Finding a Mesothelioma Support Group

Finding a good support system can help overcome a lot of stresses, improve quality of life and has even been shown to increase survival in some cases.

Key Points

  • 1

    It's important to find a support group that's the right fit for your individual needs.

  • 2

    There are many different types of support groups available.

  • 3

    Local and national organizations, hospitals, & more may all have support group options.

  • 4

    Don't be afraid to try attending a few options before finding one that's a good fit.

Should I Join a Support Group?

Though cancer patients and their families can rely on one another for support, it can still be an incredibly lonely and stressful journey. Navigating a cancer diagnosis alone can create more worries and uncertainties. Oftentimes talking to others going through a similar situation can be a first step to better coping with the diagnosis and regaining a sense of hope.

Support groups provide an opportunity to not only discuss your feelings and what you’re going through, but also to help you cope with your treatment and possibly even help decide on a treatment option based on other patients’ feedback.

Potential Benefits of Joining a Support Group

  • 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
  • Learning invaluable tips on coping with cancer and how to stay strong mentally and physically
  • Strengthening your emotional well being and finding hope
  • Insight and tips for family on how to care for their loved ones throughout their journey

Though there are definitely a lot of positives that can come from joining a support group, for both patients and their loved ones, it may not be the right fit for everyone. Some people find the thought of discussing such intimate details rather uncomfortable. But before you reject the idea and assume it’s not a fit for you, you should ask yourself some questions and take some time to research your options.

In addition to learning about potential support groups to join, you should first consider what you want to get out of it. Do you mainly need emotional support? Or are you seeking more insight into treatment options and your diagnosis itself? You might also consider how you can benefit the group. While you’re not expected to have all the answers other patients or caregivers seek, you should make sure you’re comfortable hearing their struggles and pain, and can help provide support to them as well.

Questions to Ask When Considering a Support Group

  • How big is the support group? How many people am I comfortable meeting with?
  • Who leads the group (other cancer patients, a survivor, caregiver, professional counselor)?
  • Who attends the meetings (mostly patients, survivors, family members)?
  • What’s the purpose of the group? Is it mainly focused on emotional support 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?

Support Group Options

Support groups can vary greatly, and with the variety of options available many patients can find a group that fits their needs. It’s important to note, even if you test out one support group and find it’s not suited to what you’re looking for it doesn’t mean support groups aren’t for you. It may take time to find the format and community that’s the most beneficial for you.

When many of us envision a support group, we imagine an in-person session with members seated in a circle. Though many patients or family members still choose to find a support group they can meet with in person, patients are increasingly turning to online groups and forums or groups that connect over a conference call.

Online Support Groups

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, 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, 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. Regardless, any medical advice you receive in the chat should always be discussed with your doctor, since they will understand your individual case.

Telephone Support Groups

Many telephone 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 the 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 options may also have a fee involved.

Private Support

Other patients and family members might also prefer seeking more private care. Finding a certified counselor, therapist, or an oncology social worker at your cancer center could be a more comfortable and beneficial fit for those who don’t want to share their personal journey with a group of people.

You can meet individually or in family settings depending on your comfort level and needs. This might also be a better fit for patients or loved ones trying to tackle more severe mental health issues and in need of more personal care.

Finding a Support Group

You should certainly reach out to your doctor or your social worker for help in finding a support group. The majority of hospitals and medical centers have their own support groups for patients that you can consider joining. If they don’t have their own support groups available, they will most likely have a list of options locally or nationally that could be a good fit for you.

Local organizations, like libraries and churches, may also offer support groups or help provide options in your area.

Resources

In addition to reaching out to your medical team or social worker, here are a few good starting places to find the support you need:

American Cancer Society

800-227-2345

Association of Cancer Online Resources (ACOR)

212-226-5525

Cancer Hope Network

(908) 879-6518

Cancer Support Community

1-888-793-9355

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Medically Reviewed By A/Prof. Tom John A/Prof. Tom John

Dr. Tom John is a medical oncologist, associate professor, and senior clinical research fellow at the Olivia Newton-John Cancer Research Institute in Melbourne, Australia.