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Looking Back, Facing Forward part 1

A few months ago, I was determined to find out who was providing emotional support to people with the BRCA gene mutation, yet kept coming up short. I did have my double mastectomy in Boston, but was never offered any resources, perhaps because I wasn’t local. So, I decided to call Dana Farber, the cancer research Mecca, as well as home to my beloved Breast Surgeon, Dr. Laura Dominici. Upon inquiring about their BRCA support, I discovered that, they too, outsource.

Most hospitals seem to rely upon 2 organizations to immobilize women to volunteer their support to those diagnosed with the BRCA mutation. America doesn’t run on Dunkin’, it runs on women volunteers. In this case, hospitals don’t need to fund any support, thanks to FORCE and brightPink and their shiny pamphlets that every genetic counselor doles out like a dealer at a blackjack table. Thank goodness, or else we’d be left in the dark.

Luckily, through my support seeking calls, I was also informed about a biannual BRCA conference called “Looking Back, Facing Forward”, held at Massachusetts General Hospital (MGH) this year. I invited my mother and sister on Mother’s Day weekend, and have to say that we were quite impressed with the underwritten day filled with eloquent medical speakers, researchers, BRCA mutation positive panelists and delicious food. I can’t wait to share some of the knowledge that I learned over the coming weeks.

As registrants entered the conference, we were handed various strands of colorful beads according to our diagnoses: I wore green for BRCA +, blue for being a “previvor” (meaning, no cancer yet) and silver for a support person. When I arrived home and showed my husband, he laughed at the irony of Mardi Gras flash-your-boobs-and-you’ll-get-beads being passed out at a breast-related conference. I wish that I had seen the silly connection earlier, only seeing it as a clever way for people to connect through their conditions. My mom wore more types of beads, which felt alarming and miraculous at the same time.

Like I mentioned to a small group of doctors and genetic counselors–a BRCA diagnosis is like you’re being sent home with an 18-wheeler full of stressful decisions. Do I have preventative surgery? Which one do I have first? What will life be like afterward? Will I regret getting surgery? Will I regret not having surgery if I eventually get a cancer diagnosis?

As the new research breakthroughs were presented, I felt myself “Looking Back” and swallowing back tears of possible regret. I feel as though we will someday be known as those BRCA+ women who unnecessarily chose mastectomies, just like those moms in the 1940s who were drugged into twilight sleep, only to awake and discover that they had mysteriously delivered a baby during their “nap”. My grandmother was one of those women on possibly 3 different occasions. After enduring 2 mastectomy clean-outs of muscle and every lymph node when she was so young (due to multiple breast cancers), at least she was relieved from painful labors.

Besides fear and stress, some conference hot topics were about how to talk to our children and their risk, and what about men? Both of which I will write about in the next few posts.

“A woman is like a tea bag–you can’t tell how strong she is until you put her in hot water.” ~Eleanor Roosevelt

Where do find your greatest support? What do you need to feel more fully supported on your journey?