ptenOver the years, I’ve encountered people who apparently are rarely sick and have never taken a single prescription medication. For me, it has been akin to finding a unicorn. But apparently I’m the rare one.

Back in the days of yore–when medical files were still in paper format–you could easily spot mine on the shelf as it was the largest, more like the size of the Oxford dictionary than a regular file. I was in and out of the doctor’s office so much that he joked about naming an examination room after me. That trend has never really stopped.

Indeed, I’ve seen doctors often over the years, had numerous surgeries, and taken many prescription medications. One commonality I’ve heard from all of the medical folks is just how “weird” I seem to be. The puzzled doctors will tell me things like…

I’m not sure what’s wrong with you, but here’s a pill. I hope it works.

I’ve never seen a tumor grow that big!

We think you have xxxx, but we’re not sure. You’ll have to be in the hospital for awhile.

Having a second cancer is just so strange!

Yep, and now there’s the PTEN, which seems to explain all of the weirdness.

Speaking with my surgeon last week–the first time since the results of the genetic test were released–I found that much of the conversation regarded my mutation.

“You’re my first PTEN,” she said, seemingly a bit surprised by it all. She went on to talk again about the oddity of my second cancer, with it being a totally different cancer and not a recurrence. “You just don’t see that,” she stated.

Yes siree, I’m special.

Because of the PTEN mutation and the fact that this is my second go-around with cancer, I will be having a double mastectomy in December. The cancer risk is just too high at this point to do a more conservative surgery. Too, the types of reconstruction are even limited by the PTEN. Having a foreign object like an expander implant in my body is just not advisable.  Due to this and other factors, I will not be having reconstruction at this time.

Although I’ve often desired to be extraordinary in other areas of my life, such as school and work, this is one part of my life where I would prefer to be decidedly average.

8 thoughts on “PTEN

  1. Boy, you write as I wish I could! So well written. You know, one of the many things with CS is a 2nd (different) cancer. I wish more doctors KNEW this! That’s why I tweet and blog, to hopefully bring others to the awareness of this “Rare Disease”.

      1. Oh my. I am so sorry. One of my parents have passed away and the other one isn’t interested in getting tested. I am either a spontaneous mutation or…..who knows. Ugh.

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