October MAY BE Breast Cancer Awareness Month, but Metastatic Breast Cancer is
Here All Year.
Help us spread the word… year-round!
Each month, our Here All Year campaign explores a new topic around metastatic breast cancer—from myth and stigma busters, to new research and strategies for improving outcomes. Want to help make a difference for people living with MBC, all year long? Dig deeper into the research, explore the available resources and share them on your social and email channels.
July 2021 | Metastatic Lobular Breast Cancer
Invasive lobular carcinoma (ILC) is a distinct subtype of breast cancer with unique cellular structures, biology, and behavior. ILC is the 2nd most common type of breast cancer and accounts for up to 15% of all breast cancers including mixed ductal /lobular. 90% of lobular breast cancers are ER/PR+ HER2-, although there are subpopulations that are ER/PR negative, triple negative, or HER2+. This histology can also change over time due to treatment resistance and acquired genomic mutations. In addition to the most common type of Classic ILC, there are special morphological subtypes including Pleomorphic, Solid, Alveolar, and Tubulo-lobular which have different characteristics.
ILC differs from invasive ductal carcinoma (IDC) in that the cells grow in a single file and do not always form a lump or a mass and therefore can be harder to diagnose. ILC has frequent late recurrences and is generally slow growing. Because of ILC’s unique features there are challenges in initial diagnosis, imaging for staging, and clinical trial enrollment. Importantly, metastatic ILC can travel to unusual sites.
Currently treatment is the same for ILC as IDC , depending on histological subtype. In early stage ILC, studies have shown some evidence that ILC may respond differently than IDC to Tamoxifen and Chemotherapy. Two recent reviews on metastatic breast cancer have shown that CDK4/6 inhibitors and Erubulin (a single agent chemotherapy) show similar efficacy in metastatic ILC when compared to IDC.
ILC has not yet been studied enough to be well understood and more research is needed to refine treatments for people living with metastatic ILC.
This month’s content was developed in collaboration with the Lobular Breast Cancer Alliance (LBCA). The LBCA was founded by patients to raise awareness about ILC and stimulate more ILC research. Their website provides the most current information about ILC and metastatic ILC and houses a comprehensive ILC publications library. Learn more about ILC and the LBCA at https://lobularbreastcancer.org.
Click on the image in each section below to read more about the science behind the topic.
Like invasive ductal carcinoma (IDC), invasive lobular carcinoma (ILC) can metastasize to the bones, lungs, liver, thoracic and abdominal lymph nodes, and brain, but can also spread to unusual sites such as the gastrointestinal tract (i.e., stomach, small intestine, colon), gynecological organs (i.e., ovaries, uterus), the abdominal lining (i.e., peritoneum) and the genito-urinary system (i.e., bladder and ureter).
As with IDC, the most common site of ILC metastases is to the bones. Lung and liver may be less common sites for metastases in ILC than in IDC. However, ILC may travel to tissues such as the Pleura (lining of the lung) and in rarer cases, the Leptomeninges (lining of the brain and spinal cord) and the Orbital canal (tissues behind the eye).
Because of the potential for ILC to metastasize to uncommon sites, it is important for patients with lobular breast cancer and their oncologists to be aware of these differences, and to discuss the importance of recognizing and reporting possible symptoms referring to these unusual sites of metastases.
The linear growth pattern of ILC sometimes makes it difficult to detect metastatic ILC with current imaging technology such as traditional computed tomography (CT), positron emission tomography (PET) and bone scans. It is well established that primary ILC (in the breast) can be more difficult to detect on imaging than primary IDC. Distant metastases in all breast cancers are more easily seen in the bones, liver, and lungs than in other unusual sites. However, studies are showing that certain types of imaging may be more effective in visualizing different sites of ILC metastases. For example, bone metastases, (the most common site of ILC metastases) may be more visible on integrated FDG PET/CT scans than on CT/ bone scans. There is quite a bit of variety in the efficacy of the types of scans used in relation to different sites of metastases suspected. This makes it extremely important for radiologists to be aware of the ILC histologic subtype when interpreting imaging scans for metastatic disease, and it is also important to note what has proven to work well in each individual patient.
Current research on new types of PET scans are showing promise in ILC. Two early prospective trials on new imaging tracers for PET scans are demonstrating value at imaging ILC, with some advantages compared to the currently available FDG PET, which targets sugar metabolism. Fluoroestradiol (FES) is a novel imaging tracer (recently FDA approved), based on estrogen expression in ER+ tumors and may also more reliably assess anti-estrogen therapy response than FDG PET/CT. Fluciclovine (FACBC) targets amino acid metabolism and may also more accurately detect ILC metastases than other imaging methods.
These new tracers could provide improved evaluation of metastases and assessment of treatment responses and could therefore result in improved treatment decisions for patients with ILC.
There are many clinical trials available for patients with metastatic breast cancer but only a few that focus specifically on diagnostic capabilities and treatment options in metastatic lobular breast cancer.
One of the primary challenges with studying treatment effect is that the typical mechanism used to assess efficacy in clinical trials with metastatic patients, the RECIST criteria, which measures treatment response on CT scan based on “measurable” disease, which is less common in ILC. Due to the diffuse pattern of ILC, it often does not form a mass, making it “unmeasurable,” therefore making these patients ineligible for many trials. In a recent abstract, patients with metastatic ILC were shown to be significantly underrepresented in clinical trials of breast cancer, likely due to the application of RECIST criteria.
Improved staging and/or detection of disease/disease recurrence could result in improved treatment in patients with metastatic ILC. There are current and prospective clinical trials that are using new types of tracers for imaging showing promise in visualizing ILC. There is also potential for using a different criteria called PERCIST, using PET scans for assessing treatment response. These new methods will potentially enable more patients with metastatic ILC to be eligible for clinical trials.
A second key challenge in conducting clinical trials that include a metastatic ILC cohort is that it is frequently harder to find and enroll a sufficient number of patients with ILC. This is because of the relatively lower percentage of patients with ILC as compared to IDC. It is important for more lobular-specific and multicenter trials that include lobular cohorts to increase the numbers of lobular patients. Trials that measure treatment efficacy in ILC will in turn result in more clinical trials being open to patients with metastatic ILC.
Click on the LEARN MORE button below to see existing lobular-specific and lobular-enriched trials.
While genetic (or germline hereditary ) mutations in certain genes can increase the risk of developing breast cancer, tumors themselves can also acquire genomic mutations that can act as treatment targets. Hereditary mutations in CDH1 can confer a lifetime risk of both ILC and Hereditary Diffuse Gastric Cancer (HDGC). Patients with ILC can also have hereditary mutations in other genes including BRCA2, CHEK2, and PALB2. Currently there are treatments targeting BRCA mutations (PARP Inhibitors) available for patients with metastatic ILC.
Biomarker testing in tissue or liquid biopsy may be useful in identifying genomic mutations that have approved drugs or are being studied in clinical trials. Many ILC tumors harbor a genomic CDH1 mutation for which there is currently no targeted treatment. There are, however, other genomic mutations that are highly prevalent in lobular tumors, that do have targeted treatments or for which targeted treatments are being studied. For example, approximately 35-50% of lobular tumors harbor the PI3KCA mutation for which there is an approved targeted treatment; Alpelisib (Piqray) for ER+ metastatic patients. Approximately 5-15% of lobular tumors harbor ERBB2 mutations, which occur in the HER2 pathway. Neratinib (an approved drug for HER2+ breast cancers) is being studied for efficacy of treatment in Metastatic ER+ breast cancers with a lobular cohort in an ongoing clinical trial.
Biomarker testing may also be useful in determining anti-estrogen resistance such as the finding of ESR1 mutations, and other mutations such as RB1, which may confer resistance to CDK4/6 inhibitors. In other studies, ILC metastases are showing a higher TMB (tumor mutational burden) score relative to IDC. A TMB score is the number of mutations in a tumor and is used as a biomarker to help determine whether the tumor might respond to treatment with Immune Checkpoint Inhibitors (Immunotherapy).
Other genomic mutations that are prevalent in ILC including FOXA1, AKT1, PTEN, HER2, HER3, ATM, and FGFR mutations are currently being studied in the lab with the expectation that additional targets for treatment may emerge.
Because of the growing understanding about different biomarkers and what they may mean for future treatment for patients with metastatic ILC, it is increasingly common that biopsy of new metastatic sites, biomarker testing conducted either by tissue or liquid biopsy be considered. These tests are done with the hope that they will identify mutations for which there are currently targeted treatments or for which it is expected that there will be in the future.
Ann Camden has been living with metastatic breast cancer since 2016. She is the CEO of the Camden household which includes two rising senior girls, Rose and Grace, and her husband, Jeff … and potentially a new puppy. Ann maintains a blog, Down-Not-Out, where she shares her story with other cancer survivors as well as her family and friends. She is an alumna of Living Beyond Breast Cancer’s Hear My Voice Program and also a volunteer on their helpline. She has been an advocate with the American Cancer Society and Metavivor speaking with local and national legislators. Ann does not turn down an opportunity to talk about her cancer treatments and advocate for additional research dollars aimed toward better treatment options.
Natalia Padron was diagnosed with Stage 3A Breast Cancer in 2013 and MBC in 2015 when she was 48 years old. She is very passionate about helping others and advocating for the Latinx community to help them connect with reliable resources they need. As part of her advocacy with Living Beyond Breast Cancer, she volunteers on their helpline team to support Spanish-speaking patients struggling with the disease to better understand it and make informed decisions about their treatments and care. She operates Naty Wellness, a business dealing in handmade jewelry and natural soaps that are gentle on skin, something Natalia became interested in after noticing the effects of chemotherapy on her skin. Natalia lives in Florida with her three children, a dog, and two cats.
Jen Heatherly was diagnosed with early stage breast cancer in 2014 and received her MBC diagnosis in 2017. She is an active part of the MBC community and is passionate about helping other cancer patients thrive. She has attended numerous Susan G. Komen live events and lobular breast cancer breakout sessions to stay on top of her disease and to help better advocate for herself and others. In 2018, Jen participated in the Living Beyond Breast Cancer ad Hear My Voice advocacy program. In 2019, she was chosen as Leslie’s Week Woman of the Month. In June of 2021, part of her cancer journey book “TERMINAL…far from the shallow” was published.
Jen’s motto is to live life in color and minimize the grey moments, so quality of life is vital to her. She loves attending cancer retreats, yoga events, camps, and vacations, and actively posts about her cancer journey on her social media accounts. She uses this as an opportunity to raise funds for many cancer foundations, as well as to inspire and support others who are also fighting this disease.
Kris Blake went through six years of testing before receiving her Lobular Breast Cancer diagnosis. Her cancer was present during her first tests in 2013, but doctors and tests missed diagnosing until 2018. Because of that experience, she is passionate about advocating for MBC and Lobular Breast Cancer patients. Kris says, “If I can help one person to understand lobular breast cancer a little better, I would feel like I’ve made a contribution to this cause.”
"HERE ALL YEAR" MONTHLY TOPIC ARCHIVE
June 2021 | Caregivers and MBC
Caregiver is normally defined as the person who most often helps the person with cancer and is not paid to do so. In most cases, the main (primary) caregiver is a spouse, partner, parent, or an adult child. When family is not around, close friends, co-workers, or neighbors may fill this role. The caregiver has a key role in the patient’s care. Good, reliable caregiver support is crucial to the physical and emotional well-being of people with cancer. Given the importance of this role, we are dedicating the month of June to share information and resources that we hope will be helpful to caregivers.
Caregivers wear a lot of different hats. They serve as home health aides and companions. They may help feed, dress, and bathe the patient. Caregivers arrange schedules, manage insurance issues, and provide transportation. They are legal assistants, financial managers, and housekeepers. They often have to take over the duties of the person living with MBC, and still meet the needs of other family members.
You, as a caregiver, need to decide what your role will be – your level of participation in medical appointments and treatments, managing medications, etc. – in agreement with the patient. Collaborate, talk, listen!
It’s almost impossible to plan for a major health problem like metastatic breast cancer. Suddenly you’re responsible for the care of the person diagnosed with MBC, and you’re also needed to help make decisions about medical care and treatment. None of this is easy. There will be times when you know you’ve done well, and times when you just want to give up. This is normal.
Learn to accept help and focus on what you are able to provide. Set realistic goals. Seek social support – people in support groups understand what you may be going through. And, set personal health goals. If you don’t take care of yourself, how can you expect to successfully care for anyone else?
When making plans and starting important conversations, the most important focus should be on what the patient wants. It’s common for families to assume wishes and make decisions without consulting their loved ones because those conversations are uncomfortable. Approaching these conversations with love and confidence can help everyone feel supported — especially the patient. By putting the patient first, families are able to help them find closure, fulfill final wishes, and reassure them that they are supported.
There is so much to learn: what is MBC and how is it different from early stage breast cancer, what treatments are available, how do we maintain a good quality of life – including pain management, where are the support groups – for the caregiver as well as the patient, what other services are out there, including estate planning, and how do I access them? Resources are available, and the Alliance is a good place to start. Visit www.mbcalliance.org/our-members to learn who our members are and explore the many services they offer.
Fredric Rivers is a two-time survivor of cancer – both kidney and colon – as well as a liver transplant recipient. He is now the caregiver for his wife Jamil, who was diagnosed with Metastatic Breast Cancer in 2018. Ric and Jamil have actually both been caregivers, taking turns providing for each other as well as for their sons. They all appeared together on Good Morning America in April of 2019 where they shared their positive message and talked about the importance of family and the support they all provide and receive.
Linda Holden is an advocate for Male Breast Cancer and Metastatic Breast Cancer. Her husband Bob was diagnosed de novo in January 2003. She was Bob’s caregiver for seventeen years until Bob passed away on February 28, 2020. A graduate of the National Breast Cancer Coalition’s Project LEAD®, Linda is a passionate patient advocate, volunteering with the American Cancer Society as a Lead Legislative Ambassador, with Susan G. Komen as an ambassador, and with the Male Breast Cancer Coalition. She has met with her state representatives to lobby for cancer-related bills, using her voice to get legislators to pass bills for more money for research and other issues pertaining to cancer.
Allen Pannell‘s wife, Amy, passed away from MBC 7 years ago, after they were together for 3 years and married for 15 months. He has a doctorate of Philosophy in Business from the University of Tennessee and is an individual member of the Metastatic Breast Cancer Alliance. Having been inspired by losing someone to MBC and knowing how many breast cancer patients will eventually be diagnosed with MBC, Allen chose to join the Alliance to be part of the networking process to contribute to the MBCA’s goals. He is the Vice President and Treasurer of Breast Connect, Inc., and BreastConnect.org—dedicated to providing those impacted by breast cancer with a one-stop shop for resources.
May 2021 | Genetic and Biomarker Testing
Genetic testing for an inherited mutation (also called “germline genetic testing”) looks at DNA found in blood or saliva samples to find mutations that can cause diseases such as cancer. Genetic testing can help people understand their risk for cancer, help them make medical decisions, and take steps to lower their cancer risk or detect cancer early. For people already diagnosed with cancer, genetic testing can help people make medical decisions about how to best treat their cancer.
Biomarker testing is a way to look for genes, proteins, and other substances (called biomarkers or tumor markers) that can provide information about cancer. Each person’s cancer has a unique pattern of biomarkers. Some biomarkers affect how certain cancer treatments work. Biomarker testing may help you and your doctor choose a cancer treatment for you.
Genetic testing for hereditary cancer or inherited risk looks for genetic mutations you inherited from a parent that are present at birth. These mutations may increase your risk of multiple types of cancer.
For people diagnosed with cancer, biomarker testing looks at tumor tissue or blood to identify acquired genetic mutations. These mutations can measure risk for recurrence, aid in selection of treatment, or monitor response to treatment.
Research shows that a significant portion of MBC patients have harmful inherited genetic mutations that increase cancer risk. Hereditary cancers tend to occur at younger ages and are often more aggressive than sporadic cancers. People with hereditary cancers often have an increased risk of multiple types of cancer.
NCCN Guidelines* (pp. 20-22) recommend that all men and younger women diagnosed with breast cancer have genetic testing; women of any age with metastatic breast cancer may benefit from genetic counseling and testing to tailor their treatment.
Studies show that minority patients with breast cancer are 50% to 65% less likely than white patients to get genetic testing, even if it is free or covered by insurance.
In addition to the more well-known BRCA1 or BRCA2 genes and ER/PR expression, there are other genetic markers that have been linked to breast cancer: Her2neu overexpression, MSI-H or MMR-D, HRR or HRD, NTRK fusion, PDL1 expression, PIK3CA, Tumor Mutational Burden (TMB).
*Linked with permission from the NCCN Guidelines for Patients®: Metastatic Breast Cancer V.2020 © NCCN Foundation® 2020. All rights reserved. Last updated on August 31, 2020. To view the most recent and complete version of the guideline, go online to NCCN.org/patients. NCCN makes no warranties of any kind whatsoever regarding their content, use or application and disclaims any responsibility for their application or use in any way.
Abigail Johnston is a daughter, mother, wife, and attorney who was diagnosed with Stage IV Metastatic Breast Cancer in June of 2017. After her diagnosis, Abigail found her footing and started her blog “No Half Measures,” where she talks about whatever comes to mind within the lens of her Stage IV diagnosis. For Abigail, advocacy is a whole life endeavor and she never does anything halfway. Abigail works with Metavivor as a Peer-to-Peer Advocate, with Living Beyond Breast Cancer as a Hear My Voice Advocate and member of the Advisory Council for the 2020 Metastatic Conference, with After Breast Cancer Diagnosis (ABCD) as a mentor, with the 305PinkPack, where she and her dad moderate a support group for Stage IV patients. She started her own non-profit, Connect IV Legal Services, to recruit attorneys to do pro bono legal work for Stage IV metastatic breast cancer patients.
Felicia Johnson was diagnosed de novo Metastatic Breast Cancer in 2003, the catalyst to launch her into patient advocacy and the Cancer Ministry. She shares her own experience and that of her generational breast cancer history in an accessible and informative manner. She is an avid learner of the science of breast cancer as a layperson and likes to educate, instruct and disseminate cancer information to persons in her communities. Felicia received training from Project Lead and the National Breast Cancer Coalition, Breast Cancer Peer-to-Peer education through the American Cancer Society, Thomas Jefferson Hospital’s Cancer Buddy Program and Living Beyond Breast Cancer’s Hear My Voice Program. She volunteers with Living Beyond Breast Cancer as a board member, and other breast cancer organizations nationwide. Her heart’s desire is to be used to bring information to the cancer toolbox of others.
Gary Fields was diagnosed with metastatic breast cancer in September 2018 after undergoing treatment twice before for early-stage breast cancer. He married the love of his life, Michele, exactly one year after their first date; they have 4 children and will have been married for 35 years this November. He is a retired police officer with 16+ years in corrections and as a patrol officer, detective and crime prevention specialist. Since his diagnosis, he has been involved in patient advocacy and assists a former classmate with his charity, Cancer Kids and Christmas.
April 2021: Inflammatory Breast Cancer
Inflammatory breast cancer (IBC) is a rare and very aggressive disease in which cancer cells block lymph vessels in the skin of the breast. This type of breast cancer is called “inflammatory” because the breast often looks swollen and red, or inflamed. IBC is more difficult to diagnose than other types of breast cancer, and there is a lack of understanding of the disease… even among the medical community. Only increased awareness and education, and more research—including participation in clinical trials—can help improve outcomes and quality of life for IBC patients.
Since there is often no lump that can be felt during a physical exam or seen in a screening mammogram, inflammatory breast cancer can be difficult to diagnose. In addition, most women diagnosed with inflammatory breast cancer have dense breast tissue, which makes cancer detection in a screening mammogram more difficult.
IBC causes swelling and visible changes in the skin of the breast including redness and a dimpling of the skin called peau d’orange, which is French for the skin of an orange. Since these and other symptoms of IBC may also be signs of other diseases or conditions such as an infection or injury, women with inflammatory breast cancer often have a delayed diagnosis of the disease.
Inflammatory breast cancer is more common and diagnosed at younger ages in Black women than in white women. More research is needed to understand factors behind these racial disparities which might include awareness about the signs and symptoms of IBC among Black patients, biological and genetic differences, and delays in diagnosis and treatment.
Ongoing research will increase our understanding of how inflammatory breast cancer begins and progresses, and should enable the development of new treatments and more accurate prognoses for women diagnosed with this disease. Participating in a clinical trial is one way individuals can help make this happen.
Ginny Mason, BSN, RN, is the Executive Director of the Inflammatory Breast Cancer Research Foundation (ibcRF), a member of the Alliance and grass-roots organization dedicated to improving the lives of those touched by inflammatory breast cancer (IBC) through the power of action and advocacy. This is done by fostering innovative IBC research, educating stakeholders, and advocating for both patients and survivors. Ginny has served in a number of research advocacy positions in her lifetime and continues to serve on advisory boards and as a Komen Advocate in Science. Ginny helped develop and implement the IBC Research Foundation BioBank and Clinical Data Base project in 2005. Ginny continues to manage patient enrollment, working with researchers and the Medical Advisory Board. She has spent close to 20 years since her diagnosis using her voice to advocate for breast cancer and metastatic breast cancer patients.
“I know they say October is breast cancer awareness month, but for those of us with metastatic disease, that’s every month. Our cancer is here all year.” Jennifer Cordts was diagnosed with stage IV Inflammatory Breast Cancer in November 2015. A mother of two daughters, Jennifer is also a Board member of the Inflammatory Breast Cancer Research Foundation, she runs a support group at Baylor Hospital, volunteers for Meals on Wheels and is a breast cancer advocate.
Jasmine Jeffries was diagnosed in 2019 with stage IV Inflammatory Breast Cancer ER, PR positive HER2 negative with metastases to her vertebrae. While the cancer diagnosis was one of the biggest blows Jasmine has ever felt, she didn’t let it stop her. Through this journey Jasmine has begun to advocate for women with Metastatic Breast Cancer. She became an Angel advocate with the Tigerlily Foundation, focusing on ending disparities among African American women and becoming knowledgeable about MBC and using her voice to educate others. She lives a life that exemplifies her faith in God and has a strong foundation that she relies on every day of her life. Jasmine enjoys singing, traveling, hanging out with family and friends, but most importantly being in great company enjoying life and every moment.
Janice Choe is a community advocate representing the Asian-Pacific Islander community and lives in Foster City, California. She was part of the advocate team that helped establish MD Anderson Cancer Center’s Advanced Breast Cancer Clinic, which provides metastatic breast cancer patients with personalized treatments. Janice is an active patient advocate with MD Anderson, SWOG, and Susan G. Komen. A certified yoga instructor, she teaches restorative yoga for cancer patients and caregivers. Janice is a stage IV Inflammatory Breast Cancer thriver since 2011.
March 2021: Clinical Trials 101
Clinical trials are essential to breast cancer research and treatment; the treatments breast cancer patients receive today were developed in clinical trials. Yet fewer than 5% of adult cancer patients participate in this critical step in the research process. We’re exploring why that is, and what can be done to demystify clinical trials and address some of the barriers preventing patients from participating.
JOIN MBC CONNECT™
The MBC Alliance’s interactive, web and
mobile-friendly patient experience registry!
You can help accelerate metastatic breast cancer research and get potential matches with clinical trials. Based on information you enter, you’ll receive potential clinical trial matches, personalized insights and alerts with MBC news and events.
Clinical trials enroll volunteers to study new treatments as well as new ways of preventing cancer, diagnosing cancer, managing side effects, or improving quality of life. Every clinical trial is designed with patient safety as the top priority. Learning terms associated with clinical trials, how to find a clinical trial, and questions to ask your doctor and the clinical trial’s research team can help you decide if a clinical trial is right for you.
There are several reasons that contribute to this poor rate of participation by adults, one of which is that information about trials can be hard to find, and understand. That’s why we’re dedicating this month to learning the facts about clinical trials, and how to find them. Click here for an in-depth explanation on what clinical trials are, and how to join one.
In cancer clinical trials from 2008 to 2018, only 3% of participants were Black, but Black women are more likely to die of breast cancer than any other demographic. Nearly one-third of Black women have indicated that they feel the medical community cannot be trusted, compared to 4% of white women. Patient advocates like Sheila McGlown are working to change that by demystifying clinical trials for Black women.
There are many reasons why 95% of adult cancer patients don’t participate in clinical trials. Exclusion criteria, while necessary, can be overly restrictive. There can be a financial burden because Medicaid does not cover clinical trial participation, or there may not be clinical trials easily accessible to patients in their area. Click the Learn More button to better understand these barriers, and what can be done to address them.
Christine Hodgdon was diagnosed with de novo metastatic breast cancer in 2015, at the age of 34. She is a patient advocate member of the Metastatic Breast Cancer Alliance and leads their Breast Cancer Brain Metastasis Initiative with the goal to address the unmet research needs of breast cancer patients living with central nervous system metastasis. Important to any of the initiatives with which Christine is involved is ensuring that health disparities and inequities are addressed, especially in underserved and vulnerable populations that are disproportionately impacted by breast cancer. She launched her website, TheStormRiders.org, which provides a searchable clinical trial database to make it easier for patients to find clinical trials. She is also a co-founder of GRASP – Guiding Researchers & Advocates to Scientific Partnerships, a program to empower patients and researchers to exchange ideas and learn from each other.
Deborah Collyar was diagnosed with early stage breast cancer at the age of 32, and she has been a leader in patient engagement and advocacy since that first diagnosis. She utilizes her business leadership, IT, and communication skills to bridge research gaps between scientists, medical providers, and patients. She founded the Patient Advocates in Research (PAIR) international network in 1996, “where research meets reality” and consults with the health and medical research communities. Her work encompasses many diseases, programs and policies at grassroots, national and international levels, and emphasizes patient issues throughout early development and protocols, recruitment, retention, and results reporting. Deborah encourages innovation in clinical trials and healthcare delivery and has been a key member in pivotal projects with, among others, the US NIH, ASCO, AACR, and the Oncology Research Information Exchange Network (ORIEN). She is a speaker, blogger, author, grant team member, trainer—including this presentation to the MBC Alliance—and faculty at professional workshops where she presents the patient perspective. She and her husband have survived 3+ cancers, and they work with multiple communities and patients.
Ricki Fairley is a Stage 3A Triple Negative Breast Cancer Survivor/Thriver. She brings her passion, marketing experience, and early stage BC lived experience to the MBC advocacy world. She co-founded TOUCH, The Black Breast Cancer Alliance to address Black Breast Cancer as a unique and special disease state, with the overall goal of reducing the mortality rate for Black women. TOUCH recently joined the Alliance as its newest non-profit member. Ricki founded and co-hosts “The Doctor Is In,” a weekly live web series on the BlackDoctor.org Facebook page. She is also a founding member of the collaboration #BlackDataMatters with Breastcancer.org, Ciitizen, Center for Healthcare Innovation, Morehouse School of Medicine and Susan G. Komen to encourage and elevate the importance of Black women participating in clinical trial research.
Sheila McGlown was diagnosed with de novo metastatic breast cancer in December 2009, at the age of 43. She is a patient advocate leader, Department of Defense Breast Cancer Research Program Advocate, a volunteer for the Living Beyond Breast Cancer Helpline, and a 2020/2021 Portrait of Hope Ambassador for the St. Louis American Cancer Society. She works with a wide range of researchers, medical professionals and community leaders engaging and collaborating to make an impact. Sheila is on a mission to use her platform as a Black woman to empower and support women and men diagnosed with breast cancer by sharing the useful tools and techniques she applied to navigate through her cancer journey, including participation in clinical trials.
February 2021: Educating and Raising Awareness of MBC in Black Women
This month, we’re raising awareness about Metastatic Breast Cancer in Black women and the way this disease disproportionately affects women of color. Black women are more likely to be diagnosed with and die from MBC than white women. We’re raising awareness about this disparity by sharing the stories of four Black women living with MBC and circulating infographics that bring attention to the stark difference in health outcomes between Black and white women with MBC.
Social determinants of health contribute to worse health outcomes for Black Americans, but studies in clinical trials suggest genetics may also contribute to the increased mortality rates. A recent study of 35 phase III clinical trials found that Black Americans with prostate and breast cancer had worse outcomes than their white counterparts, despite clinical trial treatment being standardized to follow protocol.
According to 2017 CDC data, Black women are more likely to die of breast cancer than any other demographic, due to a combination of factors including systemic bias and less accessibility to affordable preventative care and treatment. Black women are also more likely to have aggressive forms of cancer.
About 15-20% of breast cancers in the US are triple negative breast cancer (TNBC). While anyone can get TNBC, it’s more likely to develop in younger women and Black women. The good news is that chemotherapy appears to be equally effective for Black and white women.
Jamil Rivers was diagnosed with de novo metastatic breast cancer at age 39. She is a Young Advocate Alum and Board Member of Living Beyond Breast Cancer and the Board President of METAvivor. She is also a patient advocate member of the Metastatic Breast Cancer Alliance and does patient advocacy work with Susan G. Komen. She recently launched The Chrysalis Initiative which provides mentoring, education and resource navigation to women with breast cancer, engages in outreach and education for Black women to assess their breast cancer risk, and training and technology for healthcare professionals to reduce the prevalence of disparities in breast cancer care.
In July 2015, Stephanie Walker was diagnosed with de novo metastatic breast cancer. She is a registered nurse with close to 40 years of clinical practice and secondary teaching experience. Stephanie is a patient advocate member of the Metastatic Breast Cancer Alliance, Living Beyond Breast Cancer volunteer, Komen volunteer, recipient of the Spirit to Impact award, and member of multiple other non-profit organizations. Her advocacy work began in 2018 when she attended her first national breast cancer event, Living Beyond Breast Cancer’s Conference on Metastatic Breast Cancer. Stephanie keeps busy advocating for men and women living with MBC in rural areas — including where she lives now in the Southeast — and for equal access to quality healthcare, treatment modalities, and resources.
January 2021: Molecular Subtypes of MBC
Not all breast cancers are the same! It is important to understand what type of metastatic breast cancer you have and how it differs from other types of breast cancer. Once you’ve been diagnosed with breast cancer, your doctor will review your pathology report and the results of any imaging tests to understand the specifics of your tumor. Using a tissue sample from your breast biopsy or using your tumor if you’ve already undergone surgery, your medical team determines your breast cancer type. This information helps your doctor decide which treatment options are most appropriate for you. (Source: The Mayo Clinic — http://mbca.me/MBC-MAYO)
*Linked with permission from the NCCN Guidelines for Patients®: Metastatic Breast Cancer V.2020 © NCCN Foundation® 2020. All rights reserved. Last updated on August 31, 2020. To view the most recent and complete version of the guideline, go online to NCCN.org/patients. NCCN makes no warranties of any kind whatsoever regarding their content, use or application and disclaims any responsibility for their application or use in any way.
Instructional animations that further explain HER2+ MBC (NCCN Patient Animation: HER2+ Metastatic Breast Cancer & NCCN Patient Animation: Targeted Therapies for HER2+ Metastatic Breast Cancer) are available at this link.
If your cancer is hormone receptor positive (HR+), you can be either estrogen receptor-positive (ER+), progesterone receptor-positive (PR+) or both. It means the cancer grows in response to these hormones. Treatments for these subtypes work to lower the amount of these hormones in your body. Other molecular subtypes include HER2+ (human epidermal growth factor receptor 2), TNBC (triple negative: ER-, PR- & HER2-), and Triple Positive (ER+/PR+/HER2+).
If you have been diagnosed with metastatic breast cancer after being treated for early-stage breast cancer, your doctor may want to repeat the tests to see if the tumor’s cells have changed in any way. These tests will help your doctor learn more about the cancer and choose the most effective treatment plan.
In addition to changes in molecular subtypes between an early-stage breast cancer diagnosis and a metastatic diagnosis, your subtype may change if you experience a later progression or new site of metastasis. A new biopsy is a good idea when your doctor discovers a progression in order to help you decide if a change in treatment might be necessary.
Lesley Glenn was diagnosed with invasive ductal carcinoma, ER/PR+, HER2-, with mets to her bones in November 2012, at the age of 47. Lesley is a native Hawaiian—born and raised—and now lives in Southern Oregon with her husband of 29 years and their 2 rescue pups. She has been an active advocate within the MBC community for the past 6 years and is the co-founder of the annual Climb for a Cure (www.climbforacure.net) and is currently working on a new survivorship wellness platform called Project Life (www.projectlifembc.com) to be released in the spring of 2021.iLesley is passionate about the healing capacity of hiking in nature, therapeutic art, mindfulness and travel.
Victoria Goldberg has been living with MBC since January 2014. She is triple positive with HER2/PR/ER receptors She had been originally diagnosed with early-stage cancer in 2005; and in January 2014, a CT scan showed that her cancer had returned and had spread to her liver and bones. Victoria had an exceptionally good response to her treatments and physically recovered pretty quickly. Before MBC, a big part of her life and how she defined herself had been her career. The side effects of the treatment forced her to stop working earlier than she had planned. Patient advocacy like volunteering with SHARE gives her that missing structure and purpose. It feels “right.” She is a founder of TalkMets, a dedicated helpline for women living with MBC and is a support group facilitator. In July 2020, Victoria joined the team behind the Our MBC Life podcast. She is a producer and is trying her hand at sound editing, graphic design, and co-hosting. She is also an editor and writer of the Our MBC Life blog.
December 2020: Metastatic Breast Cancer in Men
Breast cancer in men is rare—occurring much less often than breast cancer in women—but the diseases are similar in many ways. Men carry a higher mortality than women, primarily due to a lack of awareness among men who are less likely to assume a lump is breast cancer, which can cause a delay in seeking treatment. Share the facts and videos available here to help raise awareness. As MBC Alliance member, The Male Breast Cancer Coalition, always says, “Men have breasts, too!”
Males have historically been excluded from clinical trials of breast cancer drugs which has resulted in limited FDA-approved treatment options for males with breast cancer. Clinical management of male breast cancer is generally based on clinical experience with breast cancer in females and data from studies conducted in females with breast cancer. The FDA now recommends that clinical trials of breast cancer drugs allow for inclusion of both males and females.
This year, an estimated 2,620 men in the United States will be diagnosed with breast cancer. Black men have the highest incidence rates and typically have a lower chance of survival. Individual survival rates depend on different factors, including the stage of the disease when it is first diagnosed. While the 5-year survival rate of men with breast cancer is 96%, if the cancer has spread to a distant part of the body (metastatic/StageIV), the 5-year survival rate is 22%.
About 1 out of 5 men who develop breast cancer has a family history of the disease. These men may have inherited a mutation in the BRCA1 or BRCA2 genes or other genes, which can increase risk for breast cancer and are also linked to other cancers. Male patients diagnosed with breast cancer should be counseled about genetic testing for their own health and for the health of their families.
This is Antonio Venturini from Johannesburg, South Africa. An inverted nipple was a sign of concern for him, but it took his wife “deceiving” him into going to a GP for a mole on his back. Being diagnosed initially with stage 3 breast cancer at the age of 39 made his head spin. Now with a metastatic diagnosis, listen to his story—Antonio is Here All Year!
Meet Ambrose Kirkland from Tallahassee, Florida. Ambrose was first diagnosed on November 1, 2001. He also found out he was positive for the MRE11A and the NBN gene mutations. Ambrose also has thyroid cancer and is currently being tested for a mass on his kidney. Ambrose wants everyone to know, he is Here All Year!
Eric Pieszala recalls hearing about a Monsignor in elementary school who had breast cancer but never imagined saying those words himself. What he thought was a cyst actually changed his life forever. Diagnosed with MBC in 2019, Eric urges men to get anything out of the ordinary checked out by their doctors. He also wants people to know he is Here All Year!
November 2020: Breast Cancer Brain Metastasis
When breast cancers spreads from the breast to other parts of the body, it is termed “metastatic”. The most common sites of spread in breast cancer are the bones, liver, lungs, and brain. At a metastatic diagnosis, doctors commonly scan the body for signs of spread, but most patients do not receive a brain scan unless they have symptoms like a numbness, or headaches. This month, the Metastatic Breast Cancer (MBC) Alliance is focusing on breast cancer brain metastasis. The incidence of brain metastasis is growing as new therapies help patients live longer with MBC. As in all things MBC, we need more research, earlier screening, and scientific breakthroughs. For a patient living with breast cancer brain mets, the need for research is enormous and HERE ALL YEAR.
Across all breast cancer subtypes, approximately 10%-15% of those with metastatic breast cancer develop brain metastases. This rate is as high as 30% for those with metastatic human epidermal growth factor receptor 2 (HER2)-positive disease, and as high as 50% for patients with metastatic triple negative breast cancer (TNBC).
Current estimates are that up to 15% of breast cancer patients will develop brain metastasis, but this incidence is expected to climb as patients live longer with metastatic disease due to improved systemic therapies, better imaging and earlier detection.
Historically the median survival of patients with breast cancer brain metastases was very poor, ranging from 3-6 months. But with new targeted treatments, overall survival across all MBC subtypes is now closer to 2+ years. HER2+ MBC has seen the biggest treatment advances of all subtypes with a median life expectancy of 3 years.
Just two years after her early stage diagnosis of triple negative breast cancer, Chawnté Randall learned she had progressed to metastatic disease in 2019. Chawnté has become a strong advocate for young Black woman living with MBC. Black women are 40% more likely to die from MBC due in part to disproportionate representation in clinical trials. Hear more about Chawnté’s advocacy in brain mets research.
Lynda Weatherby went from a Stage 0 DCIS & bilateral mastectomy in 2001 to a recurrence & Stage IV MBC diagnosis 12 years later, with metastases all through her bones, to her brain, and a facial nerve. Hear how Lynda has managed her brain mets treatments and advocates for more breast cancer brain mets research today.
October 2020: Educating and Raising Awareness of MBC
During the month of October we featured basic information about metastatic breast cancer (MBC) to help you learn more about the disease so you can help us spread the word. The MBC Alliance strives to ensure that all metastatic breast cancer patients and their caregivers know how to and are able to access the care and services they need from a responsive and well-informed healthcare system. We are doing that by working to build understanding of MBC and how it differs from early stage breast cancer among those diagnosed—as well as their families, health care providers, researchers, and health policy makers and influencers.
Although metastatic breast cancer has spread to another part of the body, it’s still breast cancer and treated as breast cancer.
Did you know that about 6-10% of breast cancer patients are initially diagnosed at stage IV? This is called “de novo”—from the beginning—metastatic disease.
Katherine O’Brien is one of those patients who received a de novo MBC diagnosis, and she has been living with MBC for 12 years. Here’s her perspective on navigating Breast Cancer Awareness Month as an MBC patient. She’s “Here All Year!“
Lisa Laudico also received a de novo MBC diagnosis. Listen to her talk about her experiences of living with MBC for the last 3 years and how becoming an advocate for others has helped her find meaning and purpose in the face of this illness.