Health News Review

Women with breast cancer who are active on social media make a vital contribution to our public dialogue.

So, when I read Angelina Jolie’s New York Times opinion piece, “My Medical Choice,” about her decision to have bilateral prophylactic mastectomy after breast cancer gene testing, I turned to some of the women I follow through Twitter or blogs.  Some examples and excerpts:

  • Katherine O’Brien on her ihatebreastcancer blog: “One question Jolie doesn’t touch on: the Supreme Court is currently determining if human genes can be patented. Myriad owns or licenses two human genes linked to breast and ovarian cancer. If you need BRCA1 or BRCA2 testing, as Jolie did, Mryiad has your fate in their hands. The Supreme Court ruling is expected in June 2013.”
  • Lisa Bonchek Adams on Twitter: “I do pause at the ‘holistic alternatives’ to surgery Jolie mentions.  This makes me nervous….My main wish (not sure can say criticism) is that she had educated on how her process VERY diff from if cancer had been detected…That is, she did great job saying what she did but some might not understand how very diff that is from friend with cancer having mastectomy….I always think it’s impt to explain what you did and how it varies from what people might be commonly familiar with…Women who’ve made same choice as Jolie will get lots of media attn now. How about those of us with metastatic disease? Not happy ending.”
  • Jody Schoger on Twitter: “Agree – I wouldn’t be going holistic with BRCA1 mutation….Angelina Jolie defined her decisions for double in context of the BRCA 1/2 mutation. Most BC is sporadic, no known mutation….My breast cancer recently metastasized after a 15-year interval. There’s still so much science & medicine can’t explain, prevent, or treat.”
  • Dr. Elaine Schattner on her Medical Lessons blog: “Don’t Judge Her! An Essay on Angelina Jolie, BRCA, Cancer Risk and Informed Decision-Making.”

Much more to come, I’m sure.

Addendum:  See the comments by Dr. Otis Brawley, chief medical officer of the American Cancer Society.

Addenda on May 21:

  • This past weekend, Fran Visco, President of the National Breast Cancer Coalition, spoke about the news and surrounding issues on the radio program, “For Your Ears Only.”

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Comments

Marjorie Hiltner posted on May 14, 2013 at 10:28 am

I was diagnosed with BC in June of 2012, had double mastectomies August 2012. My Surgeon left me in such a horrific condition so as I could not put my arms down, nor wear my clothing tops. After several inquiries to him as to what he was going to do, he just said, go see a Plastic Surgeon. I soon found that Plastic Surgeon don’t do this kind of repair. After many weeks of searching for another Surgeon to help me, I found a wonderful Surgeon who was willing but advised it was going to be “serious surgery”. He had to perform 2 complete mastectomies surgeries, one in November and another this past February 2013. He told me he had to remove hands full of tissue left by my first Surgeon. I am now healed and so very thankful to be here. I am 77 years old and I can tell you I know a lot about breast drains, staples and pain. I have also incurred several thousand dollars in addition to my health coverage. I am not seeking donations but I am concerned how many other women have had to go through this. I am unable to file a medical malpractice against the Surgeon because the new law states you have to have an expert witness in that field and I cannot find another Surgeon willing to do that. The new law protects the Surgeon and not the victim. Oh, I am aware that a lot of people in the past have filed frivolous law suits and so they had to do something. If you are interested in seeing the graphic photos of my journey, from beginning to the end, please feel free to email me at mhiltner2@gmail.com.