I just read where a Miss America contestant representing DC is planning to have a prophylactic mastectomy. She lost her mother, grandmother and aunt to breast cancer and she feels by doing the surgery she can possibly save her life from that cruel disease. I know her decision comes with lots of controversy. I know because I too made that decision four years ago. In my story I lost my mother to breast cancer (when I was 15) and I discovered (as I was doing her family tree when I was 36) she had 4 aunts who died from the disease. On top of that my older sister developed it and has been the only survivor. Ironically, my sister had the genetic test and discovered she was not a carrier of either of the two known breast cancer genes. I am a strong believer my family’s gene has yet to be discovered considering 6 generations of women in my family had breast cancer and all of them lived in different areas (so environmental can’t be used as a conclusive reason).
For those of you who want to judge her decision (and mine) don’t be so quick until you have walked a day in her shoes. The fear is so powerful especially when you have seen that disease strike so many of your family members. I watched my mother struggle physically as well as mentally after she was diagnosed with breast cancer. I also witnessed my sister’s struggles with it. I knew I didn’t want to walk in their foot steps if I could help it. I didn’t want to be the next victim. I felt I needed to arm myself and get as much information as I could to see how I could be proactive. I wanted to be one step ahead instead of sitting back and possibly waiting my fate. If there was a treatment or something else I could do to reduce my chances, then hell, I was going to do it. Why wouldn’t I? How many more signs did I need to prove my chances of getting the disease? It was enough for me to have 6 generations of women to fall victim to such an ugly disease. I didn’t want to wait any longer.
After getting several opinions and doing lots of research I was devastated to discover removing my breasts was the only option which gave me the highest chance of not getting the disease. Sadly with all of the money seemingly going to breast cancer research we are not much farther along as far as preventing (let alone for a cure). Mammograms are antiquated but are still our only main way of screening. It pissed me off but what could I do? Funny enough, I had thought for years I’d have the double but I had hoped when the time came I would have had other options. Now, I do want to make it clear there were a couple of other options but they would not have benefitted me. For example there was tomoxifen. The problem with that was it’s successful on tumors which are hormone driven which in my family the tumors had not been. Plus, the side effects were terrible. Then there was the option to have mammograms, sonograms and MRI’s on a regular basis. Well, considering my age and how many I already had, there was some danger in having so many over time. The only option that was definitive in lowering my chances by 97% was the double mastectomy.
Listen, I wasn’t blind to the fact that many people thought I was crazy to make such a “drastic” decision over something they felt may not happen. What if I never got breast cancer and here I had done the surgery? It is interesting that the norm in our society is to “wait and see”. But, how many lives does that attitude end up taking in the end? Plus, people, how many more clues did I need? There had already been 6 women before me in my family. Why would I want to play Russian roulette with my life? Gosh, if I were in the business world and I had seen 6 possible clues the stock market was going to crash, I wouldn’t just wait and see. My livelihood would be far more important. Therefore, I would do what was needed to secure my wealth. Well, I view my life and those 6 women in my family who had breast cancer the same way. I just couldn’t risk waiting and seeing when there were so many clues right there in front of me.
Even though I felt I had substantial proof my chances of getting the disease was high there was another factor which so many of my friends and family failed to realize. What about the fear women like me carry around? A huge factor in my decision to have a prophylactic mastectomy was about my emotional well being too. At the end of the day when I put my head on my pillow did I believe I had done all I could have to live a full and healthy life? Each night I always had that fear of possibly getting the disease. I had a young son and a partner I wanted to be in their lives for years to come. For me it was a no brainer because I was ready to stop being scared. I had been carrying it around for way too long- ever since my mother died. There was never a day that went by where I didn’t worry and it was exhausting.
Listen, I’d be lying if I said I did the surgery without any question or concern. Gosh, on the contrary! I wanted other options and if there had been, I would have taken it. To choose to have my breasts removed was drastic and by no means a choice I wanted to have to make. I was terrified. Leading up to the surgery I started having panic attacks. I was choosing to take my own breasts to the gallows and it was a very difficult thing to do. They were a part of me and even with all of their imperfections they were mine. I was choosing to have a part of me chopped off and making that decision was not taken lightly. But at the end of the day I had to make a decision based on the facts I was given. Five women in my family died because of breast cancer and my sister who also ended up getting it at 37 years old was the very youngest of all of the women. I was 38 and needed to make a decision. I felt very strongly I wanted to be proactive. I did not want to play the game of Russian Roulette. And so at the age of 38 I had a double mastectomy with reconstruction. The kind of reconstruction I had was where they placed an expander behind my pectoral muscle. Over a 3 month period they slowly expand it by injecting saline every 3 weeks or so. The pectoral muscle eventually expanded far enough to become part of the inner tissue of my new breasts. At the end of the 3 months I had another surgery where the expanders were removed and implants were put in it’s place. Now for those of you who don’t know what that means, let me explain. Because my pectoral muscle is no longer hidden behind my breasts, I can now independently move my breasts. Yep, that’s right. I have been given a new talent. Just one of the perks (no pun). I’m sorry if that was tmi. I enjoy adding a little humor to all of this.
In all seriousness though, when I got home from my second surgery I was hit with a wave of emotion that I couldn’t understand. Where the hell did it came from and why? My partner, Carol, held me as I cried. After a few minutes she whispered, “You can breathe now, MaLea. It’s over. You don’t have to worry anymore.” It was a defining moment for me because I realized she was right. I didn’t have to live the “wait and see” game anymore. The power in knowing breast cancer no longer had control over me was an incredible feeling to say the least. A huge weight had been lifted off of my shoulders ( if only it could have come off of my hips, arse and thighs too) and I felt free. For the first time in many many years I was finally freed from the oppression of a disease that took my mother away and changed my sister’s life forever.
Listen, I haven’t walked away from this experienced unscathed. There has been a price in freeing myself from the fear of breast cancer. I have been left with two long scars across my breasts and I there is no longer an areola or nipple. I have muscle cramps in my breasts because my pectoral muscle still wants to go back to it’s original location. When I get cold, my pectoral muscle shakes which means my breasts shake. And lastly as a result of my surgery I can no longer feel Carol’s soft touch across my breasts during our intimate moments. Even so, I have never looked back or second guessed my decision. Unfortunately, I had to lose something of mine in order to gain a new outlook on life. I suppose you could say that was the trade off (whether I like it or not).
For all of the women out there who have had to make or are making the difficult decision of having a double mastectomy, please know you are not alone. There are many of us here who stand quietly with you in solidarity. I have to tell you, taking life by the breasts (horns) isn’t always easy but the life it saves may just be yours.