Prophylactic Bilateral Mastectomy – Not just for the movie stars

I have been busy this week – working a on a few new projects.  Trying to find some distracting hobbies.  I need a few things to every once in the while take the focus off the imminent cancer risks plaguing Meghan and I every second of every day.

So, I started talking a lot about Isagenix, the product that did so much to give my husband back his health, and to help him lose over 30 pounds in the process.

This week I have signed up four friends to try to get healthy with Isagenix, and I feel good about advocating a high quality product.

http://meghanleigh8903.isagenix.com/us/en/landing_cfl.html#

Isagenix

This week involved hosting an anniversary party for two overly deserving parents.  It also involved some run of the mill nonsense – dealing with ridiculous medical bills and the like, from people who will never “get” what it means to have to spend every day of your life out in front of a chronic, potentially life threatening rare disease, PTEN Hamartoma Tumor Syndrome – or Cowden’s Syndrome, as we usually refer to it.

I do my best every day, to raise awareness of what it is like to live with a rare disease, a genetic mutation that predisposes my daughter and I to so many cancers.  I do my best, wearing proudly our denim ribbon, and sharing ribbons with friends and family, to educate the community on our, and other Rare Diseases.

hope its in our genes

Now, I know its slow going, but I am confident that more people in our community have heard about Cowden’s Syndrome than just a year ago.  Of that I am sure.  And we will continue our grassroots effort – one person at a time.  Until hopefully, one day everyone will know of the “Global Genes Project,” and the 7.000+ Rare Diseases besides ours that are out there.

Today I sat down at a scoring site for the State Math Exam, and two girls I never met before feverishly gushed over the bravery of Angelina Jolie.  Having heard nothing of the story, I asked what all the fuss was about.

English: Angelina Jolie at the Cannes film fes...
English: Angelina Jolie at the Cannes film festival. (Photo credit: Wikipedia)

“She had a preventative double mastectomy because she has a gene that makes it more than 80% likely she will get breast cancer.  She is so brave!”

I smiled in spite of myself.  I smiled in spite of the irony that had me wearing the T shirt “Yes, these are fake – the real ones tried to kill me!”

yes_theyre_fake_real_ones_tried_to_kill_me_light_t

I smiled because I thought it was great that Angelina was well and had gone public.

“You know she decreased her breast cancer risk to under 5% now?  She is so brave!  I can’t imagine anyone doing that!”

I still kept quiet.  I quickly checked my Emails to reveal that the blogs I follow regularly were all over the Aneglina story and had eloquently covered it.  I listened some more.

Finally, almost on cue, they got bored with their story and asked me about my necklace – the denim ribbon.

meg necklace3

I told them I my daughter and I had a rare genetic disease.  That the denim ribbon was the symbol for rare and genetic disorders.  They asked what the name of it was.  So as I identified “Cowden’s Syndrome,” the expected reply was given.  “I haven’t heard of that.”

“Well,” in my most succinct conversational tone, “PTEN is a gene that stops tumor growth.  Ours is broken so we are more likely to get cancerous and non cancerous tumors all over our bodies.  Especially in the breast, thyroid, and uterus.”

“YOU MEAN YOU HAVE THE SAME GENE BROKEN AS ANGELINA JOLIE???”

(Having not fully read any article I quick double checked my suspicions and confirmed,) “No, she has a mutation on the BRCA1 gene. My daughter and I have the same 85% risk of breast cancer, as well as countless other elevated cancer risks.”

“Well if you ever have to get a mastectomy at least you’ll know Angelina did it.”

You know I never much followed the stars.  And I am so grateful for Angelina Jolie for being brave and going public.  But there is so much more people need to learn.  Nothing comes in neat little packages.  Nothing.

I stretched out my shirt so they could read. “Yes – they’re fake , the real ones tried to kill me!”

are there any other mutations

“I had my double mastectomy.  Last year.  They found cancer.  And I am ok.  Genetic mutations aren’t just for movie stars.  Bravery isn’t just for those who have wealth and power.  There are more of us than you think.”

I was grateful when the tests arrived at the table.  It changed the conversation.  People don’t want to talk about cancer.  Especially not young women with genetically caused cancer.  It makes them uncomfortable.

I am glad Angelina Jolie went public.  I just wish the public would open their eyes to the realities that are undoubtedly right next to them every single day.  It doesn’t take a star.  Just a conversation.

Let’s talk.  Let’s listen.  Let’s learn.  We can save lives.

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

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!