The Angelina Effect: A Few More Thoughts

Only a short time after Angelina Jolie’s bombshell op-ed in the New York Times appeared, she lost her aunt to breast cancer at age 61. Her mother died from ovarian cancer at age 57. All three women in Angelina Jolie’s family have a defective BRCA1 gene, just like three of the women in my family. We know her pain.

In the comments, interviews and editorials since Ms. Jolie announced her choice to undergo what my docs simply call “the BRCA surgeries” there have been many who do not agree that lopping off healthy body parts to reduce cancer risk is a good thing. Of course it isn’t. It is an unfortunate reality that preventative surgery is the best of the limited weapons at the disposal of high risk patients. What really sucks is that all the choices are awful.

As I approach the fifteen year mark as a breast cancer survivor, I am profoundly grateful just to be here to complain about these issues. My relative with ovarian cancer has put up one hell of a fight for the last five years. I doubt she has five more. Many of the experts I have heard in the Angelina uproar say that those BRCA positive patients who witness close relatives suffer with cancer are more likely to choose prophylactic measures. No shit. Cancer is brutal and very, very ugly. No one likes to talk about that. Think losing your breasts is bad? Try the monster that is Stage IV breast cancer or advanced ovarian cancer on for size.

That is all for today’s rant.

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My Dad as a young man. He died of leukemia in 2004.

Allyn Rose: Mutant enters Miss America Pageant

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Allyn Rose
Photo Credit: Courtesy of The Hollywood Gossip

Miss America contestant Allyn Rose, a 24-year old college graduate with movie star looks is so much more than another pretty face. Although she did not make the cut to be a Miss America pageant finalist, her DNA made news around the world. Morning talk shows and tabloids gobbled up her story, eager to label her health dilemma and decisions as controversial. Strong opinions, even hate mail, have followed Ms. Rose in the weeks since she announced her intention to have a prophylactic bilateral mastectomy.

Welcome, Allyn Rose, to the path that anyone with a BRCA1 or BRCA2 genetic mutation knows so well. Our mutations are more famous than your very rare Wiskott-Aldrich syndrome but hey, I am certain those with Cowden’s, Li-Fraumeni, Peutz-Jegher or the host of other known hereditary genetic defects that predispose one to breast cancer will welcome you into the mutant fold. We need you in a big way.

Why do those in the hereditary cancer community need Allyn Rose? It’s simple. There is work to be done to educate people everywhere about the risks and choices involved in familial cancer. Allyn Rose has stepped up to the plate and said to the world she wants to make preventative health care her mission. I applaud her efforts on behalf of those everywhere grappling with the same difficult decisions her family faces.

Thank you Allyn Rose. I am certain your Mom, who died from breast cancer at age 50, and the many generations of women in your family who suffered the same fate, would be so very proud of you.

BRCA Genes, Boob Dreams, Previvors and Survivors.

Seven nights out from the last phase of breast reconstruction surgery, propped up on two pillows to protect my new nips, I had an odd dream. My sister Anne and I were shopping for clothes in a tiny boutique where we had to share a dressing room. As I reached for a beautiful blouse to try on it hit me. I had my old boobs. Yes, the big, unruly triple D’s were back. To make matters worse I had on NO BRA. It used to be I did not even walk around my bedroom without a bra, let alone go out in public without a mile of underwire, hooks and heavy-duty strappage.

2008. Left to right – my niece Emily, me, Anne, Mom. Seated, my other niece Katherine holding her new baby.

Like most dreams, the embarrassing scene floated away without any resolution or meaningful conclusion. While I’m still working on adjusting to the new version of me, I don’t miss those old cancerish troublemaking honkers. Spaghetti straps, camisoles and other skimpy things I could never wear will be in my future.

I am certain my sister floated into that dream because tomorrow it will be her turn for bilateral mastectomy with DIEP flap reconstruction. While I am at the doctor’s office getting the bolster dressings removed, she will be on the table. I ask that you send good karma her way and hope she is spared the complications I experienced. Send some good karma for my Mom too. Two daughters going through this ordeal this year has been difficult for her as well.

My Dad fathered three girls and a boy. His daughter from his first marriage has recurrent ovarian cancer. I had breast cancer at age 36. My sister Anne is the only girl in our generation who can claim the word previvor as her own. What does it mean to be a previvor?  To me it means managing the choices of being at insanely high risk of breast and ovarian cancer. These choices include increased monitoring, chemoprevention or prophylactic surgeries. Make no mistake, all of these choices are difficult and none provide a true fix for the genetic defect.

I’m truly happy my sister Anne has chosen the route of prophylactic surgeries. Right now it is the most effective strategy we BRCA mutants have.

When we were kids it seemed like I went from being flat-chested to very well endowed overnight. My dear sister nick-named me “Saggy Maggy.” Not very nice. Over the years I endured lots of teasing, suggestive comments, leering and worse, all due to my stupid big boobs. Now I’m just looking forward to a future shopping trip with Anne, both of us free from cancer. Of course, she will still have that bubble butt and I will still have no butt at all, so there will still be other things to pick on. Some stuff never changes.

1964. Me and Anne on Halloween.

 

 

 

 

BRCA Genes, Dr. Ivan Oransky, Previvors and Common Sense

Ever watch the news on television and recognize when a story is biased? Maybe you’ve blown by entire news outlets to avoid certain talking heads. Whether it gets printed, blasted from the car radio, ricocheted through cyberspace or shown on TV, we’re assaulted with a huge amount of fluff out there that purports to be accurate information. The realms of science and medicine are no different from politics or any other arena when it comes to an abundance of conflicting voices, data and opinion. Snake oil comes in many forms. When it gets packaged in a slick presentation by a highly respected, well-known medical journalist like Dr. Ivan Oransky, I pay attention. Today, I’m calling him out.

Step 1.

Watch this video of Dr. Oransky’s presentation at the TEDMED conference in April, 2012. It takes about ten minutes. http://www.youtube.com/watch?v=IUtrYjIGdaE

Step 2.

Then read an open letter to Dr. Oransky from Sue Friedman, the director of the hereditary cancer non-profit, FORCE. http://theoranskyjournal.files.wordpress.com/2012/06/force-tedmed-response.pdf

Step 3.

Finally, read the good doctor’s response. He says the problem is the definition of the term previvor.  Is that the problem? http://theoranskyjournal.wordpress.com/2012/06/12/whats-a-previvor-cancer-advocacy-group-that-coined-term-objects-to-how-i-used-it-at-tedmed/

Here’s my two cents on this:

TEDMED invites leaders from many sectors to its conference on health care and technology. Some of the best and brightest minds the globe has to offer exchange ideas at the cost of nearly $5,000 per attendee. This elite group heard Dr. Oransky’s speech but it is unlikely they will ever read Sue Friedman’s letter or Oransky’s wimpy response. They will believe that previvorship is a suspect notion promulgated by a greedy non-profit. How sad.

I’m not an M.D. or a journalist. I did not attend Harvard. Oransky did. I am a housewife, a BRCA positive breast cancer survivor and a skeptical, voracious consumer of information related to my health problems. A dose of common sense is all it takes to recognize that Oransky did a masterful job of saying we’re all responsible at some level for the failures of our troubled health care system. It was also pretty obvious that he got some facts wrong. To call his audience “previvors” for surviving his talk was merely a poor joke.

I’m also thankful that FORCE is there for me and Dr. Oransky is not on my medical team. As far as I can tell the only thing I have in common with him is an appreciation for good Zinfandel. I wonder if he’s ever tried the Linne Calodo wine called Problem Child?