By Dr. Paula Gordon Canadian women should be outraged. The Canadian Task Force on Preventive Health (CTF) released its latest guidelines for screening for breast cancer in women at average risk. They advise against mammography for women aged 40-49, against women doing breast self-examination (BSE), and against doctors doing breast exams. They recommend women aged 50-74 have mammograms every 2-3 years. What the CTF Gets Wrong About Screening A 2014 study of screening in Canada showed 40% fewer deaths among women who had screening mammograms than women who didn’t, but the CTF deliberately chose to ignore observational studies done with modern mammography equipment, in favour of Randomized Control Trials (RCTs) from the 1960s to 1990s, which show only a 15-20% mortality reduction. The only measurable outcome of an RCT is how many women die of breast cancer, so the CTF ignores three other significant benefits of early detection of cancer: the ability to avoid mastectomy, lymphedema, and chemotherapy. How can the CTF not recommend annual mammography starting at age 40, if it saves the most lives, and allows more women to have less aggressive treatment? The answer is they focus on “harms”: the number of women who are recalled for additional tests after screening, and “overdiagnosis.” False-Positives and Overdiagnosis About 10% of women need additional tests after screening. The CTF uses the pejorative term, “false positive.” That term implies that a cancer was diagnosed, when none was present. This is not the case: women are recalled when there is a potential cancer. This causes anxiety for many women, but it’s transient, and studies show that it doesn’t harm women long-term . The CTF gives undue weight to overdiagnosis in the harms-to-benefit discussion. Overdiagnosis is the theoretical possibility that a woman will be diagnosed with breast cancer and treated for it, but die of something else (like a heart attack) before she would have died of cancer. The rate of overdiagnosis can only be estimated. Experts estimate it at 10% or less. The CTF says that most women aged 40-49 would choose not to be screened. From my thousands of conversations with women during my career and in published research , when told that mammograms can prevent breast cancer death, and allow them to have a lumpectomy and avoid chemotherapy if cancer is detected early, most women choose to be screened. The Importance of Additional Screening for Dense Breasts The CTF calls breast density an emerging issue. We’ve known about it for 40 years ! Having dense breasts is a higher risk than having a mother or sister with breast cancer. Mammography is 96% sensitive in fatty breasts but only about 50% sensitive in the densest breasts. And when cancers go undetected by mammography, they grow larger and can spread by the time they are found. The CTF has not acknowledged the harm of not offering supplementary screening for women with dense breasts. The CTF says there’s insufficient evidence to recommend supplementary screening for women with dense breasts because of their insistence on RCTs. An RCT of screening ultrasound is underway in Japan, but it will take at least 7-10 years before it can prove mortality reduction. We have observational data from multiple studies showing that ultrasound finds an additional 3-4 cancers per thousand women . Finding these cancers earlier will allow less aggressive treatment AND reduce mortality. With convincing observational data available, women shouldn’t have to keep dying prematurely until the Japanese RCT is complete. CTF Screening Philosophy Issues The CTF exaggerates the “harms” of screening, but they don’t mention the harms of not screening. Yaffe calculated, using a model based on CISNET , that in Canada, approximately 4,000 more women can be expected to die of breast cancer in the next decade, if the CTF guidelines are followed, rather than starting screening at age 40. The CTF refuses to consider evidence other than RCTs. The Canadian taxpayer is funding this misadventure that will lead to loss of life and unnecessary suffering for women who develop breast cancer and are denied early diagnoses when cancers are small, confined to the breast, and most successfully treated. Annual mammographic screening starting at age 40 saves the most lives , albeit with the inconvenience and stress of recalls and the theoretical possibility of overdiagnosis. Supplementary screening for women with dense breasts can detect early cancers missed on mammography, saving more lives. All women and their family doctors deserve to have all the facts and the option of shared decision-making, to decide whether the harms outweigh the real benefits. Instead of protecting women from screening, it’s time to start saving women’s lives.

Published by Sponsor Store My Tumor Only by recognizing that each patient is different can oncologists begin to design tailored and effective treatments, but this requires the patient’s tumors (cancer cells and tissue) to be preserved alive. StoreMyTumor helps patients collect, process, and preserve their tumors alive (for all indications). How Storing Tumors Helps Patients FACT: Two people with the exact same cancer diagnosis can and do respond differently to the exact same treatment regimens. Each person is unique, and so is their cancer. FACT: Up to 50% of cancer patients do not respond to traditional treatments and are forced to explore advanced diagnostics and personalized treatments that require your tumor. FACT: When you match the RIGHT targeted therapy or chemotherapy to the RIGHT tumor, tumors can shrink, and hopefully the cancer goes into remission or at least remains stable. FACT: A new class of treatments called Immunotherapy (cancer vaccines) awakens and stimulates your immune system to actively fight the cancer cells with and without toxic side effects. FACT: To potentially benefit from personalized treatment options, you need tissue from your specific tumor. This tumor tissue can only be collected at the time of biopsy or surgery. StoreMyTumor preserves patients’ tumors in multiple formats so that the preserved tumor is compliant with most advanced diagnostics and treatments. The Process StoreMyTumor can work with any hospital or cancer center. The patient seeks this service before the surgery. StoreMyTumor obtains the patient’s consent and sends the patient a collection kit with detailed instructions for the surgeon. Once the tumor is packed and the kit is received back, StoreMyTumor processes the tumor and preserves it. Patients then work with their oncologist and StoreMyTumor and instruct StoreMyTumor to coordinate parts of the tumor sent for diagnostics and parts for immunotherapy, thus allowing them to maximize their potential therapeutic and diagnostic options. What is a Preserved Tumor Used For? Advanced Testing: The tumor is tested to identify the drug or combination that will work and rule out drugs that will not. This is important to identify the ideal drug cocktail from day one, as opposed to trying to learn. Personalized Immunotherapy: Tumor is used in preparing cellular immunotherapies that awaken and stimulate the immune system to fight the cancer. There are different types of immune-therapies, including Vaccines and T-cell therapy. Bottom Line Patients must make this decision before the biopsy or surgery, or ascites drainage. Every tumor is unique and contains information critical to treatment, but tumors are not preserved in the right formats by the hospital and are routinely discarded as medical waste. As the disease advances, standardized treatments are often not enough. Having the tumor preserved is the only way to test it and use it to create more customized treatments and strategies that are more likely to work. It is a process, and this is personalized medicine at its best. StoreMyTumor is the trusted tumor preservation service leader for cutting-edge cancer centers worldwide. Team StoreMyTumor +1.267.702.5501 cs@storemytumor.com www.StoreMyTumor.com

Sponsored by Store My Tumor Written by Robyn Stoller Today, most people with cancer receive a one-size-fits-all approach to treatment, meaning they receive the same treatment as others who have the same type and stage of cancer. However, research has now shown that each person’s cancer is unique, and each tumor may contain information critical to treating that cancer. Although still in its infancy, precision medicine is beginning to change the way cancer is treated. Here are 5 facts you need to know about precision medicine and cancer: 1. Precision Medicine Helps to Personalize Cancer Treatments The National Institute of Cancer defines precision medicine (also known as personalized medicine) as “an approach to patient care that allows doctors to select treatments that are most likely to help patients based on a genetic understanding of their disease.” [1] 2. No Two Cancers are Exactly Alike We now know that just as no two people are exactly alike, no two cancers are alike. Using this knowledge, precision medicine aims to treat cancer by targeting mutations that allow cancer to grow and spread. To identify those mutations or genetic changes that drive a particular person’s cancer, we test DNA from their tumor(s). This is known as “molecular profiling” and “genetic sequencing”. This testing may also help patients avoid treatments that are ineffective, unnecessary, and potentially harmful. 3. Precision Medicine is Transforming the Way Some Cancers are Treated TODAY Several cancers are already benefiting from precision medicine treatments . Today, oncologists can prescribe targeted therapies to cancer patients whose tumors have certain genetic mutations. For example, Trastuzumab (Herceptin®) or lapatinib (TYKERB®) may be given to a woman whose lab tests show that her breast tumor has too much HER2. Everolimus (Afinitor) may be used for women who have gone through menopause and have advanced hormone receptor-positive, HER2-negative breast cancer. As a result, patients are experiencing better outcomes with fewer adverse effects compared to standard chemotherapy. Please note: At this time, not all mutations can be matched with known treatment options. 4. Immunotherapy is Already Helping to Save Lives One of the most promising areas in cancer research and precision medicine today is “ Immunotherapy , “ which uses the body’s own immune system to prevent, control, and eliminate cancer. Credited as the first therapy ever proven to extend the lives of patients with metastatic melanoma, immunotherapy is changing the way some cancers are treated today. In fact, immunotherapy offers such great promise that one day we may have a new kind of doctor called an immuno-oncologist. 5. StoreMyTumor is the First Step to Personalized Medicine Your tumors contain critical information needed to personalize your cancer treatments. When live cancer cells and tissue are stored properly , additional and more effective cancer treatment options may become available to you. Personalization is a process. It starts with having access to the cancer cells, then testing the tumor to identify the best drug(s) that will kill cancer cells. StoreMyTumor , the leader in tumor collection, processing, and storage services, connects you to cutting-edge technologies that are beyond standard treatments. To learn more about personalizing your cancer treatment, schedule your FREE consultation today with our Patient Advisor! [1] https://www.cancer.gov/about-cancer/treatment/types/precision-medicine

Jan. 21, 2019| By Diane Mapes / Fred Hutch News Service Original article published on FredHutch.org here . Study reveals how blood vessels in the bone marrow protect dormant tumor cells, suggests a way to kill them in their sleep. Fred Hutch translational researcher Dr. Cyrus Ghajar talks about the spread of breast cancer tumor cells during the third annual Northwest Metastatic Breast Cancer Conference in October 2018. Video excerpt by Connor O'Shaughnessy / Fred Hutch News Service Researchers at Fred Hutchinson Cancer Research Center in Seattle may have found a way to essentially smother cancer cells in their sleep, preventing them from ever waking up and forming deadly metastatic tumors. Fred Hutch translational researcher Dr. Cyrus Ghajar Photo by Robert Hood / Fred Hutch News Service The work, led by translational researcher Dr. Cyrus Ghajar , has also turned on its ear the longstanding belief that chemotherapy can’t kill dormant disseminated tumor cells — cancer cells that escape early on and hide out in other regions of the body — because those cells are in a “sleeper state.” They’ve stopped growing, so chemo, which blindly targets all fast-growing cells, healthy and otherwise, doesn’t work. That’s not quite the case. “It’s always been assumed that dormant cells cannot be killed by any kind of chemotherapy because they’re not dividing,” said Ghajar, who runs the Laboratory for the Study of Metastatic Microenvironments at Fred Hutch. “But what we’re showing is that’s not true. They’re relying on survival signaling in their microenvironment, in this case specifically from blood vessels within the bone marrow. And if you can take away that signaling, you can sensitize them to chemotherapy.” Ghajar’s paper, published today in Nature Cell Biology , is the culmination of more than four years’ work and proposes both a paradigm shift in how we view dormant disseminated tumor cells — and a new therapy to potentially slay this sleeping giant. Although it’s still early days, Ghajar and his team slashed the metastatic relapse rate in his mice by more than two-thirds. Rebecca Seago-Coyle, a 43-year-old IT project manager and breast cancer survivor who worked with the team as a research advocate, said she loved Ghajar’s innovative approach — and his inclusiveness. “One thing I love about Cyrus is that he makes room for patients,” she said. “We always have a seat at the table. I’m not metastatic, but I still have that fear that the cancer could come back. Thirty percent of early stagers go on to become metastatic. If we could lower that number, that would be huge.” The Nonlinear Path to Metastasis Cancer doesn’t just spread because a primary tumor has reached a certain size or stage. Disseminated tumor cells, or DTCs, can break off before a tumor has even formed and travel to distant sites in the body where they lie dormant until something “wakes them up” and they start the deadly process of metastasis, or cancer spread/colonization. One common hideout for these sleepy creeps is the bone marrow. Dormant tumor cells have been found in the bone marrow of breast cancer patients at the very earliest stage of the disease — DCIS or stage 0 — and Ghajar said they’re most likely present in other patients with early-stage disease, as well. Past research has shown an association between DTCs in the bone marrow of cancer patients and metastatic recurrence, and not necessarily just bone metastasis. “Patients with breast cancer cells in the marrow recur more often than patients who don’t have cells in the bone marrow,” said Ghajar, who collaborated with a cadre of Fred Hutch researchers as well as scientists from the University of Colorado Anschutz Medical Campus and the University of California, San Diego. “And tumor cells in the bone marrow predict metastasis in a variety of different sites. They even predict metastasis in cancers that never get bone mets.” Why disseminated tumor cells snuggle up to the bone marrow microenvironment, where they go dormant, is still a bit of a mystery, although we do know that dormant blood stem cells hang out in the same place. What wakes the sleeping cancer cells up and starts them growing again also remains a huge question. But Ghajar said there’s scientific evidence that “if you can successfully remove disseminated tumor cells, you can prevent those patients from having mets.” And that has become the focus of his work. Fred Hutch's Dr. Cyrus Ghajar with breast cancer patient research advocates Teri Pollastro (left) and Rebecca Seago-Coyle. Photo courtesy of Diane Mapes Breast Cancer’s ‘Long Tail’ For this research, Ghajar and his team focused on the most common type of breast cancer, estrogen-receptor positive (or ER+), which comes back as metastatic disease five or more years after treatment in up to 17 percent of early-stage patients. In comparison, the metastatic recurrence rate for all breast cancer patients is thought to be between 20 and 30 percent. “There’s this long tail in ER+ breast cancer where patients will go for years and years without any kind of problem and then five, seven, 10, 15, 20 years later, they have a recurrence,” Ghajar said. Unlike some early-stage cancers, metastatic disease is incurable. Patients with stage 4 disease are in treatment for the rest of their lives. And while some patients live with their cancer for years — or even decades — when their treatment stops working or they run out of options, they die. Ghajar’s finding, if it holds true, could reduce the number of early stagers who go on to become metastatic, effectively snipping off breast cancer’s long tail. “We’re not trying to treat a primary tumor or trying to treat mets,” he said. “We’re trying to treat DTCs, for which there are no current therapies.” Teri Pollastro, 58, another research advocate who worked with Ghajar, went from DCIS, or stage 0, to stage 4 years after her initial treatment. She believes her advanced cancer was a direct result of awakened DTCs. “That’s exactly what happened to me,” she said. “They stopped treatment, and the stuff that was quiet and sleeping came to life.” Fred Hutch prostate cancer researcher and oncologist Dr. Pete Nelson Fred Hutch file photo Uncoupling Dormancy and Chemo Resistance Ghajar said work he did as a postdoc in the lab of Dr. Mina Bissell at Lawrence Berkeley National Laboratory, as well as research done at the Hutch by Dr. Pete Nelson , led him to question the conventional wisdom of DTCs surviving chemo due to their paused cell cycle. “We’ve seen evidence that quiescent cells respond to chemo,” Ghajar said. “They seem to sense when you dump chemicals on them. And there’s been other evidence that architecture — the microenvironment — may be more important than the cell-cycle state in terms of the response to chemotherapy.” Tumor microenvironments are the noncancerous cells and molecules surrounding tumor cells; they're often co-opted by the cancer to help it grow. To pursue this scientific question, Ghajar and his team looked at how DTCs behaved in two preclinical models: mice with breast cancer and organotypic cultures, i.e., human blood vessels and bone marrow tissues growing in a dish. The researchers first dosed mice with chemotherapy, then looked for DTCs in their bone marrow. The only tumor cells that survived were those that were nestled close to the microvasculature, the tiny blood vessels of the bone marrow. They then seeded the organotypic cultures with human breast cancer cells. The tumor cells surrounded by blood vessels grew dormant; those without blood vessels continued to rapidly divide. The team then treated the tiny tumor environments with chemotherapy to determine whether DTC survival was coincidental or something else. “When we added increasing doses of chemotherapy, we noticed that without blood vessels, the breast tumor cells died,” he said. “And with the blood vessels, the breast tumor cells didn’t die. So maybe the blood vessels were protective.” To find out, Ghajar and his colleagues used a growth factor to wake up the dormant cells, then treated them with chemotherapy. Conventional wisdom held that the awakened DTCs would be killed because they were now active and rapidly dividing. But that’s not what happened. “It didn’t matter at all that we had woken them up,” he said. “The chemotherapy had no effect because the blood vessels were there.” Images of mouse femurs from Fred Hutch's Laboratory for the Study of Metastatic Microenvironments show the impact of a new combination therapy on disseminated tumor cells (which show up as green). The top image shows a section of a mouse femur treated only with chemotherapy. The bottom image shows a section treated with both integrin inhibitors and chemotherapy. Ghajar and his team were able to reduce the reservoir of DTCs in the mouse's bone marrow by 94 percent using the combo treatment. Photos courtesy of Laboratory for the Study of Metastatic Microenvironments Silence the Signal, Kill the Cancer The researchers then went about trying to determine what it was about the blood vessels that offered protection to both active and quiescent cancer cells. In collaboration with Peter Nelson’s laboratory at the Hutch, they used RNA sequencing to look at the genes that were being activated or expressed in the organotypic cultures, both with and without the blood vessels. They then used protein analysis or proteomics to discover what, exactly, was being secreted and deposited on the surface of the various cells that might result in this protection. Eventually, They Found the Answer “The main thing that was being enriched when blood vessels were present — as opposed to when they weren’t present — were molecules that bind integrins,” Ghajar said. Integrins are proteins that, among other things, help with cell signaling; they integrate signals from the outside of the cell with the inside of the cell. Humans produce different types of integrins, and there are also several existing molecular inhibitors, or “off-switches,” for them. The research team screened these integrin inhibitors to see if any would interrupt the blood vessels' protective signaling and found two that did just that. They then combined integrin inhibition with chemotherapy and tried it out on the preclinical model of human bone marrow, to great effect. “When we interrupted signaling from those two integrins, we started sensitizing cells to chemotherapy,” Ghajar said. “Chemo on its own would kill one-third of all the single cells in our culture. But when we combined integrin inhibition and chemotherapy, we killed over 90 percent of the single cells in our cultures.” What’s more, the team was able to kill the DTCs without first waking them up, showing that cell division was not necessary to get chemo’s toxic attention. Once the researchers moved onto mouse models with this new combo therapy, they were able to reduce the reservoir of DTCs in their bone marrow by 94 percent. Further, by following the mice for a number of months, they determined their odds of metastatic recurrence were greatly reduced. “With only chemo, over 70 percent of the mice relapsed with mets,” Ghajar said. “But when we used the combo, only about 22 percent of them relapsed with bone mets. We were able to save a lot of mice from relapsing with breast cancer metastases using this approach.” Next Steps for the Science The big question, as always, is “Will it work in humans?” “Oftentimes, you have something that looks beautiful in a mouse, but when you try it in a human, it never works the same,” Ghajar said. “But we really tried hard to mitigate that by the models we used.” Ghajar said his next step will be to make human versions of the molecule he used for integrin inhibition and then test them to make sure they’re safe in people. Once that’s established, the research can move toward a clinical trial that tests the new combo therapy on cancer patients. Although cautious about getting ahead of the science (a clinical trial could be three to five years away), Ghajar does believe his research demonstrates that dormant cells can be killed by chemo without waking them up, which is significant in and of itself. “No matter what happens with regard to the specific molecules we’ve discovered, that concept is going to endure,” he said. Could this potentially help patients currently living with metastatic breast cancer? Ghajar said it’s too early to draw any conclusions about that. “We’re trying to find a way that we can augment therapy up front to kill the roots of metastasis before they arise,” he said. “Would this possibly be a way to eliminate the cells that are going to seed the second met, or the third met, or the fourth? There’s potential, but it’s not something we trialed experimentally.” Pollastro, the patient advocate living with metastatic disease, said she’s optimistic, despite the nascent stage of Ghajar’s work. “Everything starts in a mouse model, doesn’t it?” she said. “I’m very hopeful. And that’s a great next question for him to investigate. Wouldn’t it be wonderful if that worked?” Funding for this research came from Fred Hutch, the Cuyamaca Foundation, a Department of Defense Era of Hope Award, Breast Cancer Research Fund, National Breast Cancer Coalition’s Artemis Project for Metastasis Prevention, Susan G. Komen, the National Institutes of Health/National Cancer Institute, and the Fred Hutch/University of Washington Cancer Consortium. Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine, and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied . Email her at dmapes@fredhutch.org . Are you interested in reprinting or republishing this story? Be our guest! We want to help connect people with the information they need. We just ask that you link back to the original article, preserve the author’s byline, and refrain from making edits that alter the original context. Questions? Email us at communications@fredhutch.org Return to reading more blogs

SurvivingBreastCancer.org had the pleasure of meeting Janine Gilarde during Breast Cancer Awareness Month last October at one of our Survivors, Thrivers, and Friends events. It was one of our first events in MA, and it was a packed house. We know that diet and nutrition are essential components of managing a cancer diagnosis and preventing recurrence. Our event focused on diet, nutrition, plant-based meal plans, meditation, yoga, pilates, and overall health and wellness. It was a natural fit that SurvivingBreastCancer.org and Janine crossed paths, and we are thrilled to partner with her as a guest blogger for our community! By Janine Gilarde, RN & Healthy Living Coach Originally published here on 4/14/2019. Weight gain, especially during or after cancer treatment, can be unexpected and distressing, but it’s not uncommon. Cancer itself — along with side effects from treatments such as chemotherapy, radiation, and surgery — can significantly impact your weight. It’s never too late to take steps to improve your health. Whether you were overweight or obese before cancer, or gained weight during or after treatment, managing your weight after a cancer diagnosis is possible. Common Beliefs About Losing Weight Before being diagnosed with cancer, you may have already tried several ways to lose weight or increase physical activity and found the results discouraging. Here are some common beliefs that may prevent people with cancer from pursuing a healthier lifestyle. “I’VE TRIED EVERYTHING AND JUST CAN’T LOSE WEIGHT” Losing weight is challenging.  You may feel you have “failed” because previous attempts to lose weight have not worked. The truth is that you just haven’t found what works for you yet.  Many people find it easier to lose weight when they have a structured program that offers accountability and support. “THE HARM HAS ALREADY BEEN DONE” It is never too late to improve your health.  Many studies have shown that people who choose healthy foods and exercise regularly are at lower risk of having the cancer return or of developing a new cancer. In addition, changing to a healthier lifestyle reduces the risk of other medical problems, such as diabetes and heart disease . “I ENJOY EATING AND DON’T WANT TO CHANGE MY DIET” You can still enjoy the foods you love, but with more balance. Focus on eating foods that are nourishing, while reducing non-nutritional foods that are high in calories and unhealthy fats. Even small reductions or changes to what you eat and drink can help you lose weight slowly over time. Healthy Diet – Healthy Weight – Healthy Lifestyle Nutrition Nutrition is not just about calories – where you get your calories matters. If you want to improve your health, focus on foods that are nutritionally dense. There are some studies that suggest eating this way can help prevent and reverse many chronic diseases, including cancer. Physical Activity Aerobic and strength training exercise can improve your quality of life, help reduce fatigue, lessen muscle loss, and prevent the gain of body fat.  Physical activity is also important for weight management. Behavior Change Support For many, being overweight or obese is more complex than simply eating too much and exercising too little. It’s important to get support when you are trying to lose weight. There are many studies showing that working with a weight loss specialist/wellness coach can help you make healthy lifestyle changes and stick with them over time. More information about Janine and her healthy tips can be found on her website .

By Store My Tumor You know that the standard of care for cancer is simply not enough, and if your cancer is not contained early on and actively managed, there’s a high risk that the cancer will recur and progress. What you may not know, and is a vital component to advanced cancer treatment, is that tumor preservation is the only way to customized treatments and strategies that are more likely to work. What many cancer patients do not know and often find out too late is that a live cancer tumor is required in order to design personalized treatment options, and how that live tumor is stored is a critical component. If you choose to have your hospital store your tumor, it will NOT be preserved in the right formats. Hospitals routinely discard tumors as medical waste. StoreMyTumor offers a service that can help you collect, process, and store your tumors in multiple formats so that you continue to have access for diagnostics and treatment. Don’t let anyone discard your tumors. Your Tumor Can Help You Answer Tough Questions Preserving the tumor or biopsy in multiple formats is the first step toward developing personalized, effective treatments. With the tumor preserved in the right format at the time of surgery or biopsy, you can answer very big questions, such as: Which chemo is my tumor most likely to respond to? Which one of the thousands of drugs out there may work on my tumor? Are there any experimental drug treatments / clinical trials out there I should consider? Is there a certain combination that may work better than the standard or one drug? Which immunotherapy drug/treatment is available for me? Diagnostics Instead of Guessing There are diagnostic tests that synthesize various data points about your tumor and translate them into specific recommendations that become your personalized cancer treatment roadmap, such as: Genetic testing: Checks for hundreds of targets on the tumor and matches these targets to chemo/drugs and experimental drugs designed for that target. Chemo-sensitivity testing: Tests to determine which chemo is most effective. This is vital because chemo has toxic side effects. Drug screening / Organoids: Tests a wider range (100+) of drugs and combinations of drugs, including chemo, targeted drugs, and immunotherapy drugs. Personalized Immunotherapy Instead of a Wait-and-See Approach Immunotherapy is also another area patients consider. It educates your own immune system to fight the cancer cells. Immunotherapy is experimental, typically considered in parallel to drugs and standard treatments, and helps extend time in remission. In summary, here’s what is possible when you preserve your tumor: Bottom Line No two tumors are alike, and each contains important information critical to the treatment. Tumors are NOT preserved in the right formats by the hospital, and are routinely discarded as medical waste. Don’t let anyone discard your tumors. For more information: call +1 267.702.5501 or www.storemytumor.com Team StoreMyTumor +1.267.702.5501 cs@storemytumor.com www.StoreMyTumor.com Return to the blog .

Written by, Angela Duncan M.S. and Mary Jane Haake, CPCP More information and products can be found at Hip Hemp, LLC. Studies show that up to 50 percent of women suffer from a lack of vaginal lubrication. The condition is not limited to menopausal women and can be experienced at any age. The good news is you’re not alone, and this condition is treatable. Although society is slowly focusing on women’s intimate health issues, there is a long way to go. Studies conducted in 2014 show that of the 64 million postmenopausal women, 32 million suffer from vaginal atrophy. Since women’s intimate problems have been taboo, more than half of these women did not know that their symptoms were caused by menopause or hormonal changes and that their symptoms can be treated and reversed. Other studies conducted show that nearly three in five women have experienced dryness and painful sex. The problem is that nearly 43% of women who have these symptoms will not reach out, or they do not have a place to turn for advice about age or hormone-related changes to their bodies. Without the comfort of talking about intimate health, some women may not know what a normal symptom is and how to treat it, or when they should stop keeping their secret and talk to someone about an easily treatable problem. Education and encouragement are just a couple of ways to help make social taboos of women’s intimate health a thing of the past. Vaginal atrophy is a real struggle that many women of all ages face on their own. Women staying silent about this very real problem can not only affect their health but also affect their relationships and quality of life. Vaginal moisture Some say thin, dry vaginal and vulvar tissues affect 75% of postmenopausal women. But it’s not just midlife or older women who suffer from vaginal dryness. There are a number of other circumstances that can thin and dehydrate your vagina, such as having a baby, nursing, taking hormonal contraception, being treated for cancer with chemotherapy or radiation, and medications such as anti-histamines or decongestants. Vaginal moisturizers are used to prepare and heal your vagina so that you can once again enjoy intimate relations. “In the Pink” organic botanical moisturizers restore balance without the use of chemicals. You literally turn back the clock while you sleep. Consider them a daily “vaginal supplement”. “In the Pink” Moisture Drops are a safe and effective choice that just may change your life. What Can I Do? Vaginal dryness is treatable. The first goal is to find out what is causing your problem and then come up with a plan to help naturally restore your vagina, whether it is stress relief or making a change in your medications. Most natural lubricants on the market will provide short-term relief, but it is important to find long-term relief as well. In The Pink offers a Vaginal Moisture Drop that helps soothe, hydrate, and restore your vagina. This pearl is rich in Omega-3 and 6 linoleic acid with anti-inflammatory, detoxifying, and analgesic properties. This pearl is designed to closely mimic your natural lubrication while restoring tissue elasticity. In The Pink ’s Intimate Massage Oils are a lubrication relief crafted from estrogen-free organic ingredients. This botanical blend is crafted to closely mimic a female’s natural lubrication, along with the added benefits that essential oils have to offer. If you desire an all-natural product to provide lubrication, moisture, aromatherapy, pain control, and enhanced intimate play, this is the lubrication for you.

By William Laferriere A few years back, my girlfriend was diagnosed with Breast Cancer at the tender age of 34. I went into overdrive and performed my due diligence as a Caregiver. I purchased a TV (we hadn’t owned one for years). Now you may be asking yourself - What? All of my research indicated that laughter could play a significant role in the healing process and that improved health and wellness in general could be considerably enhanced by laughter. Ergo, the TV. Understandably, it’s quite difficult to find positivity and levity in a breast cancer diagnosis, but I felt then, and still strongly believe, that comedic relief and positivity should play an indispensable role in one’s treatment. In this blog, we publish links and argue in support of the positive medicinal qualities of laughter. A recent study by the Mayo Clinic found the following: “Whether you're guffawing at a sitcom on TV or quietly giggling at a newspaper cartoon, laughing does you good. Laughter is a great form of stress relief, and that's no joke.” A good sense of humor can't cure all ailments, but data is mounting about the positive things laughter can do. Short-term benefits include organ stimulation, endorphin release, cools down the stress response, and actually can decrease your heart rate and blood pressure. Long-term effects include an improvement to your immune system (positive thoughts can actually release neuropeptides that help fight stress and potentially more serious illnesses), relieve pain, and increase personal satisfaction. Humor lightens your burdens, inspires hope, connects you to others, and keeps you grounded, focused, and alert. It also helps you release anger and forgive sooner. With so much power to heal and renew, the ability to laugh easily and frequently is a tremendous resource for surmounting problems, enhancing your relationships, and supporting both physical and emotional health. By seeking out more opportunities for humor and laughter, you can improve your emotional health, strengthen your relationships, find greater happiness—and possibly add years to your life. Outside Resources Laughter is the Best Medicine Laughter really is contagious—just hearing laughter primes your brain and readies you to smile and join in the fun. The link between laughter and mental health. Laughter stops distressing emotions. You can’t feel anxious, angry, or sad when you’re laughing. Laughter helps you relax and recharge. Stress Relief from Laughter? It's No Joke Laughter enhances your intake of oxygen-rich air, stimulates your heart, lungs, and muscles, and increases the endorphins that are released by your brain. Activate and relieve your stress response. A rollicking laugh fires up and then cools down your stress response, and it can increase and then decrease your heart rate and blood pressure. Laughing Therapy: The 7 Health Benefits Of Laughter Whether you believe in the healing power of humor against illnesses or not, practicing laughing more often will leave you uplifted and refreshed; plus, in the light of laughter, everything always looks a lot better! Laughter: Good For Your Health "Laughter", Provine believes, "is part of a larger picture. Laughter is social, so any health benefits might really come from being close with friends and family, and not the laughter itself". Laughter Meditation: 5 Healing Benefits In fact, laughter can actually alter dopamine and serotonin activity in your brain, offering a noninvasive and non-pharmacological option for dealing with stress and depression. Next time you’re feeling overwhelmed, make time to practice laughter meditation and harness the power of its healing benefits. Emotional Release 6 Reasons Why Laughter Is the Best Medicine | The Chopra Center Studies have found that laughter can have healing properties, and it’s contagious. Here are six reasons why you should start laughing today. Laughter is Contagious. The discovery of mirror neurons—what causes you to smile when someone smiles at you—gives credence to the belief that laughter is contagious. In our research, above is a short video you can follow along with and learn to make yourself laugh instantly! Give it a try and let us know if you were able to achieve a deep belly laugh in the comments! Keep smiling, laughing, and celebrating life!

Each year, the Living Beyond Breast Cancer (LBBC) organization hosts an extraordinary conference. This year's theme was “Sharing Wisdom, Sharing Strength”. There were over 400 attendees, 4 dozen exhibitors, 4 pre-conference networking opportunities, and 11 sessions, all packed into a day of learning in Philadelphia, PA. Some of the topics I’d like to highlight here are: Sex and Intimacy, Connections, Late Stage Breast Cancer, and Knowing Your Body. Sex and Intimacy The subject of physical intimacy was a hot topic that bubbled up among younger women and early-stage breast cancer patients. We hear all the time from younger women diagnosed with breast cancer that they have a unique set of challenges, questions, and experiences. Their concerns differ compared to older women who have been diagnosed with breast cancer and who have had the opportunity to start a family and may have already gone through menopause. Being thrown into menopause, due to chemical/hormonal treatments (such as Zoladex, Tamoxifen, or any of the aromatase inhibitors accompanied by a Lupron shot), may hasten several deleterious side effects, i.e., hot flashes, bone loss, weight gain, and vaginal atrophy . These recurring issues invite us to take a deeper dive, build a community around like-minded individuals, and offer resources and support. We were most fortunate in that we were able to record a podcast with notable Breakout Session Speaker Dr. Monique Gary, DO, MSc, FACs, on this most apropos subject matter. This podcast will be available on “Breast Cancer Conversations” in the coming weeks (found by searching iTunes, Spotify, SoundCloud, etc). Following the LBBC Conference, we hosted a Breast Cancer Survivor/Thriver brunch where we got to meet a number of women under forty who opted not to harvest and preserve their eggs. This was due primarily to their cancers being so aggressive, and their oncologists suggested starting chemotherapy immediately. It's a very personal choice for everyone. No regrets were expressed, and most held onto the acceptance that there are other ways to start a family. For those of you who are looking to start a family, it is important to have this conversation with your oncologist and fertility team so that you can plan ahead and make the best decisions for you. If the question about family planning doesn’t come up in your initial conversation, bring it up! It’s your right! Making Connections It's important that we share stories of those who have been diagnosed with breast cancer. A breast cancer diagnosis can be quite lonely (see related blog post here ). You may have an abundance of support from family and friends, but what we’ve come to realize is that unless you are going through it yourself, it is hard to relate to and understand what it is we are actually going through. At the LBBC Conference, there was such incredible energy. You could approach anyone and immediately dive into a detailed conversation about your diagnosis, treatment plan, and lingering questions without needing to start from the very beginning (and without having to explain the definition of every term). Late Stage Breast Cancer I felt privileged to be able to speak with women who are living with advanced/late-stage breast cancer (i.e., metastatic breast cancer or MBC). These conversations highlighted many different issues. There were many notable concerns and needs compared to the conversations we held with the "early stagers". Women had an opportunity to check a box for what their biggest concerns were, and unanimously, no one checked the box for sex and intimacy. That topic did not play a significant role. Similar to younger women who express unique needs and concerns, these women also shared a similar sentiment. The hot topics of these discussions were: How to manage the good and the bad news Navigating Death (your own or others) Understanding Mortality Here is a most salient notation from the above-referenced conversations: What strategies can we utilize when members of our community pass away because there is no cure? Oncologists may tell you that your disease is not curable, but it is treatable. However, the realities of the prognosis weigh heavily on those diagnosed and their loved ones. The beauty that emerged from these back-and-forth conversations was the appreciation of every detail of life, i.e., feeling the warm sun hit our faces, the taste of ice cream on a summer afternoon, the smell of pine cones in winter, or the beauty of watching the seasons change. Everyone agreed that "life is just different now." This Week’s Survivor Story Kandace M. shares her breast cancer story with us. Her experience brings a lot of these themes together. She is young. Her breast cancer has metastasized. In her first life, she was a marathon runner who qualified for Boston. In her second life, she is a conquering stage IV breast cancer. Know Yourself and Your Body I know many of us consider ourselves to be healthy, we eat well, we have started to follow a more plant-based diet, and we exercise regularly. But even without a genetic mutation, breast cancer can strike (only 10% of diagnoses can be attributed to a genetic predisposition). It may be living within us long before symptoms surface (if they ever do!). You know yourself the best. If something does not feel right, get it checked out, be it a headache, bone pain, or lumpy scar tissue. Know that medical professionals want to be encouraging and tell us not to worry. Sometimes they will not give us the service we are seeking, like a scan or blood test, to give us peace of mind. But if there is a key takeaway from the LBBC conference this year, it is that “we know our bodies the best and persistence is key. If your doctor thinks your symptoms are "nothing", or that "you are too young to have breast cancer," or that "you have no family history" etc., be encouraged to advocate for yourself, get a second, third, or fourth opinion until you find a doctor who will listen to your intuition and partner with you on your medical journey.” XO, Laura

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 .