Me, My Family

Genetic testing

So to this day I have never been tested for the BRCA gene.  My decision to have the bilateral prophylactic mastectomy was based solely on my own history.  A mother who died of breast cancer and my own irregular pathology which put me at a 50-50 risk which was good enough for me.

The findings of lobular carcinoma in situ validated my decision to act quickly and aggressively.  Once I was finished I did not put too much thought into BRCA genes.  I was doing the follow ups needed and figured we would get the girls tested as they got older.

I have now come to realize that along with the facts that I knew, men in my family also have prostate cancer which is also associated with the BRCA mutations.  So, does it matter at this point?  For me personally probably not.  I have already sprinted out ahead of breast cancer and will have yet another pelvic ultrasound in a few months to once again check my ovaries.

It does matter greatly for my beautiful girls.  For me to be able to protect my girls, to be as proactive as possible with their health I need to have as much information as possible!  I reached out to the genetic counselor I met with almost two years ago.  Thankfully she replied pretty quickly to my e-mail and is pulling my file to check on the insurance.  That was always the sticking point for the testing.  This blood work cost well over $3,000 dollars which is just not in the budget.  I will not rant too much about the insurance company since they were fantastic as the surgery bills came in.  My out-of-pocket was minimal!  It is the entire system that is broken.  priorities are out of whack.

I will receive word probably in a few days and like everything else will go from there.  Until I do hear back, all focus stays on the something really important…10 days until Disney!  Mickey_Mouse_Clubhouse_-_Mickey_-_Playhouse_Disney_Canada

 

Me, Post-Op Bilateral Prophylactic Mastectomy

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 from 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!”

 

beatingcowdens

“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…

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Post nipple reconstruction/revision, Post-Op Bilateral Prophylactic Mastectomy

Never ending medical appointments

So I had the appointment with the gynecologist today…always a thrill!  It is interesting telling my Prophylactic Mastectomy story to people who are not aware.  According to her,  records are often not sent until you are released from care.  Since I am still officially undergoing treatment my GYN had no update since the mammogram of March 2011 that started it all.  She was a very interested audience.  The person I see at the office is one of the nurse practitioners.  I have gone to her for years, much easier to get an appointment that trying to see one of the doctors.  She was the one who was there the day I had my miscarriage and she was the one I saw following the birth of both of my beautiful girls.

She added to the chorus of folks who say how brave I am.  She also added to the list of those who want me to have further tests. She agrees with the colonoscopy and not to be out done by other doctors,  feels I should also go for a pelvis ultrasound. I feel like I am some pawn in a wired medical game, I se you mastectomy and raise you one colonoscopy and a pelvic ultrasound.  So if everything were to go perfect, I have at least 5 more medical appointments minimum before we can close this chapter of my life, and when does life go perfect?

The connection between breast and ovarian cancer is known.  Can I say clearly how F-ing tired I am of tests and doctors?  Of course I will go but think I am going to hold off making an appointment until next week.  I hope to get a date nailed down for the last of the breast procedures before making more appointments. I sure hope it is the last!