Life with a gastrectomy.

pt HealthMiscellaneous

Last week, we told you about how an upper endoscopy revealed that Rachel had Hereditary Diffuse Gastric Cancer.  This week we’ll tell you a bit about gastrectomies: why this is the best solution for people with CDH1 mutation and/or HDGC and what it involves.

“Although this procedure is complicated and commonly leads to weight loss, diarrhea, altered eating habits, and vitamin deficiency, it is possibly the only method to prevent stomach cancer.”

– excerpt from the No Stomach For Cancer Hereditary Diffuse Gastric Cancer information sheet.

What is a gastrectomy?

A gastrectomy is the complete removal of a person’s stomach. To most of us, this seems like an incredibly drastic surgery. However, we are hearing more and more about women who – when testing positive for the BRCA gene mutation – choose to have their breasts removed (referred to as a mastectomy or double mastectomy) to lower their chances of getting breast cancer. Angelina Jolie is one recent celebrity example. It’s a prophylactic surgery that increases survival rates among those with the BRCA gene mutation drastically.

In the case of a person with the CHD1 gene mutation or with HDGC, it is the exact same situation. To put things in perspective, if you have the CDH1 gene mutation, you have an 80% risk of developing gastric cancer. In addition, women – like Rachel – have a 60% lifetime risk of developing lobular breast cancer. If you consider that Rachel is only 29 and has already been diagnosed with HDGC, you can understand that stomach removal is literally a choice between life and death. Even if an individual with CDH1 undergoes a stomach biopsy that comes back negative, in 9 out of 10 cases, biopsies done on the stomach after it has been removed find cancer.

In her personal blog, Rachel states:

“It is a weird thing to say but I am actually looking forward to having my stomach removed.  It is unfortunate that it has to be done, but I’d rather have it taken care and know it has no chance of spreading vs. playing russian roulette.  Knowing that I have cancer right now (even though it isn’t likely spreading anywhere else) is scary.  Every week that passes is one more week closer to having a peaceful mind without stomach cancer.”

So how do they do a complete stomach removal?

In essence, part of the small bowel (that is initially cut at the duodenum) is extended straight up to meet the esophagus. The cut end of the duodenum is reconnect to the small bowel. Usually the procedure takes 4-5 hours followed by a hospital stay of 7-12 days.

What happens after surgery?

It’s quite a recovery. One of the things Rachel has mentioned is that she thinks it will be really tough not to be able to eat for the first 5 days. No ice, no juice, no water…nothing. Because the surgery is so new, the body needs the time to undergo the healing process that will allow the internal reconfiguration to seal itself. Anything consumed prior to this process being completed can be lethal due to the possibility of leakage. An X ray is taken before food and drink are allowed, just to be completely sure everything has healed as it should.

Right upfront, we can say that life is not the same. Eating at the beginning can be uncomfortable or painful. The sensation of hunger ceases to exist and is replaced by feelings of weakness and emptiness. In most cases, gastrectomy patients have to force themselves to eat until eventually the desire to eat returns.

In order to avoid side effects like nausea, vomiting, cramps, abdominal pain, diarrhea, etc. patients must eat 6-8 small meals a day. Drinking an hour before a meal (rather than during the meal) is recommended. And you have to eat the way your mother taught you: small bites and chew everything thoroughly. Food tolerance is different from patient to patient, but most patients find that they can’t tolerate foods high in sugar.

Within the first 6 months, patients usually experience a weight loss of 20% of total body weight. This is permanent. While this might sound great, people like Rachel – who are petite with very high metabolisms – do everything they can to gain weight prior to surgery so that the weight loss is not as drastic. This is why Rachel is trying to eat all the things as often as possible!

The most important thing to remember about this surgery is that it allows people with CDH1 or HDGC to survive. It’s considered a cure for HDGC.

From pt Health’s perspective, we are so grateful that this option exists. Rachel is one of our most committed, talented, and capable team members. Every day that she works in the clinic, she improves the lives of our patients. Having her on the pt Health team makes us a better company.

Next week: We talk to Rachel about how physiotherapy will help her recovery.

NoStomachForCancer: to make donations towards stomach cancer research or get more information:

Rachel’s blog:

Information sheets:


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