. Sometimes the tests may not even give you a conclusive answer. For example, one of my genes came back with what is termed a "variant of unknown significance", meaning that there is not enough data at this time to conclusively say if the gene is positive or negative. In this case, genes that come back inconclusive are treated as if they were negative, and my treatment plan and surgical decisions reflected that. Breast Cancer Genetic Testing Cost Genetic testing is not cheap, and while procedures to undergo genetic testing only require a blood test, the decision is not easy. For those with insurance, genetic testing could range anywhere from $300 to $5000. This wide range is largely dependent on what type of testing you are having and whether you are testing only one gene or multiple genes. Although the price can be steep, there are several genetic labs that do offer financial assistance for those who qualify. Ethical Considerations Ethical complications of asking a family member to undergo the screening with you are also substantial. Family members could be unwilling to take the test or undergo the test and not be able to cope with unexpected results, causing tension within the family dynamic. To some, negligence is bliss, and we have to respect their decisions all the same way. Is Genetic Testing Worth It? Undergoing genetic testing has its benefits as well. You would likely hood of getting cancer. True, it is not a certain fate, but it does give you the knowledge to help you get prepared. One of the benefits of genetic screening is the fact that early detection of any type of disease or disorder is usually much less expensive when it comes to the treatment of that disease. Genetic screening also helps people who know a heritable disease runs in their family. We are not just talking about breast cancer either! You can be screened for up to a panel of 80+ genes! This means, for example, if you know that you may have a predisposition to colon cancer, your doctor may recommend starting screenings at an earlier age. Knowledge is power. But only in the right hands. We also need to bear in mind that the information you receive from genetic testing is presented as an overall lifetime risk. It is critical that you discuss your results with your genetic counselor. We have barely scratched the surface of genetic testing. I am sure you have so many more questions. The right person to answer the questions you have is your genetic counselor! Look up a genetic counselor who best suits your needs and explore your testing options. For more information on genetic testing, click here or tune into our frank and extremely informational podcast interview with Fatima Amir and see some of your questions being answered! Till then, keep thriving, my friends!

By Jasmine Shukla & Laura Carfang What is Pertumuzab? Perjeta (also known as Pertuzumab) is an antibody used mainly in combination with Herceptin and Taxotere and/or Taxol, for treating the metastatic Human Epidermal growth factor receptor 2 (in short, HER2)  positive breast cancer. According to Soleja and Rimawi (2016), 15-20% of breast cancers have an overexpression of the HER2 protein. The antibody has a monoclonal nature, meaning it is composed of exactly similar immune cells that are clones of an individual or a distinctive parent cell. It can also be used in the same amalgamation as a neoadjuvant therapy in early HER2-positive breast cancer.  Perjeta is classified as a cytotoxic ( anti-cancer) chemotherapy drug that functions as an antineoplastic agent, thereby preventing or inhibiting the development of a neoplasm/tumor. HER2 must be responsive to the drug for it to be effective, and to ensure HER2’s responsiveness, four types of tests are conducted before starting to use it for treatment.  Testing for HER2 ImmunoHistoChemistry (IHC) is used to check the amount of HER2 receptor protein present on the cancer cells' surface. Fluorescence In Situ Hybridization (FISH) tests whether the cancer is HER2-positive, giving more accurate results than the IHC, but it is comparatively expensive and takes more time to yield results.  Subtraction Probe Technology Chromogenic In Situ Hybridization (SPoT-Light HER2 CISH) looks for the number of copies present in the tumor cells of HER2 gene present for a single tissue sample of breast cancer and is also simpler than the previous two mentioned. Inform HER2 Dual In Situ Hybridization uses a special kind of stain that can make the protein of HER2 change its color, and can also be used on samples of tissues stored in wax or any other chemicals. It is also less expensive and gives precise results. Cells that spread cancer usually grow in a very uncontrolled manner. The Perjeta drug, on the surface of such cells, blocks the signals of HER2, therefore either slowing down or stopping the growth of breast cancer. Moreover, it alerts the immune system in order to destroy the cells onto which the cancer cells have attached.  Side Effects of Perjeta Even though Perjeta is quite helpful in fighting breast cancer, there are certain side effects related to it. The most common side effects observed in women, due to the use of Perjeta, are a condition of a low white blood cell (WBC) count, which is also known as neutropenia, followed by nausea, fatigue, hair loss, rash, and numbness or tingling or burning in the hands or feet (known as peripheral neuropathy).  Perjeta also may contribute to heart problems, which can be with or without displaying any symptoms, such as reduced heart function or congestive heart failure, respectively; this is one of the most serious side effects of taking this drug.  In addition, taking Perjeta at the time of pregnancy may result in the demise of the unborn child or lead to certain birth defects, which suggests that birth control pills should be taken while undergoing this treatment. Another possible negative impact of Perjeta occurs when the body is allergic to it. In such cases, consequences may be fatal as it quickly spreads throughout the body, affecting many areas.  As Perjeta is injected directly into the vein, it could result in infusion-related fatal reactions. In conclusion, it is dangerous to take Perjeta without proper consultation or even by ignoring the side effects until they aggravate and get serious. Therefore conditions must be thoroughly investigated beforehand, and all patients must experience a variety of blood and body tests prior to injection to verify and test Perjeta’s suitability and necessity.  Interested in learning more? Check out Laura's video, undergoing treatment.

September 28th, 2019, was a monumental date. It was the weekend before the pink explosion of breast cancer awareness month takes over the subsequent 31 days. There was anticipation, excitement, hope, and support, on the brink of ignition, all coming to gather at the Sons of Italy venue in Braintree, MA. Breast Cancer is a disease that affects 1 in 8 women in the U.S. Chances are, you know someone who has been diagnosed. A breast cancer diagnosis is not isolated to just the individual receiving the news; it becomes "we". You see, when someone is diagnosed with breast cancer, life somehow goes up in flames, and you are trying with every bit of strength to put out the fire and smoke that ebbs and flows around you. You have cancer, but life still needs to go on. How often do we say, "Well, I just don't have time for this right now!" But somehow cancer doesn't care. It has come, and it demands attention. We live busy and fulfilling lives, and somehow, cancer tries to take over. We fight back, though, with our secret weapons. We do not let on that we are ill, that we are sick, that we are nauseous. We wear wigs so others do not see our balding heads. When people ask how we are doing, we have the proverbial "I'm fine" response and then talk about the weather. It's either too hot or too cold in New England. It's too humid in the South, or it hasn't rained for weeks in the Southwest. We go on as if nothing has changed when in fact, everything has. We shed tears behind closed doors of our bedrooms and on the floor of our bathrooms so that when we open the door, all they see is our strength, courage, and fearlessness. We Have Cancer While acquaintances may peep into your world and mutter, "I don't know how she does it." We don't request sympathy. What we need is community. We need those friends and acquaintances to come out of the woodwork because this is bigger than any one individual can manage alone. Of course, it is the individual enduring the treatments, the side effects, and the pain, but it is the community that is empathetic, encouraging, a good listener when we need to vent, and a good support system when we are longing for a hug. They become the people we rely on for the small day-to-day tasks that, through our eyes, are mountains and roadblocks. We are grateful for the helping hand, the childcare, the meals, and the strong family and friend bonds that emerge. Collective Trauma Requires Collective Healing What we end up discovering is that our community expands as we meet new people who are experiencing something similar. It is human nature to connect and find commonalities. The breast cancer community is a tight-knit club with unbreakable bonds. We find other breast cancer survivors and warriors with whom we share our stories and perhaps even make jokes because we are in a safe space with people who 'get it'. There is a sigh of relief when we are able to identify another person who is experiencing something similar to us; a connection that triggers solidarity, a feeling of not being alone, of being understood, and someone we can confide in. Community as a Priority It is important, and I dare go so far as to say almost required, that we cultivate this community, this space for support, reflection, and healing. That is why one of the founding pillars of Survivingbreastcancer.org is community, because we know its strength and positive influence on those diagnosed with breast cancer and their caregivers, families, and loved ones. To recognize the outstanding work that organizations, groups, and individuals do to build and support community initiatives within the breast cancer field, we established the Survivingbreastcancer.org Trailblazer Award . This honor is announced each year in the month of October, and it is with great pleasure and gratitude that this inaugural award is presented to Donna Mayo and the exceptional committee behind Paula's Power. Paula's Power was created in memory of Paula Porcaro. Paula died from Breast Cancer in 1985. Her favorite flower was the Daisy. The nine petals on the flower represent her 3 children and 6 grandchildren. In speaking with Paula's children and grandchildren, it is evident that community played an essential role throughout her life. Paula's Power was founded in 2019 and upholds our core values of community and its importance in a breast cancer diagnosis. As men and women paving the way for strengthening community support in light of disease, please join me in congratulating Paula....x.x....x...x....x.. in being the first recipients of the Survivingbreastcancer.org Trailblazer Award.

The is always a long laundry list of side effects and symptoms associated with chemotherapy. Some people are lucky and only get one or two of the side effects. Others not so much, they are hit with every possible side effect listed! Adriamycin, Cytoxan and Taxol Background I thought I would share the above video with you all which takes a deep dive into exactly how I am feeling after treatment. To date, I have had 4 rounds of Adriamycin and Cytoxan, often referred to as "AC", followed by 5 of Taxol; only 7 more chemo treatments to go. Taxol is typically given in combination with other chemotherapy medicines, such as Adriamycin and Cytoxan, and all can be used to treat patients with primary breast cancer (breast cancer that hasn't spread beyond the breast). Taxol can also be used to treat advanced-stage breast cancer that is not responding to standard chemotherapy treatment. Adriamycin, Cytoxan and Taxol Side Effects The Adriamycin, Cytoxan and Taxol side effects that I am experiencing thus far include: -Hair loss -Starting to loose my eye lashes, you can really tell when I blink! -Neuropathy / numbness/ tingling in the fingers and hand -"Chemo Brain" a lot of trouble coming up with the right word -Fatigue -Lack of concentration and focus (I think this is associated with some of the fatigue and chemo brain I am feeling -Upset stomach -Extreme tiredness Managing Adriamycin, Cytoxan and Taxol Side Effects I'm managing well though. I think it is important with all of this that there are going to be good days when you feel like a million bucks, and then there are going to be days where just just don't feel well at all. I call it "my adventure" because you never know what the day is going to bring, and sometimes, you just need to roll with it!

By Jasmine Shukla Last updated 4/1/2021 Breast Cancer is the second most common form of cancer (in women), after skin cancer, and affects 1 in 8 women. Breast cancer impacts a patient's physical, mental, and emotional well-being while also affecting those who are caring for them. Women suffering or recovering from breast cancer often find it difficult to lead a normal life and struggle to revert to their life before they were diagnosed with this life-threatening disease. This struggle stems from the severe and excruciating treatments that often accompany breast cancer, even when patients know that these treatments are mandatory for survival. In the past few years, however, the pattern of treatment and chances of recovery have been bolstered significantly due to the innovations of several useful drugs, medications, and therapies. Perjeta, Herceptin, and at times, a combination of both can be successfully applied - treatments for those diagnosed with breast cancer. Perjeta Background Perjeta (Pertuzumab) is a prescription medicine approved for use in combination with Herceptin and chemotherapy for use prior to surgery in patients with HER2-positive, or early-stage breast cancer. Perjeta can also be prescribed for use after surgery has taken place in order to prevent the recurrence of HER2-positive breast cancer, as the risk is quite high during this period. The specifications of both these drugs mainly focus on stopping the growth of cancer cells right from the beginning. Herceptin Background Herceptin (Trastuzumab), is an application used as a medication against HER2-positive breast cancer, both during the early and/or advanced/metastatic stage for stopping the growth of cancer. It has been approved by the US Food and Drug Administration. Herceptin, in the early stages, can be employed as a regimen (prescribed course of medical treatment) portion along with a chemotherapy regimen that contains an anthracycline to lessen the risk of breast cancer recurring. The Path to Perjeta The drugs mentioned here are monoclonal antibodies, i.e, they bind to specific cells or tissues within the body and function as immunotherapy for the patients. Herceptin was introduced about 15 years ago in order to target HER2 as a clinical treatment for patients with breast cancer. However, Herceptin alone was not proving to be sufficient to fight against it, as most patients with HER2-positive metastatic breast cancer displayed a progression in their disease rather than an improvement. This result indicated that new therapies were needed, which, as a consequence, led to the invention of Perjeta. Perjeta and Herceptin Combination Perjeta, together with Herceptin, plus Docetaxel (a chemotherapy medication applicable for treating a number of cancers like breast, skin, neck, etc.) has become a benchmark for HER2-positive metastatic breast cancer patients. Perjeta, when administered with Herceptin, provides synergistic activity as per clinical and preclinical data. Perjeta and Herceptin Dose Perjeta and Herceptin are administered every 3 weeks in the following amounts of doses: Here are two ways of administering doses of both of these drugs to the patients: Loading Dose, an initial higher dose given at the start of any particular treatment course before dropping down to a lower regular dose, is also helpful for drugs that require elimination from the body at a slower rate. For Perjeta, Loading dose: 840mg with an infusion time of 60 minutes (volume with respect to flow rate). For Herceptin, Loading dose: 8mg/kg with an infusion time of 90 minutes (Chemotherapy varies as per the regimen) Subsequent Doses, the normal/regular once taken periodically For Perjeta, Subsequent dose: 420mg with an infusion time of 30-60 minutes For Herceptin, Subsequent dose: 6mg/kg with an infusion time of 30-90 minutes (Chemotherapy varies as per the regimen) Herceptin is a 1 year treatment, taken every three weeks, resulting in about 17 or 18 infusions. Side effects are pretty well tolerated, though you may experience fatigue, loss of appetite, nausea, headaches, a runny nose, sore throat. Perjeta and Herceptin Cost Prices of these drugs' doses are around $7.93/mg and $6.43/mg for Perjeta and Herceptin, respectively. As observed, these treatments normally have significant expenses that are unaffordable to most patients falling under low-income groups. However, there are certain insurance plans available that help cover these expenses to some extent. It is usually advised to talk to your respected doctor regarding the cost and expenses, and coverage of insurance, properly and satisfactorily. In addition, both of these drugs also have certain side effects (which are elaborated on in another blog ( Side Effects of Perjeta) , and therefore must be taken under medical observation and after proper consultations.

Aromatase Inhibitors (AIs); If your tumor is hormone-driven, then these two words have probably been thrown at you and around you several times during and after your treatment journey. They are often referred to as the dreaded post-treatment drugs or, even more colloquially, as the “good/evil drugs”. For those who have no clue what AIs are and what they do, AIs are drugs associated with endocrine therapy. This type of treatment is used for breast cancers that are estrogen and/or progesterone-positive. That is why it is extremely important to maintain a healthy weight and engage in a consistent exercise routine, which involves both cardio and strength training. It is recommended to do 30 minutes of exercise 5 days a week (or a minimum of 150 minutes per week). If you are not currently in the habit of exercising, start off with a brisk walk a few times a week and work up from there. Why Aromatase Inhibitors? If your cancer is hormonally driven, your oncologist most likely will recommend taking this form of therapy for a period of time ranging from 5 to 10 years. Because these drugs block the development of estrogen in your body, they significantly decrease the chances of an ER+/PR+ cancer returning. Tumors that are negative for estrogen, progesterone, and the HER2 protein do not respond to aromatase inhibitors, and, therefore, hormonal therapy is not prescribed to those diagnosed with triple-negative breast cancer (TNBC). This is where the colloquial phrase “good evil drugs” comes into play. Ask any TNBC thriver and they will say, “The good thing about being triple negative is that they don’t have to take drugs like tamoxifen or AIs, but the bad thing about being triple negative is that they do not take drugs like tamoxifen or AIs!”. The grass is always greener. Aromatase Inhibitor Drug List There are three aromatase inhibitors that have been FDA-approved: anastrozole (Arimidex®), letrozole (Femara®) and exemestane (Aromasin®). A breast cancer cell, on its surface, has a lot of different receptors to bind with different chemical compounds within the body. One of the receptors it has is for estrogen/ progesterone. So basically, anytime some estrogen binds to that cell, it causes that tumor to grow. The tumors are essentially fed by estrogen or progesterone. The AI drugs prevent this binding from happening by drastically minimizing the level of estrogen/ progesterone produced and hence inhibit the cancerous growth. Aromatase Inhibitors Side Effects Now, this might seem well and dandy, but the side effect of these AI drugs has proven to be no joking matter. Serious side effects such as heart problems and osteoporosis can be a result of this classification of drugs. Most cancer survivors experience intense joint pain, drastic bone loss, sudden weight gain, extreme fatigue, and loss of libido. These are just a few on the list. The one thing we all know is that most survivors react differently to the kind of treatments they are on. Women share how being on AI drugs has caused them crippling joint pain and stiffness. It’s not uncommon to hear our SBC community members joke about being young on the outside and feeling like 100 years old on the inside! These side effects are caused primarily by estrogen deprivation. To help combat the side effects of osteoporosis, doctors may also prescribe Zometa. This is a drug that helps to prevent the weakening, breaking of bones or any complications that may come from advanced-stage breast cancer. In early-stage breast cancer, Zometa has been proven to decrease the chance of the disease spreading to the bones. As breast cancer survivors, we are usually content with anything our oncologists suggest as long as it prevents cancer from coming back or progressing further, even if it means we suffer the side effects. But with AI drugs, there has been some progress on how to battle these side effects. With the recent spotlight being shone upon AI drugs and the advancements in seeing how patients are reacting to it, treatment options can be tweaked to help lessen the side effects. Talk to your oncologists and see if he/she could switch you through the different AIs to see which one has the least amount of side effects for you. At the end of the day, you must evaluate the quality of life you are living. These are important conversations to have with your medical care team and loved ones so that you can design a plan that is in YOUR best interest. Personally, I was on all three of the AIs until I landed on Letrozole. As noted earlier, everyone responds differently to this therapy. Unlike chemo, or radiation where the treatment plan felt more like a given and there was little room to negotiate, when it comes to AI’s, because we are going to be on them for 5-10 years, it’s important that we adjust and tweak as necessary so that we can have the best outcome for us, and that outcome and those decisions will look different for everyone! Aromatase Inhibitors Versus Tamoxifen Both Aromatase Inhibitors and Tamoxifen are hormone therapies, but each behaves differently. Tamoxifen blocks estrogen receptors on breast cancer cells, while AIs are used to stop certain hormones from turning into estrogen. They both tend to have different benefits and side effects as well. AIs, compared to tamoxifen, have fewer clotting issues and lower rates of uterine cancer, while tamoxifen benefits include better cholesterol levels and lower risks of osteoporosis and cancer in the other breast. But tamoxifen has a longer list of side effects than AIs, and these include stroke, depression, cataracts, uterine cancer, and blood clots. Still, each patient is different and can respond differently to each treatment, so it's important to discuss the pros and cons of each with your doctor. Natural Aromatase Inhibitor Alternatives Yoga, swimming, and walking on the beach are examples of activities that engage your joints without exerting them. It might seem silly that exercise is the only solace you can find to aid these side effects. However, there is hope still, at least in the near future. Natural AIs are fast becoming a new area of research. For example, researchers have found that certain kinds of tea extracts have been shown to inhibit aromatase. There are also edible plants and fungi that can have the same effect. There are even some fun options like coffee, spicy food, beer, and wine! (Yes, I was pretty excited about this, too!). No part of this survivorship is easy. It is frustrating that the pharmaceutical good comes with some hardship and longer-term side effects we must manage. However, communicate your pain, doubts, and fears to your peers, medical team, and most importantly to yourself. There are always solutions out there, and we can find them. And we will search till we find them!

Some people use their vacation days to go to the beach or the mountains. Others go on adventures and explore new countries. I used my vacation days this past week to attend the esteemed San Antonio Breast Cancer Symposium (SABCS) . Why? Because I was diagnosed with stage II ER+/HER2+ breast cancer and want to immerse myself in as much information as possible in order to understand my diagnosis, prognosis, and the latest news and information out there. First Impressions at SABCS2019 The convention center had the SABCS logos and colors plastered onto every door; the main entrance had what looked like a welcome rug as big as you could imagine, adhered to the floor, greeting you as you walked into the lobby. Registration signs and tables were equipped with name tags and schedules, and the exhibitors were setting up in the main hall. I was excited. The scope of the symposium is scientific. Thousands of oncologists, scientists, and researchers from all over the world swarmed to San Antonio, TX, to present their scholarly and academic work. I knew that there were going to be words, terms, acronyms, and graphs that I wouldn’t be able to understand. But that didn’t matter. I jotted down notes, scribbled down long, hard-to-pronounce names of pharmaceutical drugs, and short-hand reminders to myself to follow up on once I returned to the hotel room that evening. I was eager to learn as much as I could and feel empowered as I prepare for a follow-up oncology appointment at my cancer center the following week. Themes from the Symposium The opening session set the tone for the following 4 days. Topics focused on: Metastatic breast cancer HER (positive and negative) breast cancer Hormonal receptor-positive subtypes. Breast cancer that had metastasized to the brain. Why are some people resistant to certain therapies (To name a few). Was I Becoming a Patient Advocate? It’s natural to want to learn as much as you can about your own diagnosis, the specific drugs that you are on, and your particular gene line mutations. After all, it is what we know the most about from our own first-hand experience. But as I was sitting in the audience listening to the names of new drugs and the various cancer subtypes, I would lean over to my friends and whisper, “Oh, that’s the drug our friend Sarah is on!” or “That’s what happened to our other friend Claire.” There was a name, a face, and a person associated with every slide, with every study, with every new discovery. It became tangible. It was no longer a solo cancer adventure, but a collective one within the breast cancer population. Transitioning from Patient Advocate to a Psycho/Social Economic Activist? In a day and age where diversity and inclusion are embedded in every company’s business plan and HR strategy, it is no surprise that diversity conversations are also hot topics within the breast cancer and clinical trial communities. In the Patient Advocate Lounge, we would sit around tables discussing the role culture and ethnicity play in our healthcare system. While there are more questions than answers, at least we have begun to bring these important topics to the forefront of the discussion, and those who are diagnosed with breast cancer are using their voice to advocate for inclusion and push the envelope within clinical trials. For example, less than ~5% of breast cancer diagnoses are Invasive Lobular Breast Cancer (ILBC). In fact, the statistic is so low that it is considered a rare disease and therefore excluded from clinical trials. In San Antonio, I met 3 women with ILBC, and what is the response when they ask, “What About Us?” Triple Negative Breast Cancer makes up ~15% of breast cancer diagnoses, and while there are studies involving this subtype, there has yet to be an inhibitor that blocks the disease from developing after initial chemotherapy, surgery, and/or radiation are complete. Early-stage, triple-negative breast cancer is an aggressive form, but if one can get to the 2-year, 3-year, and 5-year mark without progression, the risk of recurrence drops significantly! It is great that women are participating in breast cancer clinical trials, but it is imperative that the participants of the trial represent a diverse group. Otherwise, we would be doing ourselves a grave disservice in our understanding of how these new drugs perform for African American, Hispanic, and Asian (etc.) women if the majority of participants are white/ Caucasian women. I was glad to see that within the General Sessions, researchers were highlighting the diversity and ethnicity of participants within their trials. Our role as patient advocates is to continue to inform women that their participation is critical and encourage them to seek out clinical trials and to get involved. A few great resources include: Count Me In: https://www.broadinstitute.org/count-me-in All for Us: https://www.joinallofus.org/en Clinical Trials through the NIH: https://www.clinicaltrials.gov/ Among the patient advocates present in San Antonio, there was a great sense of camaraderie, and that those of us who are privileged are able to leverage that status in order to raise the tide so we all can float up! Brushing Up on Your Advocacy Skills Part of advocacy is learning. Being able to speak the language and understand the “rules” so you can enable change. I thoroughly enjoyed learning about the science of breast cancer, but after 4 days of intense research presentations and discussion, I am also self-aware, know my limitations, and recognize the areas I need to develop. For example: What is the process for changing regulations when it comes to being able to participate in clinical trials? In the advent of medical marijuana, why are we not allowed to travel with it on airplanes, but in light of an opioid crisis, TSA has no problem with us bringing oxy across state lines to help manage our pain? How can advocates be part of the discussion when it comes to national and global guidelines on breast cancer best practices and determining the gold standard? The list can go on, and there are resources out there to help you hone in on your advocacy skills and make a difference not only in your lifetime, but for all of those that follow behind us until we find a cure for breast cancer. Patient Advocate Resources and Trainings to Consider: Project Lead: http://www.breastcancerdeadline2020.org/get-involved/training/project-lead/project-lead-institute.html Komen Advocacy Programs: https://p2a.co/cgXisY6 The Research Advocacy Network: https://researchadvocacy.org/advocate-institute RISE Advocate through the YSC: https://www.youngsurvival.org/get-involved/be-an-advocate/be-a-ysc-advocate#become-a-rise-advocate

I was sitting in the audience when all of a sudden a slide popped up with “HER3” on it! Throughout my journey with breast cancer, I’ve been focusing on HER2. It’s the one we hear about most often. During our initial biopsy, oncologists and pathologists usually test to see if the tumor is either HER2+, HER2-, or sometimes, it comes back unequivocal. Before I go any further, let’s talk a bit about what HER2 actually is. What is HER2? HER2 is also known as the Human Epidermal Growth Factor (HEGF) receptor 2. The HER2 gene makes HER2 proteins, which control how healthy breast cells grow, divide, and repair themselves. However, in ~20% of those diagnosed with breast cancer, the HER2 gene doesn’t work properly and reproduces too many copies of itself, which leads to the breast cells growing and dividing in uncontrollable ways (referred to as HER2 gene amplification and HER2 protein over-expression), or HER2+ Positive breast cancer. The good news is that with HER2-positive breast cancer, there are receptors on these proteins that usually respond well to treatment. The most common drugs for HER2+ Breast Cancer treatment include: Herceptin (chemical name: trastuzumab) Kadcyla (chemical name: T-DM1 or ado-trastuzumab emtansine) Nerlynx (chemical name: neratinib) Perjeta (chemical name: pertuzumab) (You can read more about Perjeta side effects here ) Tykerb (chemical name: lapatinib) I was treated with both Herceptin + Perjeta. (You can read more about these drugs in our blog here ) HER2+ Breast Cancer Prognosis HER2+ prognosis largely depends on a variety of factors such as the stage of your cancer, health of the patient, age of the patient, size and grade of primary tumor, lymph node involvement, and response to therapy. According to the American Cancer Society and National Cancer Institute, the 5-year relative survival of patients with HR+/HER2+ is 90.4%. HER1, HER3 & HER4 The ErbB protein family consists of 4 members: ErbB-1, also called HER1 ErbB-2, also called HER2 ErbB-3, also called HER3 ErbB-4, also called HER4 The HER family can play a role into why some people are resistant to hormonal therapies. Without a scientific background, I have more questions than answers but I am excited to reach out to the medical professionals to help us understand this relationship. Stay tuned for details to come! I am just as curious as you are! Until then, here are a few articles which speak to HER1, HER2, HER3, and HER4: NCBI HER1 and 2: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5950032/ Mass General Hospital has a great article on HER3 and it’s role in breast cancer ( http://targetedcancercare.massgeneral.org/My-Trial-Guide/Diseases/Breast-Cancer/ERBB3-(HER3).aspx ) OncoTarget HER4: http://www.oncotarget.com/index.php?journal=oncotarget&page=article&op=view&path%5B%5D=26867&path%5B%5D=83647

By Madhumitha Sabhanayagam When we grow a plant, there are a number of factors that we have to ensure are in place to make sure that the plant grows well. It needs sun, water, the right type of soil, and, according to my dad, some loving words once in a while. (He swears it has an effect on them!). And when the plant falls ill, we tend to adjust these factors — maybe it needs more sunlight, or maybe a dose of natural pesticide, or more organic fertilizer? Our bodies are the same; several factors play a role in our overall well-being. So, when one has been diagnosed with breast cancer, we have to take into account all the factors that affect well-being. Most of the time, we strictly pay a lot of attention or solely focus on the oncology aspect of it. Treating the disease and not the body as a whole. Breast cancer is characterized by many different physical, emotional and psychological, and psychosocial manifestations. This is where palliative care comes into play. Palliative care is what we call a holistic and all-rounded treatment option that could be offered to breast cancer patients. Palliative care is usually offered for women with advanced-stage breast cancer. The survival of women with metastatic breast cancer is often prolonged, and the prevalence of the metastatic disease is high, posing a challenge for most oncology teams to deal with the manifestations of cancer that are not clinical, but it is not restricted to them. Patients are encouraged to seek palliative care early on in their treatment journey. Palliative care is not easy to administer and is a tedious process to embark on, but the benefits are well worth the effort. What is Palliative Care? Palliative care is the care that addresses the issues that arise due to the anticancer therapies administered to the patient. Palliative care is specialized medical care that focuses on providing relief from the symptoms and stress of a serious illness. Palliative care would address symptoms such as pain, shortness of breath, fatigue, constipation, nausea, insomnia, loss of appetite, depression, anxiety, and financial toxicity. Palliative care also helps to foster better communication in family dynamics and with your treatment team. Adopting palliative care would require your oncology team to either provide palliative care on their own, or they could have a palliative care team work with them. They could work in parallel or one after another. The treatment takes into account your needs and wants to better administer the right type of treatment for you. What to Expect with Palliative Care A palliative care team would first review your case from start to end. They also take the time to sit down and talk to your family. This is to make sure they understand the efforts made on the part of the caregivers and to understand the amount of involvement they can afford. It also helps to explore all of the treatment options available to you. They would set goals: clinical, emotional, and physical goals, and they would help you construct the path to achieving them. They would be in the loop with your oncology team throughout the entire care period. Palliative care would help to address the gaps in your care journey. They tweak your clinical and palliative care as you progress. They will seek alternatives to medication if it causes intolerable side effects or if your insurance does not cover it. These are just some of the things they do. We have barely scratched the surface of what having palliative care entails. It focuses on the long-term result and the bigger picture. The care is for you, and so only tailored to benefit you the most. Take the time to research your options and invest the time to explore the option of palliative care. Advocate for yourself and utilize the services that are available out there for you. The goal of palliative care is to treat the person as a whole and not just the disease that they have. You are so much more, and so you should be treated as such. “When it rains, look for rainbows. When it's dark, look for stars.” - anonymous

By Contributing Editor, Madhumitha Sabhanayagam “Attention to health is life's greatest hindrance." - Plato “Money can't buy happiness.” “Money will not guarantee you health.” We have all heard these quotes, and even we are guilty of speaking so. Yeah, these are true quotes, but having money and not having to worry about how “am I going to afford my next cancer-preventing/remediation treatment definitely would help me smile a little bigger, and sleep easier at night. We all know how expensive cancer can be to deal with. What we fail to realize and ignore at our peril is the adversarial effect of the financial burden inflicted on cancer patients on top of all the other burdens they carry. What is Financial Toxicity? The negative effects of expensive treatment have warranted the coining of a new buzzword: financial toxicity. Financial toxicity is the emotional, mental, physical, and life-threatening financial stress caused by cancer treatment costs. Financial toxicity can linger for years and represents a vicious cycle. For example, to make appointments, we may be required to miss work, we may have to pay for daycare for the children to be watched while you are at radiation sessions, or you may have to cover travel costs. In some cases, your cancer could render you unable to work. Then you have to eat healthily, and we all know how expensive eating healthy can be. This occurs during the treatment phase, and then there is post-treatment care. You still have to get yearly check-ups. You still have to keep up with post-cancer medications, and you still are eating healthy. The job you were once capable of performing or holding before may not be yours, or you may not be capable of performing. Impact on Families Financial stress can also take a toll on families.  It can strain relationships and cause changes in family dynamics. All of this can be hard to navigate and untangle on your own. There are many marginalized communities that do not have access to gain knowledge about financial toxicity, who inevitably get swamped with bills at the end, and are left with crippling debt. Dr. Nipp advocates for talking to your treatment team about finances, even if you feel like you are not experiencing financial toxicity. To some, it is a prestige issue, to some, it is a lack of knowledge, and to some, they don't know what their finances are because they are not the breadwinner of the family. Addressing Financial Burden Talking to your treatment counselor could help you figure out alternatives to help reduce the toll on your finances. For example, based on your prognosis, you could come in bi-weekly instead of weekly, and your doctor could prescribe an alternative medication so that your insurance can cover it. These are some of the areas we could start with. A lot of the time, opening the topic up with your counselor may help them ask the right questions to drive towards a proper, economic solution to the problem. Financial toxicity is still fresh on the scene today. It is a topic gaining more momentum, and thus, more research is being done to study the phenomenon and how to best assist patients to combat it. A Cancer prognosis is no easy thing to deal with, but the best way to make sure you stay ahead of your finances is to be honest with yourself and your team. They are there to help.

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