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?

@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?

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.

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?