Melani Vincelli, 57, loves marzipan, but after surviving stage 4 gastric cancer and having her stomach removed, marzipan no longer loves her.
Still, every now and again, the New Jersey resident makes an exception for the sweet confection made of ground almonds. One Easter several years ago, she bought a cake coated in marzipan and eagerly ate some. After, the experience was not positive.
“I got so sick,” she says. “I was laying on the couch like someone shot me. I was profusely sweating and nauseous to high heaven, but it was worth every bite.”
Such are some of the drawbacks of life without a stomach. It’s a give and take, learning what your body can and can’t handle. It’s a journey that Vincelli is grateful to still be on.
Vincelli was diagnosed with stage 4 (or stage IV) stomach cancer in June 2009, when after losing more than 40 pounds and vomiting constantly, an endoscopy discovered that three-quarters of her stomach was filled with tumors. The cancer had spread to her liver and her lungs. After six rounds of chemotherapy, she was declared cancer free, but her surgeon oncologist advised what seemed like a drastic measure: a complete gastrectomy. If they didn’t remove her stomach, he felt she would likely face a reoccurrence of the cancer within a year.
At first it was hard for Vincelli to fathom how she would survive without a stomach. She was afraid that she would never be able to eat normally again. But believing that surgery was her best option for long-term remission, she went through the procedure.
For her, it’s been worth it, she says.
“Living without a stomach isn’t a piece of cake,” she says. “Are there trials and tribulations? Absolutely. But I was told I had six to nine months to live and that was almost nine years ago. And now, I eat like a pig sometimes. But I’m very much in tune with my body, and I know what I can and can’t eat.”
What is a gastrectomy and when is it performed?
The extent of surgery and how much of the stomach, surrounding organs, and tissues are removed is dependent on what type of cancer the patient has, where it is located, and how far it has progressed, says Michael Choti, M.D., professor of surgery at University of Texas Southwestern Medical Center. (Dr. Choti did not treat Vincelli.)
“Stomach surgery, removal of part or all of the stomach, is still the mainstay of the curative approach to stomach cancer,” Dr. Choti says. Often, surgery is combined with chemotherapy and sometimes radiation, he says.
Gastrectomies are usually performed on patients where the cancer hasn’t spread, he said.
Stomach cancer may be located in the lower area toward the intestines, in the middle of the stomach, or in the top of the stomach, near or in the esophagus.
If possible, opting to remove only part of the stomach makes for a much easier recovery, he says. The remaining portion of the stomach will eventually expand to accommodate normal eating, he says.
If the entire stomach is removed, the lower intestines are brought up and connected directly to the esophagus. However, while recovery can take longer, patients who have their whole stomach removed often do remarkably well over time, he says.
“The main function of the stomach is really storage capacity, it doesn’t provide a ton of digestive aspects,” Dr. Choti says. “Some folks, a year or two later, can eat a whole cheese steak and are doing surprisingly well. But some patients will always have to eat smaller meals.”
Surgery and immediate recovery
Vincelli spent two weeks in the hospital following her total gastrectomy, which is longer than normal because she developed an infection at the surgery site. It took time for her intestines to adjust to not having a stomach and for her to get enough nutrition through eating.
“The body is still looking for the stomach and the intestines are in a tizzy,” Vincelli says. “The amount of food that can be eaten is severely diminished. You have to take itty, bitty little bites and chew it thoroughly.”
Many patients initially lose weight following surgery, especially if they’ve had their stomach completely removed, Dr. Choti says. In total, between the cancer, chemotherapy, and the complete gastrectomy, Vincelli says she lost about 80 pounds.
Common concerns following gastrectomy
After surgery, patients should eat a bland diet of easily digestible foods and gradually add new foods. In general, sugary foods are not well tolerated. Some patients experience “dumping syndrome,” where the body has a hard time regulating how carbs and sugar are digested and instead they are released quickly into the system, causing a person to feel ill, Dr. Choti says.
“I advise people keep a food log and see what foods are tolerated. Everyone is a little bit different. And it improves over time,” Dr. Choti says.
It’s also important that gastrectomy patients avoid drinking and eating together, as fluids fill you up, leaving less room for food, Dr. Choti says. Instead, patients should sip drinks between meals, he said.
This practice takes some getting used to, Vincelli says.
“In the beginning it was extremely difficult not to eat and drink together,” she says. “You don’t realize how much you eat and drink at the same time until you can’t.”
Also, many patients experience reflux following gastrectomy and should avoid eating right before sleep, Dr. Choti says.
Another concern is vitamin B12 deficiencies. The stomach produces a protein that allows the intestines to absorb B12. If you have a complete gastrectomy, you’ll need to get a B12 supplement (usually by injection) every several months, according to Dr. Choti.
Dr. Choti recommends his patients talk to a dietitian following surgery and get involved in a support group to learn what has worked for others. For Vincelli, an important resource has been Debbie’s Dream Foundation (DDF), a nonprofit organization focused on raising awareness and increasing education and information about the disease.
Learning a new way of life
Vincelli still eats small, frequent meals and snacks. She also tries to eat protein with her carbs. She continues to struggle to remember to sip between meals, and on a cruise in 2017, she became dehydrated and ended up with a serious urinary tract infection.
Strangely enough, she can now eat several foods that gave her indigestion before she had her stomach removed. But spaghetti is a no go and she has to be careful with spicy foods, and sugary foods, like marzipan. She has also become lactose intolerant.
“I love ice cream, and I know exactly how much I can have before I get sick,” she said. “I can’t drink milk, but I can eat cottage cheese and Greek yogurt and gelato, and I get along well.”
Vincelli acknowledges that she is a rare case, having survived so long following a stage 4 diagnosis. But she feels she was built to lose body parts and keep going. Besides losing her stomach and gall bladder, she also had a full hysterectomy following irregular cycles when she was 40. Then in 2014, she had a bilateral proactive mastectomy after she tested positive for the BRCA2 gene mutation. In June 2017, she had her thyroid removed due to Hashimoto’s disease.
What is definitely still intact is her sense of humor and her determination to enjoy life to its fullest.
“I am an open book,” she said. “I feel I survived my journey to be an inspiration and hope to others.”