Dealing with a dire diagnosis in a new country

Tajimi, Gifu Pref. – Any illness is stressful, and if you are unlucky enough to develop something rare and life-threatening while abroad, differences in language, health care systems and treatment can only multiply the fear and anxiety you’d normally feel.

That was the case for Niall Breathnach, who, in 2015, developed a urinary tract infection that wouldn’t clear up and, by the end of the year, had also begun experiencing lower back pain.

“Being 35, I put it down to getting older,” says Breathnach, who adds that he got increasingly worried as the pain continued and spread to his groin in the years that followed.

“I went to the local urologist in Nagoya, who told me there was nothing to worry about, but the pain persisted,” he recalls. “It wasn’t debilitating, but would increase in intensity when I sat down. After a lot of persuasion from me, the doctor reluctantly agreed to schedule a CT scan.”

The scan found a 7-by-7-centimeter tumor on his spine. Referred to an orthopaedic surgeon, Breathnach was sent for an MRI scan.

“I’m sure you can imagine how long that week was,” he says with a laugh. “Apparently it looked like a Tarlov cyst, and the doctor said the chances of it being cancerous were very low and asked me to come back in a few months for another MRI, just to monitor things.”

That gave Breathnach and his wife some time to read up on Tarlov cysts, fluid-filled sacs that can grow in the spinal canal.

“They’re pretty rare but I found a doctor in Himeji (Hyogo Prefecture) who had operated on them successfully,” Breathnach says. The specialist took two minutes to un-diagnose him of that. “It wasn’t a cyst, and I’ll never forget the deeply concerned look on his face when he told me it was probably a bone tumor.”

Breathnach was then referred to a spine specialist back in Aichi Prefecture who did a biopsy and diagnosed a chordoma, a malignant bone tumor that is part of the sarcoma family, and which affects roughly 1 in 1 million people. It can occur anywhere along the spine, but usually appears at the tailbone or under the skull.

“This was February of 2020,” Breathnach says. “Despite never having operated on a chordoma before, the Aichi doctor scheduled me for surgery in May with radiation after.”

Second opinions

The situation had dragged on for years and with surgery in the near future, the couple had both begun to get increasingly nervous.

“I began counting down the days, anxious to have the surgery as soon as possible,” Breathnach recalls. “My wife kept upbeat and positive, but I could tell she was worried as well.”

She was indeed. As Breathnach resigned himself to the doctor’s orders, she continued to spend hours online doing her own research about the after-effects of the surgery. She uncovered horror stories about chordoma patients being operated on by inexperienced surgeons, which heightened her anxiety.

Eventually, however, she came across QST Hospital in Chiba where Dr. Reiko Imai had succeeded in treating chordoma without surgery. Breathnach’s surgeon wrote a referral letter and, in April, Breathnach set off for Chiba.

“My field is carbon ion radiotherapy for axial sarcoma, including chordoma in the spine,” Imai tells The Japan Times. “The institute has treated about 200 sarcal chordoma patients.” According to the doctor, the hospital has a 77% success rate in controlling a tumor over five years with carbon ion radiotherapy.

“Chordoma is an uncommon disease,” Imai continues. “Seeing an expert is important. If you live in Japan, the regional cancer center and academic hospital will have sarcoma experts in their orthopedic departments.

“Symptoms include lower back pain, urinary dysfunction, severe constipation and pain and numbness in the back of the leg if the tumor is in the sacral bones. If the chordoma is close to the brain, double vision may result. It is not immediately lethal but can metastasize and spread.”

The doctor adds that treatment includes surgery most of the time. “However, if the tumor is close to the brain, the spinal cord and important nerves, high dose radiotherapy is offered.” She is also quick to stress that every patient’s case is different.

Imai recommended radiotherapy for Breathnach but referred him to Dr. Yoshihiro Nishida, an orthopedic oncologist at Nagoya University Hospital, for a second opinion.

“He outlined the pros and cons of carbon ion radiotherapy and surgery, but he wasn’t going to direct me either way, it was my choice,” Breathnach says. “But it was startling to hear him say that, if I had surgery — even if it was carried out properly — I would not be able to walk normally afterward, could have difficulty even with assistive devices and, occasionally, have to use a wheelchair. (The earlier) spine specialist in Aichi had told me I would have no problem walking.”

Nishida also added that people come to Japan from overseas to be treated at QST Hospital. “Even though he didn’t explicitly state it, he left me in no doubt which route I should take,” Breathnach says.

Raising awareness

If you find yourself on the receiving end of a rare form of health problem in Japan, you still may be in luck. The country is at the forefront of medical research and, in fact, leads the world in the treatment of some cancers, heart conditions and successful transplants. Most treatments are covered by the national health insurance system.

The biggest concern for foreign residents and non-Japanese in receiving treatment might just be the language barrier. In Breathnach’s case, Imai speaks English and he had his Japanese wife to help him.

So, at the end of April, he followed Nishida’s advice and put himself in Imai’s care.

“I had 16 sessions of painless treatment with each one taking between five to 15 minutes. And I checked out a month later,” he says. The treatment itself involved Breathnach lying in various positions while a radiation beam was administered. “I was told not to move, but I didn’t feel anything,” he says.

“Everyone at QST was fantastic, and the treatment was covered by Japan’s national health insurance,” he adds. As of October, the tumor hadn’t grown and Imai was happy with Breathnach’s progress. Breathnach, too, is positive but remains realistic.

“Even if the treatment works, the tumor has a high recurrence rate and is something that I will have to live with for the rest of my life,” he says, adding that there isn’t enough pain to require painkillers but that he has retired from playing contact sports because of the discomfort.

Breathnach wanted to share his story with The Japan Times to help bring awareness of chordomas to its readers, but he also hopes to reassure those living here that there are options for treatment.

“There may be other foreign individuals living in Japan who have a similar issue but can’t put in the leg work that my wife and I could,” he says, adding that there isn’t much information online in English about treatment options in Japan. “I am also concerned that people may settle for an initial diagnosis. If I had listened to my first doctor’s advice and not demanded a CT scan, I’d still just think I had back pain. If I had listened to the Tarlov cyst diagnosis, we would still be monitoring the situation. If I had listened to the surgeon, I may not be walking today.

“Although,” he adds with a laugh, “it turns out the pain in my groin was unrelated. That cleared up by itself and was probably football-related, so the first doctor was right about that, I guess!”

“If you are diagnosed with chordoma, you are not alone,” Imai says. “You can visit the Chordoma Foundation website, we are fighting chordoma together.”

At QST Hospital, carbon ion radiotherapy is also used to treat other kinds of tumors, as well as many types of cancer.

“I don’t know how many people with my rare disease this story will help,” Breathnach says, “but it might spur people into getting themselves checked out and getting second opinions about treatment.”

In the interest of helping other people diagnosed with chordoma, Niall Breathnach can be contacted at fightingchordomajapan@gmail.com to answer any questions.