Don’t talk about my boobs unless you’ve walked in my shoes

“Breast cancer becomes very emotional for people, and they view a breast differently than an arm or a required body part that you use every day,” said Sarah T. Hawley, an associate professor of internal medicine at the University of Michigan. “Women feel like it’s a body part over which they totally have a choice, and they say, ‘I want to put this behind me — I don’t want to worry about it anymore.’ ”

http://well.blogs.nytimes.com/2013/01/21/facing-cancer-a-stark-choice/

The quote above is the last paragraph from a New York Times article published January 21st.  I first read about it here in this blog

http://pinkunderbelly.com/2013/01/23/preventative-mastectomies-under-fire/

And I must agree with “The Pink Underbelly” as my blood is boiling a bit.

I underwent a prophylactic bilateral mastectomy on March 5, 2012.  I had been diagnosed with Cowden’s Syndrome, alongside my 8 year old daughter, just months before.  I was presented, in January of 2012 with an article putting my lifetime breast cancer risk somewhere around 85%.  Cowden’s Syndrome, as you all know – but I doubt the author of this article knew, is a rare genetic disorder with a 1 in 200,000 occurrence.  It is a mutation on the PTEN (Tumor Suppressor) gene and causes benign and malignant tumors all over the body – with the hot spots being the breasts, uterus, and thyroid.

I made an informed decision to undergo that mastectomy.  It was not a decision reached lightly.  My mom is a BILATERAL breast cancer survivor, and even though she does not carry my genetic mutation, I will always believe that her decision for a complete mastectomy is the reason she is with us today – the reason she ever got to meet her grandchildren.

That doesn’t even get me started on the fact that my “prophylactic” mastectomy revealed DCIS – stage 1, a centimeter of cancer in the left breast.  Yes, it was contained.  No, it hadn’t spread.  Yes, I was fortunate, and NO, it WAS NOT the breast that had seen 7 biopsies in the 12 years prior.  This one had never been touched. And, the MRI weeks earlier did not pick up the DCIS.  So, my informed decision.  My smart surgeon.  My gifted plastic surgeon. My husband’s support.  The support of my boss.  The sick days donated from a friend.  My raw nerve.  My desire to be there for my little girl for years and years to come.  The Grace of God.  All these things saved my life.

So, I get a little twisted when people infer, and imply that these are decisions made lightly.  That women are just randomly having their breasts cut off.  This was not a trip to Hawaii.  This was not a walk in the park.  This was major league, life altering, body changing surgery.  There is not a woman I know, who makes this decision without intense scrutiny and research.  And, thanks to this blog, and my online support group. I have “met” many of them.

This article says

“We are confronting almost an epidemic of prophylactic mastectomy,” said Dr. Isabelle Bedrosian, a surgical oncologist at M. D. Anderson Cancer Center in Houston. “I think the medical community has taken notice. We don’t have data that say oncologically this is a necessity, so why are women making this choice?”

EPIDEMIC- affecting or tending to affect a disproportionately large number of individuals within a population, community, or region at the same time <typhoid was epidemic>

Really?

and WHY?

Why not ask us?

Why not ask those of us that have lost mothers and grandmothers and sisters to genetic mutations?

Why not ask those of us who have had countless mamorgrams, MRIs and biopsies, with “suspicious” pathology?

Why not ask us, who have done the research, or read the research on diseases you haven’t even heard of?

Why not ask those of us who, facing our imminent cancer risks, have made a choice to LIVE?

So the article says:

“You’re not going to find other organs that people cut out of their bodies because they’re worried about disease,” said the medical historian Dr. Barron H. Lerner, author of “The Breast Cancer Wars” (2001). “Because breast cancer is a disease that is so emotionally charged and gets so much attention, I think at times women feel almost obligated to be as proactive as possible — that’s the culture of breast cancer.”

Damned right Barron.  Proactive.  We have kids to raise. Spouses to celebrate life with.  Memories to make.  Tears to dry.  Hands to hold.  Lives to live.

Emotionally charged?  You bet.

Come by.

We’ll have some coffee.

Then I will tell you about my prophylactic hysterectomy.  Reccomended by a top surgeon at NYU.  Ten weeks after my mastectomy.  Not an easy choice.  Certainly not one made on emotion.

Logic.  Try logic.  And gratitude that the tools exist, and the surgeons exist that are willing to save our lives.

Don’t talk about my boobs until you have walked in my shoes!

19 thoughts on “Don’t talk about my boobs unless you’ve walked in my shoes

    • I just discovered your blog. I had double “prophylactic” mastectomy at 23, thyroidectomy at 28 and I just received a call from my gynecologist, I will have to have my uterus remove this year for my 29th birthday…I have a rare type of Cowden mutation and your opinion was beautiful and sincere and so true. It speaks close to home, thanks for sharing! I will certainly start following you 🙂 cheers from a Pten mutant 😉 pardon my english it’s my 2nd language!

      • You write English beautifully. I am sorry you have to go through all of this so young. It was tough to do at 38. I admire your courage. Please stay in touch. There are a few of us with Cowden’s that follow each other’s blogs. I am sure some of them will jump in. Be well!

      • Thank you so much! I was wondering if you knew a support group on the internet? I feel so isolated, I am the only one in my province to have a PTEN mutation! I’ve been enjoying your blog, I recognize myself a lot! Have a good day!

      • I like “Living with cowdens” a closed facebook group. I also like PTENworld.com, and the yahoo “cowden’s group.” Although the first seems to be the most active.

  1. Reblogged this on Decisions for my Family and commented:
    I have never reblogged someone else’s thoughts before but I fully share my friends outrage here! I wonder if the New York Times article author watched her mother die a long and at times very painful death. I wonder if she ever had to stare into the eyes of her children as she was told she had at minimum a 50/50 chance of developing breast cancer, a disease that has no cure nor is one close to being found after millions and millions spent.

    My story is different than my friend at “Beatingcowdens” but when it comes to the prophylactic mastectomy we are sisters.

    I wish I could have the last two years of my life back. I wish that I did not have to surgically alter my body. I wish there was no such things as breast cancer. I wish those who would like to speak out in judgement would do their jobs and maybe the rest of us could maybe have our wishes come true but since none of these things can or will happen I want to be clear, I have NO regrets in the decisions I made. Those decisions were not taken lightly and the pathology proved with great certainty that I WOULD have developed breast cancer.

    I finish with the same line as my friend, “Don’t talk about my boobs until you have walked in my shoes!”

  2. Pingback: Don’t talk about my boobs unless you’ve walked in my shoes « hopeforheather

  3. Here here! You said it beautifully! As an 11 year breast cancer survivor, I can tell you that my bilateral mastectomy (1 side prophylactically) saved my life! There has never been a day that I wasn’t grateful that I listened to MYSELF and did what I needed to do. Mammography didn’t show my BC and MRI only showed a mass. I endured a lumpectomy before having to return for a mastectomy because it had already spread (much to everyone’s surprise). I wrote about this exact topic when the Miss America controversy came out. At 35, I had an oophorectomy to prolong my life ~ yet another great decision that wasn’t accepted by most, but I can tell you that I’m here, I’m healthy and I’m happy because I listened to my body.
    I am sorry for what you have endured, but I am happy you are here to continue to inspire us and to stand up with us for the right to decide! Hugs to you!

  4. Just left the wake of a 39 year old, exactly one month older than me, who succumbed to breast cancer. I did not know her, I know her father through work, so I can not speak to her back story. I do know she was diagnosed 8 years ago. She spent some time “clear” before it metastitsized. Tragedy. All around tragedy. If one life is save because we have the knowledge of our genetic mutations, or family history, and have the ability to help ourselves… really no one’s business in my opinion!

  5. My amazing daughter and granddaughter have endured more than their share – my daughter is amazing and thank GOD that she has the brains, knowledge and love of her wonderful husband to do what she has done!!!!!!!

  6. It’s amazing how Dr. Isabelle Bedrosian has no idea, not just about the medical implications of being high risk, but of the psychological implications this also carries. Women don’t want to sit and wait around like a ticking time bomb. Thanks for sharing this article. x

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