Here All Year!

October WAS 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.

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.

"HERE ALL YEAR" MONTHLY TOPIC ARCHIVE

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 CancerNCCN 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. 

We don’t know the exact number since current U.S. registries only track de novo diagnoses. We are working to change that! 

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.