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mdtalk Episode 15: Be your own advocate for breast cancer

By October 19, 2023No Comments

Through the mdtalk podcast and video series, we’re on a mission to highlight the most critical issues impacting clinical research, the patient experience, and the future of healthcare.

Listen to the episode here or search for mdtalk wherever you get your podcasts.

Episode Summary

To mark Breast Cancer Awareness Month, we are joined in this moving and potentially life-saving mdtalk by Sheila Mikhail, Executive Director of Columbus Children’s Foundation and Co-Founder and Advisor at Ask Bio.

Sheila is a Lawyer, Business Leader, and Philanthropist. She received her Doctor of Law in Business Commerce from Northwestern University Pritzker School of Law in 1997. She has been featured in the Medicine Maker 2023 Power List, and, among many other accolades, was selected as EY Entrepreneur of the Year by Ernest & Young in Nov 2021.

Sheila received a breast cancer diagnosis and after experiencing life-changing health inequality and an extraordinarily difficult journey to diagnosis and appropriate treatment, Sheila focused her efforts on philanthropy and advocacy by founding BC-Ruckus.

BC-Ruckus seeks to increase awareness of breast cancer screening and diagnosis, as well as to campaign for equal access to potentially life-saving screenings that are not currently available to many in the US.

Some shocking statistics to start the conversation:

There is much to discuss around these statistics, and as sobering as these figures are, more so is the reality that breast cancer survival is not a level playing field.

Sheila’s story

“In 2022, I became concerned about some dimpling on one of my breasts. Even though I had been diligently attending 10 years of annual physical examinations and regular mammograms to keep on top of my physical health, I felt something was wrong and pursued a course of additional screening.

In the face of months of dismissal by the medical profession, I repeatedly insisted on alternative imaging, which revealed a diagnosis of bilateral breast cancer and 6cm of malignant tumors in my breasts. I had breast cancer that repeated 3D or diagnostic mammograms had missed due to my dense breast tissue. I found my cancer “in a nick of time” – before it had metastasized and underwent a successful double lumpectomy and a round of brutal radiotherapy.

The standard care pathway offered to women in the US does not work for the 40% – 50% of women with dense breast tissue. Dense breast tissue on a mammogram is white. Cancer also appears white on a mammogram. Therefore, the more dense tissue you have, the more difficult it is for the mammogram to find the cancer. In addition, the more dense your breast tissue is, the higher your risk of breast cancer in the first place.

Be your own advocate…:

“Unfortunately, we cannot assume that our doctors and healthcare professionals have the understanding, time, and patience to give us the care we deserve.

…For diagnosis

“Our doctors and healthcare professionals are overworked and overburdened. They’re tired and under enormous pressure from patients who expect daily miracles. We are one of the many patients they see every day – but for us, we are the center of our own story. It’s our own life and death scenarios we are living out, so advocate yourself and ensure you are getting the best possible attention to ensure your diagnosis is fast, effective, and conclusive.

My Density Matters is a great resource to support conversations with your doctor around screening options and understand the roadblocks you may experience during the process. It also helps you understand what is covered by your healthcare provider and what self-pay options are available should you want to pursue additional imaging other than the mammography pathway offered as standard.

For treatment

“Do your research. Always look to the facts.

I discovered the double mastectomy I was being recommended only had a 2 – 3% better survival rate than opting for a double lumpectomy. Moreover, it was a much more invasive and brutal process, with sometimes up to two to three surgeries and nine months to recover.

I sought a second, third, and fourth opinion on how to treat my breast cancer post-diagnosis. I met with multiple surgeons before deciding on the surgeon to take me into theatre, who agreed that a lumpectomy was the right course of action to pursue.

The first option you are given is not the only one available. Never settle. Be the hero of your own story.

Advocate others

“In March of 2023, the FDA published a rule stating that mammogram reports sent to patients must include breast density, which should be described as either “not dense” or “dense.” At the very least, with this knowledge of our bodies, we can better interrogate whether standard mammography care pathways are the right solution for us individually. But being told about the density of your beast tissue doesn’t automatically mean you would know what to do or where to look for support.

Until there is equity in breast cancer screening and treatment, as well as advocating for ourselves, we must advocate for others.

Talk to your mothers, sisters, daughters, and friends

“If 1 in 8 women will receive a breast cancer diagnosis in their lifetime, chances are you will know someone – or be that patient yourself. Share resources about breast cancer awareness and density, learn how to examine your breasts, and don’t take no for an answer if you think something is wrong. Your tenacity could make a life-or-death difference.

Legislation has also been introduced in Congress (HR3086) by Representatives Rosa DeLauro (CT-03) and Brian Fitzpatrick (PA-01), along with award-winning journalist Katie Couric, called the Find It Early Act. So, as well as being a voice within your community, you can also participate in the national conversation.

This Bill would require all health insurance plans to cover supplemental screening and diagnostic mammograms for women at increased risk for developing breast cancer, including those having dense breasts, with no cost-sharing (co-payment or deductible).

Presently, 21 states, plus DC, have passed similar laws for expanded insurance coverage of breast imaging after mammography for women with dense breasts, and we are urging Congress to give women in all states equal access to these life-saving screening tools. To support this bill and the expansion of supplemental breast cancer screening to women across the US, you can sign this petition.

Breast cancer is highly treatable, and if caught early, the outlook is generally positive. If my story can save just one person from going through what I went through, then that’s time very well spent. So, let’s work together as a community to share awareness, resources, and support and turn the tide of shocking statistics in our favor.”

Thank you to Shelia Mikhail for joining us and sharing her story. To follow Sheila on LinkedIn and join the online conversation, click here

To support BC-Ruckus, petition Congress to pass legislation to expand insurance coverage to give women with dense breasts access to supplemental breast screening. Click here

To read My Density Matters resources to support conversations around breast screening and dense breasts, click here.

How else can you keep this important conversation going?

Share your photos, videos, and experiences with us on X (Twitter) at @mdgroupintl or LinkedIn.

If you’ve been motivated by our conversation, please rate, review, and subscribe to the podcast wherever you listen. It helps other people like you who are committed to driving industry change to find us.

For more content around critical issues in the clinical research industry, follow us on social media, or visit our blog.

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