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BRCA: Taking control, I have the power: Why I decided to have a mastectomy and reconstruction.

Updated on September 4, 2011
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What is right for one person may not be right for another.

That is what I always tell others when I share my decision to have a prophylactic mastectomy. We are each individuals and the decision is very personal. I also share the importance of doing research about the BRCA(Breast Cancer) mutation, statistics, surveillance, procedures and doctors. Talk to as many people as you can who have gone through or are going through what you are. Attending a “show and tell” at FORCE (Facing our Risk Cancer Empowered) allowed me to see results of what a mastectomy and reconstruction actually looks like. There are a number of types of reconstruction offered today. I have chosen to have the one-step procedure.

My decision was based on a number of things.

First, I have seen many people in my life suffer from breast cancer. They received radiation and chemotherapy. For many, it was brutal. My aunt had a radical mastectomy after she was diagnosed. From seeing these experiences firsthand, a fear grew inside of me that it could be me but also a feeling that I was lucky. I was lucky enough to know that I was at risk and I could do something about it. I have a 50 to 85% risk of developing breast cancer by age 70. Having surgery would reduce my risk by 90%. This number varies upon whether or not you have intact ovaries.

Feeling fear

I started getting nervous when it was time for a 6 month checkup for my MRI or mammogram. At my yearly mammogram, I was called back to redo the mammogram. That made me a bit nervous. They told me that the pictures didn’t come out clear enough for the radiologist to read. I was relieved. But when I returned to the waiting room, I saw tears in my mother’s eyes and anxiety and pain all over her face. I told her everything was okay; that they were just redoing the pictures. And, everything was okay. The results showed nothing abnormal. But I then realized that I didn’t want to go through this anxiety every 6 months of “What Ifs?” What if they see something? What then?

Feeling lucky

I am not blessed to have this mutation, but lucky enough to know that I can do something to lower my risk. I want to be healthy, live a long life and decrease my odds. And what is so amazing is the advancement in the types of procedures available today. I have chosen the one-step procedure because everything is accomplished in one surgery, mastectomy and reconstruction. There is minimal scarring, which is the result of an 8cm incision under each breast. And because I am getting implants, I will be perky when I am 80!

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    • justsayom profile imageAUTHOR

      justsayom 

      6 years ago from United States

      Hi Kris,

      Have you ever heard of the organization FORCE? Attending their meetings really helped me come to my decision. Their website is facingourrisk.org.

    • justsayom profile imageAUTHOR

      justsayom 

      6 years ago from United States

      Hi Kris,

      Have you ever heard of the organization FORCE? Attending their meetings really helped me come to my decision. Their website is facingourrisk.org.

    • profile image

      kris 

      6 years ago

      I am trying to make this decision right now. I do not know my brca status however we have ovarian and breast cancer in the family and I have had 3 biopsies and now have to have MRI with contrast every 6 months. Part of me says do it, the other part is terrified.

    • profile image

      Lynnie23 

      6 years ago

      Thank you for writing so clearly about the difficulty of making the choice to have preventative surgery. It is an individual decision and not something that everyone with a BRCA mutation would choose. I am also BRCA positive and chose the one-step procedure. Because I was done having children, I also had an oopherectomy. I don't think this type of thing is an easy decision for anyone. No one wants to needlessly remove parts of their body, especially breasts, which for most women are a significant part of their femininity.

      If I was told that I had up to an 86% chance of developing liver cancer, I would probably want my liver removed, but I am not sure what type of a life I could live without it. I knew for me, losing my breasts would be more emotional than anything. I didn't really "need" my breasts in order to function physically. I waited almost 7 years after finding out I am BRCA2 positive, before I had my surgery. Like you, every six months when it was time for my mammogram or MRI, the dread would creep in and I would wonder if I would hear those awful words, "You have cancer." I cannot imagine how I would have felt being told that, especially knowing that I was empowered with the knowledge, and options that I could take to prevent breast and ovarian cancer.

      I didn't wake up each day during those 7 years of knowing my BRCA status feeling a cancer cloud hovering over me, but I knew it was there.I was actually very surprised that once my surgery was complete, how relieved I felt! A few days after my surgery, my breast surgeon called to discuss the pathology of the the breast tissue that had been removed. They found two areas of pre-cancerous cells in my breast tissue. I am not sure how long it would have taken for those cells to fully develop, and I am happy to say I will never find out.

      It has been 3 1/2 years since I was blessed with my new cancer free breasts, and for me, I couldn't be happier with my decision. I will be thinking of you as you go through your surgery the process of healing.You will be in very good hands. Your strength and positivity are truly inspirational! You are going to do great, and yes, you will be perky until you are 80 and beyond!

    • profile image

      Daniellechik 

      6 years ago

      I, too, decided to have a prophylactic mastectomy and reconstruction when I found out I had one of the BRCA mutations. It was an extremely difficult decision to make. Like justsayom, I felt victimized and lucky at the same time. In the end, I realized that I was given a gift--rarely does a disease give the sufferer an opportunity to take control. My surgeries (I opted for a two-step procedure) were empowering to me. I no longer live with the dread of if/when every few months because a screening shows an anomaly.

      Like trish1048 suggests, surgery seems like a drastic measure. I even told a friend (before I received the results of my BRCA test) that I wasn't about to run out and cut off my breasts simply because there was a chance that I would develop cancer. But after doing extensive research, and talking to doctors, geneticists, surgeons, cancer survivors, etc., I came to the conclusion that I didn't want to take a 22% chance (I was given an 88% chance of developing breast cancer in my lifetime) with my health and my life. And really, how different is a prophylactic mastectomy from the tonsillectomy I had when I was in 8th grade because I kept on getting throat infections?

      On Friday, I will be celebrating the 1-year anniversary of my mastectomy. I have no regrets.

    • profile image

      Gloria 

      6 years ago

      What a brave and thoughtful decision you have made. I applaud you for your courage and all the research you have done. I am a breast cancer survivor and had a mom who died of the disease at 53. My very best wishes for the surgeon to do a good job with no complications and a quick recovery. Hope to see you in October so we can celebrate your recovery and my birthday.

    • profile image

      Diane 

      6 years ago

      It's an incredible difficult decision. Thank you for sharing your thoughts with others. I didn't know I had the genetic mutation until I was diagnosed with Stage 2 breast cancer but did all I could then to hopefully prevent it from coming back.

    • profile image

      Laura 

      6 years ago

      I LOVED your story...I share the same story :) I had my double mastectomy with silicone implants last summer and my hysterectomy this summer. Through all of the pain ad tears, the best feeling was that of relief! I wouldn't change my decision for ANYTHING! I am so grateful that I am able to focus on my two young boys and not worry about breast and ovarian cancer. While nothing is guaranteed in life, I know that I was able to make the decision to not have breast or ovarian cancer...

    • profile image

      Karen N 

      6 years ago

      I had a double mastectomy and never regretted it. I think about my cancer returning and having kids. I feel the surgery gave me a chance at living life just a bit longer.

    • Heather McMillan profile image

      Heather McMillan 

      6 years ago from Hampton, VA

      I applaud you for taking the step for preventive measures! I had a double mastectomy at age 24 when I had stage 3 cancer in my left breast, the fear being I could not deal with the cancer and chemo and second time in my right. I was not able to have reconstruction because I had no insurance and that did leave me bitter for many years, but I never regretted removing both breast. I did test positive for the BRAC gene 9 years later and made the choice to once again have a preventative total hysterectomy. Although I had always wanted to have more children, it was more important for me to be around to raise my one son than take the risk of having ovarain cancer and keep the ovaries. Rated up, awesome hub!

    • justsayom profile imageAUTHOR

      justsayom 

      6 years ago from United States

      JM, thanks for sharing. Best of luck to you for continued good health.

    • justsayom profile imageAUTHOR

      justsayom 

      6 years ago from United States

      Thank you Jane!

    • profile image

      JM 

      6 years ago

      Thanks for sharing! I just had one step 4 weeks ago and for me it was a "no brainer" but it is not so easy for others! The show and share room inspried me too!!

    • profile image

      JanetheWriter 

      6 years ago

      Bravo to you! I could not agree more with what you've said. In fact, except for the fact that I had DIEP reconstruction (just six weeks ago), I might have written this piece myself. I wish you continued health and a long, fulfilling life.

    • justsayom profile imageAUTHOR

      justsayom 

      6 years ago from United States

      Thank you for sharing. It took me years to make my decision. Like I said, what is right for one person may not be right for another.

    • trish1048 profile image

      trish1048 

      6 years ago

      What a drastic measure for a 'what if'. True, cancer anywhere is ugly, and many times, not curable. This begs the question, would you choose to get more things removed just to be 'safe'?

      I also fully understand certain types of cancer are genetic. Both my parents died of cancer, however, as frightening as the disease is, I'm too much of a coward to try to prevent it with a cure that is, at best, hopeful. Cancer can strike any part of the body as you well know.

      I respect your right to do what feels right for you. It's just not a choice I would make.

      Thanks for sharing.

    • profile image

      Susan 

      6 years ago

      I love the playful, hopeful tone in your voice and the idea that rather than riddled with fear you are thinking of being perky at 80!

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