Support Groups for Mesothelioma
Are there any support groups that are for mesothelioma and not lung cancer?
Christina Bach, MSW, LCSW, OSW-C, Oncology Social Worker at Penn Medicine, responds:
Honestly, support groups specifically for mesothelioma are few and far between, and they are often lumped together with lung cancer groups. A good place to start is by contacting the American Cancer Society (1-800-ACS-2345), as they maintain a national database of support groups and supportive services available to patients. The Mesothelioma Applied Research Foundation (MARF) has a few helpful options. One is a discussion forum where you can post questions or concerns and get input from other patients/families. They also offer telephone support groups – with separate groups for caregivers, patients, spouses and adults who have lost a parent. You need to contact the Nurse Practitioner at MARF to join those.
The Association of Cancer Online Resources is a website that hosts email groups, and they have a group for mesothelioma. You need to subscribe to join the list, which will send you emails from the group. These groups generally are made up of patients and caregivers and are not moderated by a healthcare professional. That does not mean they are not helpful – you can often learn a lot from people who have been in your shoes!
It is always helpful to talk to the staff at the center where you are being treated, as they may be able to link you with other local resources or even patients/caregivers whom you can connect with who may have been through similar treatments or issues in coping with the disease.
This question and answer was part of the OncoLink Brown Bag Chat Series. View the transcript from the Focus on Mesothelioma webchat.