MBC BCAM awareness #2

Good morning! Picking up where I left off last week with Breast Cancer Awareness month educational tiles from Metavivor:

In 2017, I was 38 and had never had a mammogram because I did not yet meet the criteria for screening. I received my first mammogram in the process of my de novo diagnosis and if I had been getting mammograms, the density of my breast tissue and the fact I was breastfeeding would have affected the results. Every person needs to know their individual risk and which screening and diagnostic testing is the best for their body.

Thankful that Metavivor is aware that there are more genetic mutations leading to a higher risk of cancer than BRCA. In fact, the genetic mutation I carry, ATM, likely affects around 1% of the world’s population according to some researchers. Bottom line? Ask for full panels when you get genetic testing— I didn’t know to ask for the full panel when I was diagnosed back in 2017 and my surgeon only testing for BRCA delayed us learning about my ATM mutation. And, fun fact, if you got genetic testing prior to 2013, you may need to have that re-done because that’s when a lot changed. Check out Facing Our Risk of Cancer Empowered (FORCE) for more information and to connect with other like minded people if a genetic mutation is part of your medical profile — I help to lead one of the support groups for people with ATM, CHEK2, PALB2, among others.

People with mammary glands get cancer in those glands regardless of gender. It’s beyond time to discard the gendered and sexualized imagery around breast cancer. We know better, now it’s time to do better.

The first time I was exposed to the statistics demonstrating the racial disparities affecting mortality rates for people of color, I didn’t think it could possibly be true. And yet it is and it’s horrific. We know better, we’ve known better for quite a while and it’s beyond time to do better.

Postpartum breast cancer (POBC) is a beast and it was only a few years ago that I realized it is a term and category that applies to me and my diagnosis. Those of us diagnosed in the aftermath of a birth are more likely to have more aggressive disease and the prognosis is grim in an already grim reality. Check out this initiative to uncover a potential root cause of PPBC: https://www.instagram.com/p/DPXEoBQks1E/?igsh=MmlybHBmN2xkbnFi

Breast cancer isn’t rare and it affects so many people that it’s also pretty rare to meet someone who hasn’t been touched by breast cancer in some way. And yet, with all that prevalence and attention and funding, we still don’t have all the answers.

These waiting periods affect real people in real ways. In my monthly legal clinic at Project Life, I encounter people who cannot sustain their lives during these waiting periods and have to make heart wrenching decisions about working while getting treatment just to keep medical insurance. Urge your congressperson and your senators to co-sponsor, support and vote to confirm these life saving legislative efforts. It’s an up front cost, yes, but the ramifications of caring for people who are terminally ill only helps the system as a whole in the long run.

Follow Metavivor for more information and stay tuned for more educational moments during BCAM — for now, I’ll leave you with these thoughts — 1) think before you pink (ask questions before pulling out your wallet in October and all year long); and 2) Regardless of the actual percentage (different organizations suggest different numbers), there just aren’t enough funds going to MBC research. I usually suggest that the appropriate allocation should be like triage where you address the needs of the most injured first while people who can wait, wait their turn. It has long been my position and advocacy that if we solve the problem of why cancer metastesizes, then everyone will benefit — If we cure MBC, then no one will die from breast cancer and we are losing too many young women.

If you are looking for something to do tonight, here’s the info to participate in the ONE day during October dedicated to MBC — TO WATCH: The best way to watch this LIVE event is on a smart TV on METAvivor’s YouTube (www.youtube.com/user/MBC0906) or learn more at http://www.LightUpMBC.org. While viewing on YouTube, we encourage you to also view on METAvivor Facebook Live for a dual, engaging experience where you can comment and interact with other viewers. It can also be streamed through the LiveOne app and platform on www.LiveOne.com/LightUpMBC.