I have received what I jokingly refer to as my “Mutation Certification Letter.” Part joke, part reality. It is a letter from my genetic counselor explaining the PTEN mutation, along with the diagnostic criteria and symptoms of Cowden Syndrome. Additionally, the letter includes a list of the scans that should be performed in the future to screen for any problems that might arise.
As you can imagine, it is quite a lengthy letter. Part of the reason for the delay in receiving it appears to be that the letter was returned by the post office for insufficient postage. Yes, it’s huge.
Toward the beginning, the counselor describes Cowden Syndrome as a “cancer susceptibility syndrome.” Seriously. My radiation oncologist asked me if I felt like a “tumor factory,” and I had to nod in agreement.
Cowden Syndrome puts me at risk for a variety of cancers as well as having a second cancer, both of which have proven true in my case. My doctor said that the chance of my having Invasive Ductal Carcinoma (Triple Negative) and Inflammatory Breast Cancer were astronomical, however, even with the mutation.
Regarding the “second cancer,” I was a bit confused after reading the letter and the literature online. Does it mean a second breast cancer? Or another cancer elsewhere?
So I asked my oncologist if I had now fulfilled my “quota” for the second cancer. We both laughed a little at my wording of the question, and then she began to explain the studies. Most of the second cancers found have been in older patients; living longer, they are more likely to have another cancer, with or without a genetic mutation. Still the research does point to one thing: I’ll probably have yet more cancers in the future due to the PTEN mutation.
Attempting to lighten the mood a bit, my oncologist went on to say that I have a mutation, but I’m not a “mutant.” I responded that she was giving me radiation treatment and so I could become one soon, à la the Incredible Hulk. She seemed a bit surprised at my response, probably along with being a tad weary of radiation jokes.
What else can you do, though, but laugh about the craziness of it all? As Julie Manning says in her newly released book, My Heart: Every Beat Surrendered to Our Unchanging God,
“This life is truly just a breath.”
Frankenstein or not, I’m still here, and maybe something good can come out of all of this.