I have read about your own health challenges and thought you might be able to help me as I am facing one of my own.
I recently found out that I have Cowden’s disease. It is a mutation in the PTEN gene. People who have this are more susceptible to breast cancer. Three doctors at Mayo in Jacksonville, FL are telling me to get a double mastectomy as a preventative measure. What is your opinion on my situation? That seems so drastic and I feel like I should just wait until I have an actual cancer diagnosis. I recently had a hysterectomy for uterine cancer and a thyroidectomy. I was under a cancer scare for a collectomy but my path report came back benign.
As you can imagine, this is an awful lot to digest. What would you do if you were in my shoes?
Confused and concerned
Hey there C and C:
First I want to commend you for taking a pro-active stance. One of the things that literally sends me into orbit is when people bury their heads in the sand and say, “I’d rather not know.” It is the complete opposite of where they should be. They should not fear KNOWING they have cancer; it’s the NOT knowing that should keep them awake at night. Cancer treatment and therapies have come light years in just the last decade and more are on the way. I believe that the time is nearing that we will have a cure for this disease, making drastic surgeries like yours and mine unnecessary.
In my case I had a mother and father with breast cancer. I was also diagnosed with Hyperplasia Atypia, which is sometimes seen as a stage right before breast cancer. Those risk factors, coupled with multiple biopsies (I had four in four years) factored into my decision to have a preventive mastectomy in 2007. I did not have the gene (though point of note; to date there are just two genes associated with increased risk for breast cancer, BRCA1 and BRCA 2. There could be many more that are as yet undiscovered.) So even though I did not have either gene, clearly SOMETHING was going on and I needed to take action and so I did. In your case, here’s what I would recommend
ARM YOURSELF WITH INFORMATION: As you know, preventive surgeries like mine are not to be taken lightly. You need to have as much ammo in the form of information as you can. I would talk to everyone, consult with several doctors (as you already have) and read a lot. Check out this great book, Previvors, written by strong women I am proud to call friends. You can also go online but please make sure the sources are credible; there’s a lot of junk out there that you may need to weed out.
SURROUND YOURSELF WITH A TEAM: That team should consist of medical professionals you trust and are comfortable with and friends who will be there when you need them. You mentioned that you have already seen to three doctors and they all recommend the preventive mastectomy. Were any of them geneticists? If not, I would suggest seeing one. They can take your family tree and health history and determine the risk of you getting breast cancer. The friends part of this is self-explanatory. Take the time to separate the real ones from the hangers-on.
MAKE THE DECISION: This is the truly difficult part because even when you have all of those other things in place, the decision rests solely on your shoulders. These are your breasts, this is your life; no one can tell you what’s the best course of action for you. But I will say this. I have never regretted opting for my mastectomy. My head was a mess as were my breasts from all of those surgeries. I wanted to play offense, not defense by waiting until I had a cancer I could prevent and I had a young family that needed me. One of the sobering realities of breast cancer is while a Stage 1 cancer is 97 percent curable, there’s still a three percent chance of a less than favorable outcome. That three percent was too big a risk for me.
I want you to remember a couple of things. First, don’t let anyone, in a white coat or otherwise, talk you into a decision you are not fully on board with. In my case, it was a process and it took all summer for me to finally make the decision to go through with the surgery. I had a wonderful doctor who reserved the surgical suite for January 9th, 2007 but he let me know we could cancel at any time. He gave me power over that decision and I love him for it. The second thing I would say is you have time. You don’t need to do this tomorrow, next week, next month or even next year. So work through it. Weigh the pros and cons, talk to women who’ve had the surgery, many are more than happy to show you the results (I know this from experience).
I hope I have been able to help even a little. Good luck as you wade through this information on your way to the decision. If I can help anymore, please drop me a line!
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