It was a bizarre experience, Jemma Caprioli explains, having to admit herself to Royal North Shore Hospital when she was neither sick nor injured.
Two weeks later she would be discharged, without her stomach.
The 30-year-old had a prophylactic gastrectomy to avoid developing rare and aggressive cancer that killed 12 members of her family.
An inherited mutation of her CDH1 gene meant Ms Caprioli had an 80 per cent risk of developing hereditary diffuse gastric cancer (HDGC).
The chance of survival is roughly 20 per cent once HDGC spreads beyond the stomach.
Ms Caprioli’s surgeon removed her stomach and attached the base of her oesophagus directly to her small intestine using a gastric bypass surgery called Roux-En-Y; a procedure most commonly performed as a radical weight loss treatment for obese patients.
“I’m constantly thinking, ‘am I taking out a healthy stomach?’ she told Fairfax Media before the surgery.
Scan showing contrast ink travelling through Jemma Caprioli’s oesophagus directly to her small intestine. Photo: supplied
“In a strange way, I’ve been hoping and praying that they would find something, some sign of cancer, to give me the motivation to confront this.”
They found it.
Two weeks after her surgeon delivered her stomach to a pathologist, their examination found microscopic and early-stage cancer cells. The cancer had begun to spread but had not yet broken through the stomach wall.
“I couldn’t believe it ??? over a month later I still don’t think it has really sunk in.
“I remember the surgeon said to me ‘you made the right decision at the right time’.”
Jemma Caprioli before her gastrectomy. Photo: Janie BarrettNo way to know
Ms Caprioli’s gastroenterologist, Professor Alex Boussioutas, said it was impossible to say how much longer Ms Caprioli could have waited before the cancer would have spread.
“This is the fundamental problem we have with HDGC,” he said of the elusive cancer that can be easily missed by endoscopes, which can only explore the surface of the stomach lining.
“Things are happening at much deeper layers, so we’re stuck with no test that is able to identify which patients will [develop the cancer],” Professor Boussioutas said.
“Almost all of them do progress, and once you get a full-blown, clinically obvious cancer the prognosis is really poor, said the HDGC specialist at Peter MacCallum Cancer Centre clinic and the Royal Melbourne Hospital.
Professor Boussioutas is seeking approval for a study that would investigate potential genetic markers that would help stratify patients’ risk to determine who would benefit from surgery and when. A recovery difficult to swallow
The digestive acrobatics Ms Caprioli’s body must now perform cannot be understated.
She endured a week of near-starvation because her new system was not tolerating food. The surgery had put pressure on her ribcage, making it hard to breathe, and she contracted pneumonia in hospital.
Her five-foot-tall frame shed seven kilograms as her body struggled to absorb vital nutrients and she developed anaemia.
“Keeping a positive frame of mind is the biggest challenge.
“People say ‘you look really well and healthy’, but they don’t see me when I vomit after food and the difficulties I have at times with eating.”
She has had to relearn what foods and portion sizes she can manage.
Her hunger cues are counter-intuitive. She craves sugary and starchy foods, but they trigger ‘dumping syndrome’, in which foods rush through the digestive system too quickly causing vomiting, cramping and diarrhoea.
“I found it really difficult because I would feel really hungry but I had no signals to tell me when I was full until it was too late.
“I would have reflux and burning and vomiting almost immediately, so going out at all was a no-no over the Christmas and new year’s season … the timing wasn’t the best,” she said.
Her system seems to be tolerating her lean, high-protein diet of quinoa, eggs, avocado and chicken. She also follows a strict supplements regimen.
Exercise was a fundamental part of Ms Caprioli’s life. Getting outside and being active was a powerful motivator for her recovery.
It took her seven weeks to return to swimming laps at her local Queenscliff pool. She could swim for 10 minutes at a time before waves nausea washed over her.
She now swims for 20 minutes, three times a week. She has started running again and recently went back to work at a marketing firm in North Sydney.
Jemma Caprioli has been slowly building up her fitness since gastrectomy surgery in November. Photo: Daniel Munoz
She has been sharing emails with other HDGC patients, including a young endurance athlete in New Zealand.
“He gave me a lot of motivation,” she said, and forwarded the athlete’s story to her brother Jason, an ironman competitor who also has the CHD1 mutation but decided not to have a gastrectomy.
“I think it’s probably still too early for him to change his mind ??? maybe in a year when he has seen me and my recovery we can have a serious conversation about it,” she said. The other cancer risk
Women with the mutation are also at significantly increased risk of lobular breast cancer, a carcinoma in the milk-producing glands.
The chances of a woman with CDH1 mutation developing the breast cancer by the age of 80 is 42 per cent.
Like HDGC, lobular breast cancer is difficult to detect and Ms Caprioli will need to have regular MRI scans to monitor her glands and breast tissue.
RCA co-founder Kate Vines said Ms Caprioli’s decision to remove her stomach was “beyond comprehension” and ultimately saved her life.
“How tough is it that rare cancer patients would need to go through something like this,” Mrs Vines said.
“We see a lot of patients who have had their legs amputated, large portions of their bowels removed of bladders removed and rely on colostomy bags. Having such major interventions can have a huge impact on quality of life.”
It’s often the very fact that the cancers are rare that leave patients with few treatment options, Mrs Vines said.
Ms Caprioli is determined to complete the Mount Kosciuszko Challenge, a 21-kilometre trek to the summit – 2228 metres above sea level – in March to raise awareness and fund for Rare Cancers (RCA).
More than 52,000 people are diagnosed with rare or less common (RLC) cancers every year in , defined as cancers with fewer than six cases, and six to 12 cases per year per 100,000 population respectively.
An estimated 25,000 people die from the conditions annually.
Roughly 400 people will join the challenge this year, Mrs Vines said.
Ms Caprioli hopes the event will motivate her physical and mental recovery.
“I also want to do anything I can to raise awareness about HDGC and other rare cancers. Sharing knowledge is going to make a huge difference for people dealing with these [diagnoses],” she said.