SINGAPORE: To an onlooker, Alex (not his real name) would appear to be a fussy eater with a preference for smaller, more frequent meals.
But he does not have a choice.
Without a stomach, he never feels hungry and has to eat at appropriate intervals while at the same time being careful not to overeat.
The 37-year-old consulting engineer had his stomach removed in May 2015 after a genetic test showed he had a gene mutation that meant a high chance of getting a hereditary cancer. Alex, who is from the United Kingdom and a Permanent Resident here, did the test at the National Cancer Centre Singapore (NCCS) in 2014.
He had earlier found out that his family has a history of a genetic mutation that leads to a high risk of lobular breast cancer and diffuse gastric cancer, a type of stomach cancer.
Alex witnessed his paternal uncle die within six months of being diagnosed with diffuse gastric cancer. He also lost his aunt to lobular breast cancer.
It is not a certainty that he will get diffuse gastric cancer, although he was told by doctors that if he has the mutation, there is an 80 per cent chance he will get the disease.
“When the result of the test came out positive, I was just kind of resigned to it. I mean, I knew it was coming,” he said.
The alternative was a “death sentence”, so opting for surgery to remove his stomach was an “easy” decision, he added.
Alex had also seen the positive effects of the surgery on his brother who had his stomach removed in 2014 after testing positive for the mutation. He said the surgery did not affect his brother’s quality of life.
“He has done a 100-mile (161km) run without a stomach. And he’s done 24-hour sailing races,” Alex said.
Alex himself leads a healthy and active life, squeezing in a game of squash when he can.
“I didn’t want to be put in the position of ‘oh, we found your cancer and you have three months left’. What’s that, it’s nothing right?” he told CNA.
It proved to be the right decision. A biopsy on his stomach showed he already had early stage gastric cancer.
Dr Wong Siew Wei, a consultant medical oncologist at The Cancer Centre, said that hereditary diffuse gastric cancer is “highly aggressive, presents late and carries a poor prognosis”.
The lifetime risk of diffuse-type gastric cancer for carriers of gene mutation from families with hereditary diffuse gastric cancer is estimated to be 70 per cent for males and 56 per cent for females, Dr Wong said.
He said that this particular hereditary cancer is hard to detect at an early stage as the cancer is located beneath healthy-looking stomach lining.
Patients with early stomach cancers typically show very little symptoms or experience non-specific symptoms such as fatigue, bloating and indigestion, he added.
MANAGING MEALS POST-SURGERY
Alex was back at work 10 weeks after his surgery, which included five days recuperating in Singapore General Hospital.
Living without a stomach required some adjustments, he said. Because he never feels hungry, Alex must remember to eat.
“When I get distracted. I can go eight hours without eating anything and never feel hungry, until I start to feel faint. I have to mentally manage my food,” he said.
It has also affected his weight. Alex, who is 1.81m tall, weighed 85kg before his operation and was 66kg at his lowest, after a bout of food poisoning.
He weighs about 73kg now and tries to maintain it,but he also has to be careful not to overeat. Doing so will cause him to feel an intense pain about 20 minutes after his meal. In the years since his surgery, he has learnt not to do that, he said.
Without a stomach to act as a storage space, Alex can only either eat or drink at any one time – about two-thirds of a main course or 250ml of water. He also has to forgo the dairy-based desserts that he loves, he said.
Eating these desserts would mean rushing to the toilet. He also has to watch his sugar intake. It makes him perspire profusely even in an air-conditioned room if taken in excessive amounts, he said.
Alex takes the changes he has had to make in his stride and even manages some humour.
“When people who don’t know about my surgery ask me to eat more, I tell them ‘I don’t have the stomach for that’,” he quipped.
WHO SHOULD GO FOR TESTING
Dr Joanne Ngeow, head of Cancer Genetic Service and senior consultant medical oncologist at NCCS, said that 5 to 10 per cent of all cases of cancer are caused by genetic factors which result in the development of hereditary cancer. When a person carries a faulty copy of a cancer gene, this could lead to a higher chance compared to others for them to develop certain cancers, she added.
“In a family where there are multiple people with cancer, anyone who has been diagnosed with cancer should consider genetic testing,” Dr Ngeow said.
Someone who developed cancer below the age of 50, has two or more types of cancers or has rare cancers should also consider such testing, she added.
Others who should go include those who have “bilateral” cancers, meaning the disease occurs in both of a pair of organs – both ovaries or both kidneys – at the same time.
If a faulty gene has not been identified in the family, genetic testing is usually first done on a family member who has been diagnosed with cancer. This is because the chance of finding a faulty gene is higher in them than other unaffected family members, NCCS said.
Alex with his daughter. There is a 50 per cent chance he passed on a gene mutation to her. (Photo: Alex)
“The results (can) come back as positive, meaning that we found the reason why they develop cancer. It can be negative, meaning that we didn’t find the genetic change. Or it can come back as uncertain, meaning that we found a change. It may or may not be what’s giving rise to the fact that they had developed cancer,” Dr Ngeow said.
In explaining why these groups of people should go for such testing, Dr Ngeow said: “It’s about taking charge of your own narrative.”
Using an analogy, she said: “If there is a big pothole in front of your car and you turn on the lights, you see the pothole, you know how to avoid certain things, as opposed to, when you don’t turn on the lights – you don’t know that the pothole may be there.”
“It’s very important before anyone who does genetic testing that they actually go for what we call a pre-test counselling session with one of our genetic counsellors,” she said
Genetic testing is usually done through a blood test, but can be done with a saliva sample as well. The cost ranges from about S$500 to S$1,000, she said. She added that NCCS offers financial subsidies on a case-by-case basis.
UNMET NEEDS IN LOOKING AFTER PATIENTS WITH CANCER RISK
While the NCCS has set up support groups for patients who are at risk of cancer, Dr Ngeow said there are “many” unmet needs in helping look after these patients.
Currently, people like Alex can opt for risk-reducing surgery, like removing a body part, which is the easiest way to manage the cancer risk.
Dr Ngeow said she hopes to do more for these patients. This includes identifying new and alternative ways of preventing and detecting hereditary cancers, and minimising the need for risk-reducing surgery for patients if possible.
“This is an area that requires more research, but lacks the necessary funding. Modifying lifestyle factors, that may increase or decrease their cancer risk, have yet to be identified,” she said.
She added that there is not enough manpower to take care of such patients as well.
“There are very few people trained specifically in this, we don’t have enough genetic counsellors,” she said.
Alex, who is married with a two-year-old daughter, wants her to be tested too as there is a 50 per cent chance he would have passed on the mutation to her.
But this would be done when she is about 30 years old as the gene mutation in his family happens at a later stage in life, he said.
My daughter will be 30 in 2047. That’s a long time in medicine, let’s give medical science the best chance,” he said.
