Anyone have CDH1 mutation? Did you have risk-reducing gastrectomy?

@branwhar, as you likely have learned, having a CDH1 mutation means that you are at high risk for developing an aggressive form of stomach cancer called hereditary diffuse gastric cancer (HDGC). The CDH1 mutation also puts women at risk for a certain form of breast cancer called lobular breast cancer. To help you connect with others, I pulled your comment into a discussion on its own into the Cancer support group and the Breast Cancer support group.

@branwhar, it sounds like you are in treatment for breast cancer and your team is recommending risk-reducing gastrectomy. Do I have that right?

I can imagine that you feel nervous about having a total gastrectomy. Here are a few related discussions that you may wish to read and/or comment in:
- Anyone familiar with a Gastrectomy (total stomach removal)?
https://connect.mayoclinic.org/discussion/gastrectomy-1/
- Total Gastrectomy for stomach cancer: What can I expect?
https://connect.mayoclinic.org/discussion/total-gastrectomy/
It's not an easy decision to undergo major surgery as a cancer prevention. I think @loispags @sarahinoz @biillgraves may have experience to share.

@branwhar, has the gastrectomy already been scheduled? Will you complete chemotherapy first? What questions do you have?

@colleenyoung I am doing chemo now and waiting for the consult with the surgeon to see how we are going to tackle this. Thank you for the assistance.

This is Bill Graves I have GAPP. Way too many polyps to count. I am
currently a patient at MSKCC and John Hopkins.

Ive had over 200 samples taken from my stomach for biopsy. Cancer has not
yet been confirmed and I still have my stomach.

How long i have it is anybodies guess.

Our family tree is riddled with gastric cancer

Happy to talk if you want.

@biillgraves there are several great Facebook groups that are cdh1 and gastric cancer. Wealth of information and sharing.

Facebook groups on cdh1 mutation (no cancer in my family but I have the mutation and had stomach removed 12/22. Doing well. Check out the groups.

@loispags, how was your recovery from surgery? Was it hard to make the decision to have surgery or not?

@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?!

You’ll need to educate yourself. Lots of FB groups on cdh1 and stomachless folks. As u may know cdh1 can cause lobular cancer. I always check her to see what doing on cdh1 mutation. I know I posted before but I don’t remember what I days. Check out the other groups. Good luck

@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.