What Are Mesothelioma Support Groups?
Mesothelioma support groups help patients — as well as their friends, family, and caregivers — cope with all aspects of a cancer diagnosis by providing a safe place to share experiences and learn from others who are facing the same worries and challenges.
“The truth is that the only people who genuinely understand what you are going through are people who have experienced it themselves,” explains Alexis Kidd, a 16+ year peritoneal mesothelioma survivor. “The mesothelioma support community has afforded me an incredible opportunity to meet others who have either been diagnosed with this same type of cancer or who have a family member battling this illness. It is such a gift to be even a small part of their corner of the world.”
Learn more about what’s helped Alexis and other individuals find support after a mesothelioma diagnosis in our Free Mesothelioma Survivors Guide.
Benefits of Joining a Support Group
Mesothelioma support groups can provide patients and their loved ones with:
- Emotional support: Group support can provide a safe and confidential space for people to share their feelings and experiences with mesothelioma.
- Helpful coping skills: By hearing about other people’s journeys, you can gain a fresh perspective on how to cope with mesothelioma.
- Practical information: Support group meetings often feature professional speakers or facilitators who can provide information on treatments, mental health services, and other useful resources that can help you physically and emotionally.
- Social connection: Joining a support group can help you feel less isolated and more connected to others who are going through similar experiences with mesothelioma.
According to a 2021 study published in Open BMJ journal, there is “considerable evidence” that cancer support groups help enhance coping skills, reduce feelings of isolation, depression, and anxiety, and lead to better-informed patients.
We can help you find a mesothelioma support group. Reach out to our Patient Advocates at (866) 608-8933 now to get started.
Top Mesothelioma Support Groups for Patients
Support groups provide a dedicated space where you can share as much — or as little — as you want. Simply listening to the experiences of other patients and mesothelioma survivors can be incredibly helpful, especially during your first few group meetings.
There are a wide range of support options for mesothelioma, with patients meeting in person, over the phone, and online.
Local Support Groups
If you’re comfortable meeting in person, a local support group is an excellent way to meet others who have walked in your shoes.
You can find local groups for patients through:
- Hospitals: Most hospitals offer on-site cancer support for their patients. You can ask a member of your care team what groups are available and when they meet. Additionally, a hospital social worker may be able to direct you to other support communities in your area.
- Mesothelioma Cancer Centers: Cancer centers with mesothelioma units often host support groups for patients battling this disease. For example, Brigham and Women’s Hospital in Boston holds “Living with Mesothelioma” meetings throughout the year.
- The Cancer Support Community: This nonprofit network has 175 locations where patients can access professionally led support groups. You can search by city, state, or ZIP code to find a group near you.
- The National Cancer Information Center (NCIC): You can call the NCIC 24/7 at 800-227-2345 to get help locating a support group in your area.
Since this cancer is so uncommon, there may not be a support group near you dedicated solely to mesothelioma. If you cannot find an in-person mesothelioma support group close to you, consider contacting a helpline or attending an online meeting.
Telephone Support Groups
Phone-based support groups are especially helpful to busy people going through treatments or late-stage patients who cannot leave their homes for extended periods.
You can find mesothelioma phone support groups through:
- CanCare: This group helps connect patients with cancer survivors who support them through phone calls and text messages as they fight their disease.
- CancerCare: This national organization holds support groups online using a password-protected message board. Each group runs for 15 weeks at a time and is led by a professional oncology social worker.
- Cancer Support Helpline: This helpline connects patients with resources and communities to meet their needs.
- Mesothelioma Applied Research Foundation: The Meso Foundation hosts patient calls on the second Monday of every month at 7 p.m. (ET). A mesothelioma survivor hosts each call.
Get your copy of our Free Mesothelioma Survivors Guide to read more about support resources that have helped patients diagnosed with mesothelioma.
Mesothelioma Support Groups Online
An online support group might be a better fit if you need more flexibility.
Examples of online mesothelioma support groups include:
- Cancer Survivors Network: Founded by the American Cancer Society (ACS), this peer-based platform lets you join discussion boards and get advice from the wider cancer support community.
- Mesothelioma Straight Talk – General Discussion: This is a private Facebook group sponsored by the Meso Foundation where patients and loved ones can share their stories.
- Mesothelioma Straight Talk – Patient Support: The Meso Foundation created this group for patient-specific support on topics like living with mesothelioma, managing treatment side effects, and more.
- MyLifeLine: This platform allows patients to share insights, coping strategies, and inspiration. Licensed mental health professionals moderate discussion boards and cover topics ranging from nutrition to immunotherapy.
These online forums are a great way to connect with other patients around the country and read inspiring stories of survival as you fight mesothelioma.
Our Patient Advocates can recommend support groups tailored to your needs. Connect with them at (866) 608-8933 today.
Family and Caregiver Mesothelioma Support Groups
A mesothelioma diagnosis can affect the entire family. Watching a loved one fight cancer is extremely difficult, and many people struggle to cope with their feelings of anxiety and grief.
By attending a caregiver, spouse, or family support group, you can learn how to manage a loved one’s mesothelioma diagnosis and bond with others in the same situation. These shared connections can help improve your mental health and overall well-being.
The Meso Foundation manages the following online mesothelioma support groups for caregivers and families:
- Mesothelioma Straight Talk – Caregivers – Advanced Disease: This group gives those caring for a late-stage mesothelioma patient a place to learn about symptom management and other care options.
- Mesothelioma Straight Talk: Caregivers – Early Disease: This group focuses on early-stage mesothelioma caregivers looking for inspiration, encouragement, and support.
- Mesothelioma Loss Support Group: It can be painful to process the death of a loved one alone. This forum allows those who have lost someone to mesothelioma to build a support network and learn helpful coping skills.
The Meso Foundation also hosts a Caregiver Support Group, a Young Widows and Widowers Support Group, and a Spousal Loss Conversation Group, all of which are accessible via Zoom and telephone.
Learn how other caregivers and family members have coped with their loved one’s mesothelioma diagnosis in our Free Mesothelioma Survivors Guide.
Other Types of Mesothelioma Support Resources
Along with mesothelioma groups, patients and their loved ones can benefit from additional forms of support.
Other support options include:
- Emotional support: Patients, caregivers, and their family can access mesothelioma supportive therapy from a licensed counselor to manage anxiety and depression.
- Faith-based support: This type of support typically includes prayer, counseling, meditation, and spiritual guidance.
- Financial assistance: Many families affected by mesothelioma struggle to cover medical expenses, travel costs, and lost wages. Eligible patients and their family may be able to access mesothelioma financial support through nonprofit organizations, the U.S. Department of Veterans Affairs (VA), and asbestos-related legal compensation.
- Medical treatments: Depending on the stage of their mesothelioma, patients can receive a variety of treatments, including surgery, radiation, chemotherapy, and immunotherapy.
Get connected with a top mesothelioma specialist in your area by using our Free Doctor Match.
Community Support Organizations and Mesothelioma Awareness Events
Community support helps spread awareness of this rare disease and educate the public on the dangers of asbestos, which is the only known cause of mesothelioma.
Fundraisers, races, and other awareness events hosted by community support organizations unite people affected by mesothelioma and asbestos-related diseases to share personal experiences, learn about new treatments, and advocate for research to find a cure.
Learn more about these awareness events below.
Asbestos Awareness Week
In 2013, the U.S. Senate designated the first week in April as National Asbestos Awareness Week. This is a great time to advocate for Americans exposed to asbestos on the job or during their military service.
The Asbestos Disease Awareness Organization (ADAO) also celebrates Global Asbestos Awareness Week between April 1 and 7 of each year.
International Symposium on Malignant Pleural Mesothelioma
The International Symposium on Malignant Pleural Mesothelioma is a two-day conference started by the Meso Foundation.
The event highlights mesothelioma clinical trials and emerging treatments and allows patients, loved ones, caregivers, and family members to connect with top mesothelioma experts.
If you are unable to attend in person, you can watch the full conference on demand for free.
Mesothelioma Awareness Day
Mesothelioma Awareness Day has been observed annually on September 26 since 2004. The Meso Foundation uses this day to heighten public awareness of mesothelioma using social media and promotes third-party fundraising events across the country that go toward research and treatment.
Miles for Meso
The Miles for Meso 5K and 3K Fun Run/Walk allows people of all ages to advocate for patients with mesothelioma and raise funds for awareness and research. This annual event is sponsored by Simmons Hanly Conroy, a top mesothelioma law firm and the official legal partner of Mesothelioma Hope.
Virtual Day of Asbestos Awareness and #BanAsbestos Action
The ADAO hosted this first-ever event on March 23, 2023, with all-day virtual communications between ADAO leadership, asbestos warriors, medical experts, experienced attorneys, and international public health advocates,
The purpose of the event is to:
- Compel Congress to reintroduce the Alan Reinstein Ban Asbestos Now (ARBAN) Act
- Dispel misconceptions about asbestos usage in commercial products
- Educate the public about the dangers of asbestos exposure
- Generate support for legislation to ban asbestos in the United States
World Lung Cancer Day
August 1 was named World Lung Cancer Day by the American Lung Association (ALA) to advocate for lung cancer research with local events and nationwide social media takeovers.
While mesothelioma is not a cancer of the lung, it often affects the lung lining, and many people need to have a lung removed as part of their treatment. Asbestos exposure can also cause lung cancer in some cases.
Get Support and Assistance for Mesothelioma Today
A mesothelioma diagnosis can profoundly affect you and your loved ones. You and your family may feel anger, confusion, sadness, and isolation as you navigate life with mesothelioma.
You are not alone on this journey. Thousands of other people are in the same situation and can relate to exactly what you’re feeling at this very moment.
Mesothelioma support groups are a great place to find helpful information, empathy, and a shared understanding of your situation.
Our Free Mesothelioma Survivors Guide is another resource for those looking for firsthand advice on battling this cancer – get your copy today.
Mesothelioma Support Groups FAQs
Can you live a normal life with mesothelioma?
Living with mesothelioma can be challenging, but there are reasons to be hopeful. Your prognosis and quality of life depend on factors like the cancer’s stage, treatment effectiveness, your overall health, and support systems.
Early detection and advanced treatments offer promising outcomes, allowing many patients to enjoy a good quality of life despite their diagnosis. Building a strong support network, maintaining a healthy lifestyle, and working closely with medical professionals can go a long way to enhance your well-being.
How does mesothelioma affect your mental health?
If you or a loved one has been diagnosed with mesothelioma, you may have feelings of anxiety and depression about the uncertain journey ahead. However, it’s important to be mentally strong as well as physically strong going into your mesothelioma treatment.
Patients and caregivers are encouraged to find mesothelioma support groups and lean on their friends and family following a diagnosis and during treatment.
Talk to your doctor about what steps you can take if you begin experiencing symptoms of anxiety or depression after a mesothelioma diagnosis.
How can I find mesothelioma support groups online?
Online communities have become more popular than ever in response to the COVID-19 pandemic. Trusted organizations such as the Meso Foundation and the ACS offer numerous online support services.
Even though you may not be able to meet with other mesothelioma patients in person, you can still make meaningful connections online. Contact our team today for help finding support groups online.
Are there mesothelioma support groups for family members?
Yes. The Meso Foundation provides support for caregivers and loved ones through Facebook groups and regularly scheduled Zoom meetings.
You can also reach out to your local hospital or cancer center to see if they run support groups for families affected by mesothelioma.
How can I help someone with mesothelioma?
There are many ways to help loved ones with mesothelioma. For example, you can bring them meals, run their errands, drive them to doctor’s appointments, accompany them to support group meetings, or help care for other family members in the home.
The best place to start is checking in with them and asking how you can help. Everyone handles a mesothelioma diagnosis in their own way and will have unique needs depending on their situation.
