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brca cancer survivor talks about mastectomy decisions

Angelina's Bold Decision, Why Dr. Bailey Agrees

In her New York Times op-ed, Angelina Jolie Pitt shared what she learned during her five days of waiting for critical cancer tests. She said,

“The beautiful thing about such moments in life is that there is so much clarity. You know what you live for and what matters. It is polarizing, and it is peaceful.”

In waiting, she told herself,

“To stay calm, to be strong, and that I had no reason to think I wouldn't live to see my children grow up and to meet my grandchildren.”

Reading Angelina Jolie's op-ed words in the NY Times this morning, I cried.

I fought it, but I still cried - my BRCA cancer experience is still close to the surface. I focus on the silver linings, such as the "clarity" that facing the idea of a short lifespan brings you to know “what you live for and what matters.”

BRCA mutation carriers face an unprecedented personal threat of cancer and our family experience is filled with it too. We ride a cancer roller coaster - tests, anxiety, epiphanies, and, at times, sorrow and loss.

How lucky we are that eloquent, compassionate and wise Angelina Jolie is here with us as a generous and unofficial spokesperson.

brca breast cancer survivor dr. cynthia baileyIn moments when I feel sadness for the female body parts I've lost, and the harsh treatments my body has endured in exchange for life, her stunning beauty and femininity are a comfort, an example, and a support. - Breast Cancer Survivor Dr. Cynthia Bailey

It’s not an easy journey and it would be more difficult without her.

This morning her words land on "a good day" and yet I still tear up.

  • It's been almost a year since I was thrown into a second menopause by the surgery she just had.
  • It's been just over a year since "scorched earth" chemotherapy.
  • After chemo, I had the bilateral mastectomy with lymph node removal in both armpits. It was a very painful recovery.
  • Four months later, I had breast reconstruction surgery.
This was the treatment I received for two BRCA breast cancer tumors. Yes, I had a separate small aggressive cancerous tumor in each breast. 

    Unlike Angelina Jolie, who previved breast cancer, my double mastectomy came with chemo and lymph node surgery because I didn't know in advance that I carried the BRCA gene.

    Kudos to her for knowing - and for acting preemptively - based on our 87% lifetime risk of breast cancer. Good choice sister.

    Genetic information is a life and death issue for many, including BRCA mutation carriers and our families. My working, professional nurse grandmother, who proudly served in WWI, died at exactly my current age. I think I might have gotten my BRCA mutation from her.

    In retrospect, my doctors think that she probably died of ovarian cancer. In her photographs, there are parts of her that look like me but I never met my grandmother. She died with her abdomen full of cancer before I was born. Angelina, ovarian cancer will not keep you from meeting your grandchildren (teared again as I typed that sentence). BRCA ovaries and fallopian tubes are frightening. It's good when they don't have cancer.

    My Stanford BRCA cancer specialist said that the experts guess that every person alive has around six "bad genes" that put them at risk for serious illnesses like cancer.

    She comforted me that we BRCA mutation carriers just happen to know one of our "bad genes." As scientists and doctors learn more about these genes, everyone will eventually face the sort of decisions that the BRCA community faces now. We are the "canary in the mine shaft" because one of our bad genes was so obviously bad. Click here to see the BRCA gene mutation infographic that I created to help you understand the BRCA1 gene mutation and whether you might be at risk.

    Angelina, I’m so glad your ovaries and tubes came back without cancer. I know what that wait is like. I, too, had a “benign” ovarian tumor and a pre-surgery scare. Thank goodness for “benign.” May we cross our fingers that the rest of our lives are cancer free. I’ll pray for you and the rest of our BRCA mutation family. At least we know.

    Dermatologist's Chemotherapy Skin Care Kit supports hereditary cancer advocacy

    dermatologist's chemotherapy skin care kit During cancer treatment, I created my Chemotherapy Skin Care Kit to keep my own skin healthy, comfortable and free from skin infections and other chemo related problems. I donate all the profit from sale of this kit to FORCE, the advocacy organization for the hereditary breast and ovarian cancer community.

    The Chemotherapy Skin Care Kit makes a thoughtful gift for someone going through chemotherapy.