News > Beyond the headlines: March 2023

Beyond the headlines: March 2023

LBBC’s views on breast cancer news

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Here in Philadelphia, the crocuses and daffodils are blooming, emerging from their winter slumber to remind us that it is possible to persist in our advocacy, no matter how cold the winter.

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This month’s column focuses on the diverse ways disparities influence the way we treat and understand breast cancer, whether because of menopausal status, sex and gender identity, or ability to afford treatment. We’ll also delve into new FDA guidance that affects breast cancer screening. At LBBC, we will never stop advocating for each and every one of you until we’ve created the just and equitable world we believe is possible. Read on to learn what’s motivating us this month.

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Insurance should cover screenings for high breast density

In early March the FDA released new guidance requiring mammography centers to inform those getting mammograms whether they have dense breasts, a risk factor for breast cancer. This national guideline will stitch together the patchwork of laws that now exist in 38 states requiring mammographers to inform about breast density but which differ in how that information is delivered. The law goes into effect in 2024.

High breast density remains a complex risk factor, and it’s not always clear what to do when you have it. National Comprehensive Cancer Network says you should talk with your doctor about the risks and benefits of additional breast screening like ultrasound and MRI, but those tests may not be covered by insurance. With FDA’s new guidance, LBBC is advocating that payers cover the costs of indicated tests. In the meantime, if a doctor said you have dense breasts, make sure to report your personal and family history of cancer, discuss a screening plan, and ask your doctor to advocate for coverage of needed tests. You can support others by helping them understand they should report to their doctors what they know, or don’t know, about their breast density.

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We support the new FDA requirement, which will ensure that all women receiving mammograms are told about their breast density status. But if you live in one of the 38 states already requiring this notice, you may know that it’s not always clear what you should do after learning you have dense breasts.

Jean Sachs, CEO of Living Beyond Breast Cancer

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Protecting breast reconstruction choices

Our CEO Jean Sachs continues to advocate for a swift reversal of the decision by the US Centers for Medicaid and Medicare Services (CMS) to pool tissue-based breast reconstruction surgeries like DIEP flap under a single billing code. Hundreds joined us in signing a petition demanding CMS reinstate the original code, with the goal of ensuring access to DIEP flap nationwide. Check out Jean’s interview with WHYY, the Philadelphia-area PBS affiliate.

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Young women balance treatments & side effects

Reports from two seminal studies got us closer to answers about which anti-estrogen treatments work best at preventing recurrence in premenopausal women with hormone receptor-positive breast cancer. Long-term follow-up from the SOFT and TEXT clinical trials showed the aromatase inhibitor exemestane (Aromasin), coupled with ovarian suppression, protected more women from recurrence than when suppression was given with tamoxifen. Not surprisingly, those who took the aromatase inhibitor were challenged by its side effects: joint pain, bone loss, and vaginal dryness. That’s why conversations about side effects are critical; a treatment is only as effective as your ability to take it. Your doctor can help you evaluate your specific risks for recurrence and the possible impacts on your life.

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Endocrine therapy comes with a buffet of side effects — but the best side effect is keeping cancer away, so I’ll take it.

Clea Shearer, on Today.com

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Good news, and bad, on financial toxicity

A study showing most women with breast cancer face financial side effects was no surprise to us, as the number of calls for financial assistance to our Breast Cancer Helpline has more than doubled since 2020. Among cancers, breast is the most expensive to have, and the fractured U.S. healthcare system contributes to inequities at every level of care. The researchers offered recommendations that included expanding insurance coverage. That bore itself out in a study of Southern states that showed those that took up Medicaid expansion increased the number of insured people and access to treatment, lessening the number of distant-stage diseases at diagnosis. LBBC will continue to advocate for greater access to care, while also supplying you with financial assistance, resources, and strategies, so you can get the care you deserve.

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My savings account depleted, and I accumulated a significant financial burden before I received some help and support.

Patrice Exantus, in LBBC’s blog

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Sex & gender minorities diagnosed later with breast cancer

It’s challenging to get policymakers to allocate resources toward fixing a problem when they don’t understand the scope of it. That’s why LBBC consistently advocates for collecting data about stage IV breast cancer and now, about breast cancer in LGBTQ+ people. We just launched a survey with Facing Our Risk of Cancer Empowered (FORCE) to better understand how health organizations collect information about people who are transgender, nonbinary, or gender diverse. A small study shows just how important this data is–it found that sex and gender minority people had delayed breast cancer diagnoses and recurrences at three times the rate of cisgender heterosexual people. In the absence of more data, we will share stories that humanize the experiences of LGBTQ+ people.

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From [my] experiences, I came to understand that our health care apparatus is primarily designed by and for cisgender heterosexual people.

Erik Eckhert, MD, MS, in Healio

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(Our) people are talking

LBBC joined the American Cancer Society’s National Breast Cancer Roundtable, where Jean Sachs will represent us on this national coalition to accelerate progress through equity and innovation. Jean has been busy; she recently appeared on a Trailblazer episode of SHARE’s Our MBC Life podcast, discussing LBBC’s history of serving people with metastatic breast cancer. Also on the podcast: Hear My Voice grads Terlisa Sheppard and Stephanie Walker, who shared the impact LBBC’s Conference on Metastatic Breast Cancer has had on their lives. The 2023 conference is only a few weeks away, and we’re so excited to offer it both in Philly and online. For many, nothing can replicate the feeling of stepping into a room with 500 individuals who, like them, are facing MBC. But whether attending physically or virtually, it is in the sharing of stories, experiences, advocacy, and resources that we create the collective impact we call community.

Kudos to medical advisory board member Ginger Borges, MD, MMSc, and LBBC staff member Shehzin Tietjen, who spoke with Giddy about the POSITIVE trial. Shehzin shared her story of interrupting hormonal therapy to have a baby (and a very cute one, I might add!).

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Thank you to consulting medical editor Claire Nixon for her assistance with the column.

We invite you to suggest items for next month or tell us how we’re doing by emailing us at online@lbbc.org.

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About this page
Glossary
About LBBC

Janine E. Guglielmino, MA

  • Worked at LBBC 2001-2023

  • Believes in the power of shared stories to build connection and illuminate the realities of complex life experiences

  • Is an empath, writer, and cancer and mental health advocate who gains strength from the natural world

Reviewed and updated: March 30, 2023

Reviewed by: Regina Hampton, MD, FACS , Don S. Dizon, MD, FACP, FASCO

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Living Beyond Breast Cancer is a national nonprofit organization that seeks to create a world that understands there is more than one way to have breast cancer. To fulfill its mission of providing trusted information and a community of support to those impacted by the disease, Living Beyond Breast Cancer offers on-demand emotional, practical, and evidence-based content. For over 30 years, the organization has remained committed to creating a culture of acceptance — where sharing the diversity of the lived experience of breast cancer fosters self-advocacy and hope. For more information, learn more about our programs and services.