Me, My Family, Post-Op Bilateral Prophylactic Mastectomy

Mark the date

keep calmI was standing amongst a group of women the other day listening to the conversation.  I am not fully sure how, but the topic of breast cancer came up.    Three of the four of us standing there lost our mothers to the disease.  As I looked around another woman close by recently lost a sister.  It is not hard to find someone who’s life has not been affected by breast cancer, it seems in my travels it is nearly impossible.

According to recent statistics, about 1 in 8 US woman will develop invasive breast cancer in her lifetime.  As you stand in a room look around, count the woman in the room. Who will it be?  With numbers like that what still astonishes me are those who do not have a sense of urgency to be checked.  Women who find it to be too much of an annoyance to have the yearly mammogram done.  For many of us the mammogram was useless.  I used to also have yearly breast ultrasounds.  If you are not fortunate enough to have a doctor who will write the scripts together you have to wait for the alarming phone call letting you know the mammo was inconclusive or even worse saw something abnormal. It is probably nothing they say but back to the radiologists for the ultrasound, very time-consuming.  Most of my lumps never showed up on mammograms.  Many times I heard it was probably nothing.  Several of those ended up in biopsy until the day when it was the beginnings of something.

dateI was able to react, to take control of my situation because I was vigilant with my screenings.  I hated it of course but a necessary thing.  I had my first Mammogram at 22 years old and my first biopsy soon after.  Mammograms, Ultrasounds surgeries and MRI’s made it clear what my future would hold.  Because of screenings I was able to seek out advice, talk to experts and make the decision to have a preventative mastectomy before ever having to face any type of cancer battle, thank god!

Complain, whine, scream if you must but make your appointments and have the screening done!  Somethings are just too important to wait!

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Me, Post-Op Bilateral Prophylactic Mastectomy

Waiting for the call….

As 2012 began to wind down, my mobility had returned to almost normal.  Three surgeries were now a thing of the past, just a memory.  The scars from the bilateral prophylactic mastectomy and DIEP flap procedures were healing nicely and the aches were improving with every day.  I began to set my sights on 2013 and a new start, one without worries about cancer risks or surgery.

Then came a visit to the gynecologist in October.  Based on the findings of lobular carcinoma in situ during the BPM, the doctor felt it would be smart to have a pelvic ultrasound due to the link between breast cancer and ovarian cancer.

On November 7, 2012, my thoughts of a worry free 2013 quickly came to an end when complex cysts were found in my right ovary.   January 14, 2013 I repeated the ultrasound hoping for improvement but found worse news.  The cyst was still there and larger, one was now also located on the left and something was seen in the lining of my uterus.  Worry free 2013 was long gone! A biopsy was performed as was a CA-125 blood test.  Both came back showing no cancer.  Instead the item on the uterine lining looked to be a polyp.  An endometrial ablation was recommended.  I decided to wait until a third ultrasound could be performed so we could make a decision about the cysts at the same time.

April 2, 2013 I went for that final ultrasound.  After I did something I do not normally do, I made a list of questions.  I was done having ultrasounds every few months and wanted to be ready for a real conversation about moving forward. Questions such as, Do we remove the cysts in the ovaries at the same time as the ablation? Do we remove an entire ovary or both?  Do we go fully radical and remove it all?

I was prepared for everything except for what came next.  The call came along with the normal pleasantries, how was our trip to Disney?  How was I feeling?  Although I do personally like my doctor, I wanted the results.  She stated with a long “WELL”, I was a bit nervous.  She continued, “the cyst on the left is gone, and the one on the right has reduced in size”. Ugh, what?  Gone?  The words swirled for a second in my head until I finally realized, this was good news!  I actually said to her, “well that is good news, right?” No more ultrasounds!  Not so good news about the uterine lining which showed a new cyst/polyp but we already knew that would not correct itself.

SO, I have a pre-op appointment at the end of May to prepare for the endometrial ablation.   My list of questions went onto the trash. In the greater scheme of where I have been and what I was expecting, a minor surgery! I would much prefer to stay out of hospitals yet, compared to the alternatives, I am pleased, and thankful!

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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