I carry the CDH1 genetic mutation, which puts me at a very high risk (80%) of developing a hard to detect form of gastric cancer (Hereditary Diffuse Gastric Cancer), but three years ago, at the age of 40, I decided to do what the doctors recommended and have my stomach removed as a preventative measure. Adjusting to life without a stomach was a challenge, but things improved over time.
With the CDH1 mutation, in addition to the high risk of stomach cancer, the risk for developing lobular breast cancer is 40-60%. So for the past five years, every six months I alternated between having a mammogram and a breast MRI to screen for potential abnormal areas.
In late March of this year, following my most recent breast MRI, a suspicious spot was discovered, and a biopsy showed it was indeed a very small spot of invasive lobular carcinoma of the breast. But, since it was found very early, I was truly fortunate. Because of my high genetic risk, I decided to have a double mastectomy with reconstruction.
The surgery itself went smoothly with no complications. The cancer did not spread beyond the breast tissue. But there were areas of lobular carcinoma in situ (LCIS) In areas of both breasts. So my decision to have a double mastectomy was justified. And on top of that, I will not need any chemo or radiation therapy!!!
I am a board member of a great organization called No Stomach For Cancer which works to increase awareness and support families affected not only by the CDH1 genetic mutation, but all types of gastric cancers which are in desperate need of more research. I look forward to continuing my work with them, staying healthy, and loving and cherishing the people in my life.
Merrimac, MA
