Finding a Mesothelioma Support Group

You don’t have to face a mesothelioma diagnosis alone, whether a patient, loved one or caregiver. There are many options for support groups, which offer an array of benefits.

Key Points

  • 1

    Support groups can be specific to patients, family members or caregivers.

  • 2

    In-person meetings, online forums or conference calls are common options.

  • 3

    It can take time to find the right support group for your preferences and needs.

  • 4

    These groups offer emotional, medical and practical support.

When facing a mesothelioma diagnosis, whether you’re a patient, a family member or close friend, a caregiver or a survivor, it can feel incredibly lonely and as if no one else understands what you are going through. Though patients and their loved ones can turn to each other, sometimes it’s even more beneficial to hear from others in the community going through similar things, like difficulties with treatment or dealing with the mental side effects of a diagnosis. Finding a mesothelioma support group that fits your needs can make a difference in your overall wellbeing.

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Benefits of Joining a Support Group

People may seek support for different reasons, and finding a support group can offer a wide array of benefits for anyone’s situation. Interacting in these settings can provide emotional support, medical support and practical support, which can extend into an improved quality of life.

Potential Benefits
  • Finding a community facing the same or a similar diagnosis
  • A sense of camaraderie and empowerment
  • Interaction with different groups of people, including cancer patients, survivors, caregivers and practitioners
  • Hearing personal perspectives from those facing the same cancer or treatment
  • Discovering more mesothelioma research, like new clinical trials and mesothelioma treatment options from other patients
  • Learning invaluable tips on coping with cancer and how to stay strong mentally and physically
  • Strengthening your emotional wellbeing and finding hope
  • Insight and tips for family on how to care for their loved ones throughout their journey

Where to Find a Mesothelioma Support Group

When seeking out a support group, you should consider the type of support you need and the type of topics typically discussed in the prospective groups. For instance, some groups may focus more on the cancer itself, which may not be as beneficial to a caregiver or loved one as it would for a mesothelioma patient. Instead, caregivers may want to seek out a group that consists of other caregivers, who can offer tips and similar experiences, while loved ones will want a community that can also speak to changing roles when dealing with cancer, practical financial advice or every day changes like transport to and from treatments.

As you consider the type of support you might want and begin the process of researching potential support groups, there are several options available for finding the right support group for you.

Cancer Clinics and Local Organizations

When hearing “support group,” most people think of the traditional in-person meetings, where a group gathers around a facilitator and can take turns talking about their experiences. For some, the thought of a support group like this may cause some discomfort at the thought of sharing personal information out loud to strangers. But many still find comfort in making such connections and having face-to-face conversations.

Questions to Consider When Researching In-Person Support Groups
  • How big is the support group? How many people am I comfortable meeting with?
  • Who leads the group (other cancer patients, a survivor, caregiver, medical professionals)?
  • Who attends the meetings (mostly patients, survivors, family members)?
  • What’s the purpose of the group? Is it mainly focused on emotional support and mental health or providing education and information on the diagnosis and treatment?
  • Where does the group meet and how often? How long does a typical session last?
  • What’s the format? If I attend, can I just sit and listen?

As you look into potential in-person meetings, there are a few avenues to take. Ask your mesothelioma specialist, social worker or other health professionals at your cancer center about their support services. Local organizations like churches and libraries also often hold various types of support groups. Nonprofits may be another option for patient support.

Mesothelioma Support Groups Online

Online support groups can take several forms. It can be a listserv that chats over email, an online forum where you can post questions and chat with other members, a chat room, a Facebook group or a moderated discussion group. Many patients enjoy this structure because they can find the support they need at any time of day or night, and it doesn’t require any specific time commitment. It also allows them to connect to other patients, patient advocates, caregivers or survivors all over the world.

When considering an online support group, it’s important to do your research. Consider who, if anyone, is leading or moderating the forum. Online support groups run through a cancer organization or cancer center will likely be more trustworthy and educational than a smaller group, also providing the latest news and resources in the community. Regardless, patients should only rely on professional medical advice from their doctor, as they understand your individual case.

Conference Calls

Many phone-based support groups are run by national cancer organizations and some cancer centers. These can be a good option for patients who may not be able to find a good local option or are unable to travel for planned support group sessions. Similar to online support groups, this option can allow patients to connect with others experiencing similar situations all around the country.

Like with any support group, be mindful of who is running these conversations to make sure you’re receiving accurate, helpful information. Keep in mind, some of these phone number options may also have a fee involved.

Additional Resources to Find a Support Group
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Written By Tonya Nelson Tonya Nelson

Tonya Nelson is an experienced writer and editor, who has published on a wide variety of topics, particularly in the health field. Her bachelor’s degree in magazine journalism from the S.I. Newhouse School of Public Communications at Syracuse University sparked her curiosity for writing stories about environmental and medical issues. As the Managing Editor, Tonya oversees the content development process, ensuring every article and informational page published adheres to MAA Center’s editorial guidelines.