Should I Voluntarily Have A
(Editor’s Note: With our Annual Breast Cancer Survivor Stories starting one week from today, (If you’ve got a story to share, we want to hear it . . . drop us a line here!) we thought it would be a great time to share this question that came in a few years ago from a GEM Reader. The piece was published in its original format on February 4, 2011.)
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:
1. 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.