News > Beyond the headlines: February 2023

Beyond the headlines: February 2023

LBBC’s views on breast cancer news

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I am prone to the winter blues, but the news coming across my desk this month has kept me motivated and inspired.

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Thanks to consistent, ongoing pressure from breast cancer advocates and organizations like LBBC who support them, we’re starting to see real change to improve clinical trial diversity and address the side effects that deeply impact the lives of our community members. I’m encouraged as well to see new FDA drug approvals that will, I hope, increase the quantity and quality of life of my friends living with metastatic breast cancer. Read on to learn more news that’s inspiring me—and hopefully you—this month.

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On this page

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Moving health equity from talk to action

Breast cancer research is finally starting to look more diverse. On Feb. 4, World Cancer Day, the National Comprehensive Cancer Network re-issued its Health Equity Report Card, a tool to help health care systems further their efforts to offer equitable treatment. The report card includes a recommendation LBBC has long pushed for: ensuring FDA considers clinical trial diversity in the drug approval process. Last week the agency announced it will start requiring a diversity plan for late-stage clinical trials, a key step to ensure the research that leads to drug approvals reflects the makeup of those who receive the drugs in clinic.

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This is the biggest change in the regulatory landscape for clinical-trial diversity in the last three decades.

Thomas J. Hwang, MD, in Nature

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Clinical trial diversity was among the issues discussed in December at the Black Wo(men) Speak Symposium, a program of the Metastatic Breast Cancer Alliance. Videos are available to view now and feature actions we can take individually and collectively to improve outcomes.

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New approvals in mets

I’m always excited to see new drug approvals in metastatic breast cancer. The FDA recently approved elacestrant (Orserdu), the first selective estrogen receptor degrader or SERD pill for hormone receptor-positive, HER2-negative MBC with an ESR1 mutation. Two drugs got expanded indications: The CDK inhibitor palbociclib (Ibrance) is now available regardless of menopausal status, and sacituzumab govitecan (Trodelvy) can be given for HR+/HER2- cancer.

Also, the National Comprehensive Cancer Center said doctors could consider neratinib (Nerlynx) for MBC that is HER2 mutated—not necessarily positive—and olaparib (Lynparza) for some cancers that have BRCA mutations in the tumor, meaning mutations exist in the cancer and were not inherited from a parent. These guidelines are based on clinical trials, not FDA approvals, so check your insurance coverage if your doctors suggest these uses.

These developments highlight the growing importance of tumor biomarker, or genomic, testing in MBC so doctors can know when the cancer is most likely to respond to treatments. We’ll delve into these key topics during our 2023 hybrid Conference on Metastatic Breast Cancer, for which registration just opened.

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Less or more in early breast cancer?

Recent research focuses on so-called “treatment de-escalation,” an awful term for the effort to find treatments with the greatest effect on outcomes with the fewest side effects. A review released this month showed no significant differences in overall or cancer-free survival at 5 and 10 years between people who had whole breast radiation and those who had partial breast radiation.

Meanwhile, researchers are trying to determine which people with high-risk hormone receptor-positive early breast cancer should take more treatment in the form of the CDK inhibitor abemaciclib (Verzenio); one of the tests used to identify the best candidates can be tough to interpret. It’s vital that we determine who benefits most from treatment to save people from the side effects—and the costs—of these agents.

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The flap over DIEP continues

Working alongside our colleagues and patient advocates on the Community Breast Reconstruction Alliance, LBBC continues to pressure the Centers for Medicaid and Medicare Services (CMS) to reverse its decision to pool tissue-based breast reconstruction procedures under a single medical billing code. We are hearing more reports of people being asked to pay out-of-pocket for DIEP flap, or not being offered the surgery when it typically would be. We want to hear about what you’re experiencing; check our blog in the next weeks for people’s stories.

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Combating long-term side effects

After more than two decades at LBBC, I’m no longer surprised to hear breast cancer referred to as “the gift that keeps on giving” because of its lingering side effects. For those reporting them, two recent studies may feel validating. The first found a significantly increased risk of congestive heart failure up to 20 years after treatment in those who took an anthracycline-based chemo like Adriamycin. And a small French study showed participants had problems with thinking and memory—chemobrain—up to two years after diagnosis. (Symptoms improved afterward.) While it’s vital for doctors to communicate about the risks and benefits of therapy, we must insist on better, less toxic treatments that allow people to live well beyond breast cancer, not just live.

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(Our) people are talking

We can’t understand the realities of breast cancer unless we have the hard conversations. I am proud of LBBC Young Advocate Deb Ontiveros for blogging about how her mental health influenced her approach to her metastatic breast cancer diagnosis, as well as the importance of seeking support that resonates with your unique emotional history. Cheers to fellow graduate Kerri Anne Besse, who was profiled in her hometown newspaper for directing her artistic talents into The Cancer Calendar, a tool she created to help people organize their treatment schedules while finding joy and beauty along the way.

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I’m not into the legislative side (of medicine), that doesn't resonate with me, but what does is creating art. When you get diagnosed, you think a lot about legacy, what you're going to leave behind. I thought this could be my living legacy.

Kerri Anne Besse, in the Arkansas Democrat Gazette

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The Philly area has had an uncharacteristically warm winter, but even if you’re knee deep in snow, you’ll find value in reading Ann Camden’s blog about the daffodil. A graduate of our Hear My Voice program, Ann beautifully connects these early spring bloomers to resilience, perseverance, and living with metastatic breast cancer.

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It was an act of faith to plant those bulbs … to believe, no matter what the scans showed or how fatigued my body felt … that I’d weather the winter and be here to admire the many different colors of the blooms.

Ann Camden, in Down. Not Out!

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Thank you to consulting medical editor Claire Nixon for her guidance with this month’s column.

Suggest items to be included next month or tell us how we’re doing by emailing 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: February 22, 2023

Reviewed by: Saveri Bhattacharya, DO , Neil K. Taunk, MD, MSCTS

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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.