Rare Cancer & the Loneliness Epidemic: How Support Groups Help
Health & Wellness
Written by Dana Nolan | Edited by Amy Edel
The U.S. Surgeon General declared loneliness a public health epidemic in 2023, and for many patients, mesothelioma can feel like a lonely disease. But building a supportive community with others living with the same diagnosis is possible. Patients and caregivers have shared with me in my practice that talking to others with mesothelioma has been very helpful for them.
Research in psycho-oncology, the study of emotional and social aspects of cancer, indicates cancer patients who receive social and emotional support have a better quality of life. A 2025 systematic review published in BMJ Oncology found that loneliness among cancer patients was associated with a 34% heightened risk of death from any cause.
This is especially true for rare cancer patients. A 2024 systematic review published in the Orphanet Journal of Rare Diseases found that rare cancer patients experience worse psychosocial outcomes than those with more common cancers, including higher rates of anxiety, depression and PTSD.
Support comes in many forms: mental health professionals, family, friends and peers who are also dealing with mesothelioma. Peer support is unique because it allows mesothelioma patients to talk to others going through the same diagnosis. Talking to others with mesothelioma is helpful because there is an existing understanding of many aspects of mesothelioma treatment that family and friends may not have. With peer support it’s not necessary to explain about scans, procedures etc. Luckily there are several options to meet and connect with peers who also have mesothelioma.
How a Rare Diagnosis Like Mesothelioma Can Exacerbate Cancer-Related Loneliness
There are unique challenges and complications in dealing with rare diseases like mesothelioma. Many of those challenges can affect mesothelioma patients’ physical, mental and emotional wellbeing. It’s common that mesothelioma patients find there is a lack of knowledge about rare diseases like mesothelioma both in their community and even among their general healthcare providers.
Rare diseases are commonly misdiagnosed or there are delays in diagnosis which can cause emotional distress as well as limit available treatment options. The Orphanet systematic review noted among the more challenging illness trajectory rare cancer patients face are delays in diagnosis and receiving incorrect treatment.
The review also noted people with rare cancers can have more limited access to clinical trials. Many mesothelioma patients have expressed frustration to me that research funding is not as high as other more common types of cancer such as breast, lung or prostate cancers. Finding mesothelioma specialists may require frequent or extensive travelling to consult and get treatment.
These stresses of a rare diagnosis impact the emotional distress and loneliness that many mesothelioma patients may feel. And mesothelioma is a very rare type of cancer. The National Organization of Rare Disorders defines a rare disorder as a disease or condition that affects fewer than 200,000 Americans. There are more than 10,000 types of rare disorders. And mesothelioma is a very rare type of cancer, with approximately 3,000 new cases diagnosed in the U.S. each year.
This underscores the importance of finding peer support among mesothelioma survivors. It’s also important for caregivers and family members, helping a loved one manage this uniquely challenging cancer.
How Patient Feedback Built Our Mesothelioma Online Support Community
The Patient Advocates at the Mesothelioma Center in their daily conversations with mesothelioma patients often heard they were having trouble finding anyone in their community or at their cancer treatment center also living with mesothelioma. Patients and caregivers really wanted to talk to others experiencing the same diagnosis and treatment challenges. In response to this feedback, the team started an online support group in 2013, which has now been providing a safe space for mesothelioma patients and their caregivers to connect with one another for 13 years.
Our monthly online support group is only open to current mesothelioma patients and their caregivers. Participants can join online or through a phone call. Our group members routinely talk about how much they get from the group and being able to hear other people’s stories and experiences with mesothelioma.
The Mesothelioma Center also moderates a Facebook group only accessible to people with mesothelioma, their family members and friends. One benefit of a Facebook group is that members can log in at any time of the day or night and read about other mesothelioma experiences as well as give and receive support from others outside of our monthly support group.
Another opportunity for connection is attending The International Symposium for Malignant Mesothelioma, which is an annual event, usually held in the autumn at various locations throughout the country. It’s a great forum to hear presentations from mesothelioma experts and to meet other patients and caregivers at the support groups and social events held at the symposium. Some cancer treatment centers also offer their own peer support programs where they match newly diagnosed patients with former patients who have the same diagnosis. If you’re getting treatment at a facility that has mesothelioma specialists, then it’s worth asking if they have a peer support program for mesothelioma.
