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Anyone have CDH1 mutation? Did you have risk-reducing gastrectomy?
Cancer | Last Active: Oct 24 8:15pm | Replies (9)Comment receiving replies
@loispags, how was your recovery from surgery? Was it hard to make the decision to have surgery or not?
Replies to "@loispags, how was your recovery from surgery? Was it hard to make the decision to have..."
@colleenyoung
It was a total surprise to get the mutation news. It took a good year to recover but wanting to live vs living with cancer was a no brained. After learning what others are dealing with I feel fortunate. Just saw my surgeon yesterday for follow up and reduced me to once a year. I still see the oncologist 2x a year. I will be follow up with an endocrinologist for osteoporosis and hematologist for cdh1 bloodwork in the spring. I eat most everything which takes time for the body to recover but you’ll read of stomach less people who are 20-30 years from surgery. Great groups on FB. Anyone can message me. My surgery was at New York Presbyterian/Columbia 12/2022.
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@colleenyoung
It takes a good year. My TG was 12/2022. Weight loss and muscles and malabsorption was an issue but I have no regrets. Just got back from Italy trip. Decision was immediate after I learned I had the mutation I was 79 now 82.
No cancer in my family so I was shocked. My son inherited the mutation is under surveillance. Who knew?!