Japan cancer patients' online quest for answers

A man sits alone in his room late at night as he apprehensively scours the web. “Are there any other patients who have lung cancer caused by the same gene?” he said to himself while searching online.

He comes across the blogs of other cancer patients and the websites of patient groups, but cannot find the information he seeks. The man, 59, from Fukuoka Prefecture, quits his online search. 

He was diagnosed with lung cancer in January 2014, prompting him to participate in a genetic analysis as part of a research project at a local university hospital. After learning that a mutation in the ROS1 gene caused his cancer, he enrolled in a clinical trial for drugs. His type of cancer is seen in only 1 per cent of lung cancer cases.

Cancer gemomics examines genetic information to ascertain the gene mutations that caused the cancer. 
This information is used to find a suitable medicine for the treatment. Advances in cancer gemomics have led to a shift from treatment based on the affected organ to treatment based on the type of genetic mutation.

For example, two patients who both have lung cancer will use different medicines if the mutation is different. The information patients require will also differ. The man could not share necessary information even when he tried to exchange information with other lung cancer patients at the hospital.

“I just want more information about cancer so I can help myself,” he said.

One year had passed and the man was about to give up on his online quest for answers. Then, however, he stumbled across an international group for ROS1 patients called “ROS1ders” on Facebook.

How long will the medicine I’m taking stay effective? How bad will the side effects be? What if the cancer spreads? — He found posts on all his questions.

“There aren’t many ROS1 patients, but I was able to find more than 100 people talking about their experiences. It was like my future was expanding through them. There was information about new medicines that I’d never heard of in Japan, and I started to hold out hope for a longer life,” he said.

Cancer genomics is also changing the way cancer patients interact with each other. In the past, most cancer patient groups were categorized by the affected organ, a sensible approach if treatment is also based on the organ infected. However, therapy increasingly corresponds to the type of gene mutation rather than where the cancer is located, so patients are more inclined to exchange information based on the type of gene mutation, as was the case for the man from Fukuoka Prefecture.

“I never realized cancer wasn’t just one disease until I got it myself,” he said.

Terumi Sasamoto, 63, from Saitama, reflected on her experience. She is part of a group of lung cancer patients called One Step, which holds group discussions every few months. Her particular cancer was caused by a rare gene mutation called ALK. Participants split into groups with others affected by the same mutation, like ALK or EGFR, where they chat and exchange information.
 Patients are most interested in discussing therapeutic medicines, as it is challenging to search for information on clinical trials for new medicines alone.

Kazuo Hasegawa, 46, is a representative for One Step who also has lung cancer. He spoke about the stark realities cancer patients must face.

“Clinical trials are already a treatment option for cancer patients. It is vital for patients to exchange information about what trials are being held at which hospitals. Whether you can participate in a clinical trial can be a matter of life and death.”

The man from Fukuoka Prefecture became the ROS1ders’ first Japanese member. In May this year, he revealed on his personal blog that he had lung cancer caused by the ROS1 mutation. He no longer blogs exclusively about hobbies like travel and cuisine but also about progress in his treatment. He updates his blog in the hope of helping patients who are seeking information like he once did.