I live every day to the fullest’
When Richard Caisey started having difficulty breathing while playing cricket a decade ago, he thought he was having a bad asthma attack.
But an X-ray revealed a mass in his chest wall that was diagnosed at The Johns Hopkins Hospital in the United States as a rare cancer of connective tissues.
Doctors did more tests and by delving into his family history discovered he had a genetic cancer disorder that greatly increases the risk of developing different cancers.
Despite four operations to remove tumours and five bouts of chemotherapy, he remained positive and determined to fight the condition that had claimed the lives of many of his family members.
“It has been ten years since my initial diagnosis and I live every day to the fullest and advise anyone who has been diagnosed with an illness, no matter what it is, to never give up and always think positive,” said the 32-year-old, who spoke to The Royal Gazette as the island marks Movember to raise awareness of men’s health issues.
“The minute you start doubting it everything goes downhill. I’ve always just been like anything that had to be done, let’s just do it and move on.”
Mr Caisey, who works at BAC, was 23 years old when he found out he had Li-Fraumeni syndrome.
“My father passed away in June 1988 from another rare cancer, chondrosarcoma,” he explained, adding that many of his other family members have died from cancer.
“At that time we didn’t know about the Li-Fraumeni syndrome, that it was hereditary or what effects it has on the body.”
Mr Caisey, of Southampton, received the diagnosis after having major surgery at Johns Hopkins to remove the tumour in his chest, which doctors believe had been growing since he was about 10.
He recalls being told afterwards “the only way you will get over it is if you want to get better”. “From there it’s always just been work at it and keep moving forward,” he said.
Six weeks later, he started chemotherapy. He was given three different drugs simultaneously for four months, travelling back to Johns Hopkins every three weeks for the treatment.
However, a CT scan at his next appointment in April 2007 revealed about twelve tumours “of various sizes” growing in his chest and he started a second round of chemotherapy in Bermuda.
He tolerated the drips well. He never felt sick although he did lose his hair at one point.
But he started suffering severe side-effects when his doctors changed his medication to a newer drug after discovering that half the tumours had grown while the other half had shrunk.
“After taking this for a few weeks I developed hand/foot syndrome, which is pain and stiffness in the joints of the fingers and extremely sore and calloused feet,” he explained.
“The dose had to be stopped until I recovered and then it was reduced, but I had to keep taking it.”
When he returned to Johns Hopkins in September 2007, the cancer had stabilised although he was still struggling with the side-effects of the medication.
He had to occasionally take time off work until the pain subsided and he went for regular follow-up appointments every three to four months over the next two year.
In 2010 he was able to stop the chemotherapy, which had also given him high blood pressure, but he continued his regular check-ups.
They were about to be spaced out to six months, when Mr Caisey noticed a pimple on his left thigh that even his doctors mistook for an ingrown hair at first. It turned out to be leiomyosarcoma — a totally different cancer. “It was a shock and in January 2013 I had surgery to have it removed.
“We found out that when you have Li-Fraumeni syndrome different cancers can appear in any soft tissue or muscle at any time.”
He continued his follow-up appointments and a CT scan in May 2014 showed that a previously dormant tumour had started to grow.
A PET scan also revealed a tumour on his right lung and he had surgery to remove it in June 2014.
He kept up his four-monthly check-ups and at his last appointment in September, he was informed that his follow-up appointments would now be every six months.
Aside from the cancer, the avid sportsman, who plays on the Robin Hood Corona League team, had always been healthy and he credits this with helping him heal fast and bounce back after treatments. “I had always been active in sports, playing cricket, soccer, baseball and volleyball,” he said, adding that he even ran cross country.
He also had the support of his family, with his mother being there every step of the way.
But he knows the cancer could return at any time and he routinely checks for “any lumps and bumps” that should not be there.
“I just keep my fingers crossed and hope that it doesn’t come back. But even if it does, we’ll just have to battle that too.”