” Families of young thyroid cancer patients from Fukushima Prefecture diagnosed after the 3/11 disaster have formed a support group that also aims to pressure doctors and authorities for better policies.
The 311 Thyroid Cancer Family Group hopes to share the concerns people have felt over the health of their loved ones in the five years since the onset of the nuclear crisis.
“We want the Fukushima prefectural government and doctors to demonstrate a better understanding of patients,” one member said.
The group was established by seven parents and relatives of five young people from the prefecture’s central Nakadori and eastern Hamadori areas who underwent thyroid surgery following the triple meltdown at the Fukushima No. 1 nuclear power plant.
Hiroyuki Kawai, a lawyer from the Daini Tokyo Bar Association, will lead the group as its representative. Others will help manage the association, including Motomi Ushiyama, a doctor who has served as a physician in Fukushima Prefecture and also conducted an investigation on residents of areas contaminated in the 1986 Chernobyl disaster.
“Our aim is to create a place where patients, who remain separated and are unable to even talk of their anxieties or doubts, can meet and talk to one another,” Kawai said. “By having the patients and their families unite and cry out as one, it makes it easier for us to make policy suggestions to the government.”
The group is considering filing lawsuits in the future against the central and prefectural governments, along with Tokyo Electric Power Co., the Fukushima plant’s operator, but at the moment, its main purpose is to provide direct help to the patients and their families.
The Fukushima prefectural government continues to examine the thyroid glands of residents who were 18 or under at the time of the 2011 nuclear disaster and those born following the event, which accounted for around 380,000 people. A total of 166 cases of thyroid cancer or suspected signs of the condition were found before the end of 2015.
However, the prefecture’s expert panel assessing the statistics deemed it was “unlikely the cases were caused by radiation.”
Unsurprisingly, members of the group viewed this official statement with unease and skepticism.
One high school student from Nakadori had her thyroid gland removed by a doctor at Fukushima Medical University Hospital last spring. But with the cancer cells having spread more than expected, she now has a large scar across her neck that she feels she must cover with a scarf even in summer.
Her mother, in her 40s, said: “My daughter became more prone to fatigue after the surgery. Falling asleep while playing her video games, which she loves to do, was something that never happened before.”
A nodule was found on the student’s thyroid about two years ago. At the hospital, her surgeon told her: “We will examine the tissue believed to be formed of cancer cells by sticking a needle in your neck. It’s very painful, so it’s up to you to decide. Make up your mind within a month.”
The student and mother talked it over and decided to opt for the test. But when they returned to the hospital to get the results, the mother was shocked, as the doctor just blurted out the results in front of the young patient, saying: “It was a malignant tumor.”
The doctor did, however, explain it was nothing to worry about and said: “It’s not a big deal. Thyroid cancers can be left as they are for six months or a year, and they still won’t be anything life-threatening.”
But when the student underwent surgery six months later, her mother was reprimanded by the same doctor who said: “The tumor was bigger than we had expected. Who in the world told you that you can leave it for six months?”
The doctor also warned her of the possibilities of recurrence.
After her daughter’s surgery, the mother joined an event organized by the hospital for thyroid cancer patients to meet one another. But it was nothing like what she had envisioned.
“We only heard one-sided stories, and it was not a forum that would answer any of the doubts I had,” she said. “It was completely useless.”
The father of a man who was a high school student in 2011 was disturbed by the attitude of the same doctor who also operated on his son’s thyroid.
The father said: “After the surgery, I repeatedly asked the doctor if the cancer had anything to do with the nuclear power plant, but he just flat-out rejected it saying, ‘There’s no correlation.’
Furthermore, the doctor told him: “Don’t say anything to the media even if they learn about your son’s surgery. You know there’s no necessity for you to answer them.”
“My son fears recurrence and metastasis every day,” the father said.
However, the doctor told The Asahi Shimbun through the institution’s public relations department that he had been misunderstood.
“We have been paying the utmost attention to establishing an environment where patients can talk about their worries and doubts, having mental health care specialists getting involved with them at an early stage of their treatments. Such efforts continue well into the post-surgery period,” he said in writing.
“The diagnosis of cancer is something we take extreme care when we are letting the patients know about it. But now having been confronted by interpretations that were not at all my intentions, I strongly realize the difficulty of conveying the message to patients. When we give the notice to patients who are minors, we consult their guardians and check with them before giving them the word.”
Meanwhile, the 311 Thyroid Cancer Family Group will be holding events to promote networking between patients’ families and where they can seek advice, encouraging more people to join the group.
The members said: “We first want to encourage the patients to meet each other, share information and demand improvement of their medical environments.” ”
By Masakazu Honda