A new Japanese study has some sobering news for people hoping to survive malignant mesothelioma: Life after mesothelioma can still be challenging.
The study was conducted by multiple centers across Japan. A total of 133 mesothelioma patients who had been free of disease for at least five years completed questionnaires about their experiences and their quality of life.
Assessing the Lives of Mesothelioma Survivors
To get a picture of what life is like for mesothelioma survivors, the study group sent a 64-question survey to hospitals and patient advocacy groups. Patients completed the questionnaire themselves and then returned it to the researchers by mail.
The questions specifically about quality-of-life came from the European Organization for Research and Treatment of Cancer and the Comprehensive Quality of Life Outcome questionnaire.
Disease Free Does Not Mean Pain Free
One of the key findings to come out of the study is that many pleural mesothelioma survivors continue to experience pain, even after they have been declared cancer free.
The researchers say the quality-of-life assessment was “very unfavorable” for the measurement of “Being free from physical pain”. Many other respondents reported different chronic problems, as well.
“The QLQ assessments demonstrated that the survivors of malignant pleural mesothelioma most frequently complained of fatigue, pain, sleep disturbances, and dyspnea [shortness of breath],” says lead investigator Yasuko Nagamatsu with St. Luke’s International University in Tokyo.
Notably, although the self-reported levels of each patient’s post-mesothelioma symptoms were “acceptable” according to the researchers, the functional scales—how much patients were actually able to do in their daily lives—were significantly poorer.
Mesothelioma Survivors Need Support
Although the new study may appear to be more bad news for mesothelioma patients, the researchers’ own take on the results was more hopeful.
While some pleural mesothelioma survivors may have impaired function and a range of symptoms to deal with, the report concludes that their lives may be improved with the right kind of help.
“Survivors of malignant pleural mesothelioma, even those in good physical condition, need broad support,” writes Dr. Nagamatsu.
It should also be acknowledged that not all mesothelioma survivors face quality of life challenges. Paul Kraus, the world’s longest living documented mesothelioma survivor, continues to maintain a healthy and active life more than 20 years after fighting off peritoneal mesothelioma.
Nagamatsu, Y, “Quality of life of survivors of malignant pleural mesothelioma in Japan: a cross sectional study”, March 27, 2018, BMC Cancer