Mesothelioma Support Organizations
Various mesothelioma support organizations and resources are available to help patients, caregivers and loved ones throughout their cancer journey. These mesothelioma support organizations provide free resources, including support groups and online discussion boards.
It is important to connect with other people and organizations that understand what mesothelioma patients and their families are going through. They can provide resources and support that are tailored to your needs.
The Mesothelioma Center at Asbestos.com
The Mesothelioma Center at Asbestos.com offers support groups, webinars featuring survivors and experts, Patient Advocates and free services for patients and families.
Our Patient Advocates help patients find doctors, schedule appointments and access funds for treatment. They connect patients and families to a variety of other resources that help them cope with the disease.
They can also help you find clinical trials, file for VA benefits and access Social Security Disability and other support services, all of which are offered for free.
Mesothelioma Applied Research Foundation (Meso Foundation)
The Meso Foundation is a nonprofit organization that hosts support groups for mesothelioma patients, caregivers and their loved ones. Doctors, advocates, researchers and survivors collaborate through this organization to support the mesothelioma community.
International Mesothelioma Interest Group (iMig)
The International Mesothelioma Interest Group is a research group that formed in 1991. It organizes an international conference on mesothelioma research that takes place every two years.
The conference highlights global mesothelioma research and provides doctors with the opportunity to learn from others in the field to promote new advances in treatment and early diagnosis.
American Cancer Society (ACS)
The American Cancer Society offers free lodging for eligible patients and their families via its Hope Lodge program, which includes 30 Hope Lodge locations in the U.S. For those traveling where there are no lodge locations, ACS offers assistance via grants and a partnership with Extended Stay America. Rides to treatment are available through its Road to Recovery program, volunteer drivers and grants.
Support and networking opportunities are also available through ACS’s Cancer Survivors Network and Reach to Recovery app and website for breast cancer patients. Affordable wigs, hats, scarves and mastectomy products are also available through its Tender Loving Care program.
Pacific Mesothelioma Center
The Pacific Mesothelioma Center is a nonprofit known for its groundbreaking research into mesothelioma treatments. It was founded in 2012 as a division of The Pacific Heart, Lung & Blood Institute.
The center sponsors the annual Walk for Mesothelioma fundraiser, which raised $580,000 in 2020.
Canadian Mesothelioma Foundation
The Canadian Mesothelioma Foundation is a mostly volunteer-run charity dedicated to raising awareness of mesothelioma in Canada. Founded in 2008, the foundation unites patients, families and doctors specializing in mesothelioma to promote better treatment and a search for a cure.
The foundation is also engaged in patient advocacy and lobbying for better policies to help mesothelioma patients and prevent future asbestos exposure.
National Cancer Information Center (NCIC)
The National Cancer Information Center has a cancer help line available 24/7. It has trained cancer information specialists who answer calls and emails from people with cancer, their caregivers, family members and friends.
The center is provided by the American Cancer Society, which also helps people find local resources and cancer support groups in their area. You may reach the center by calling 1-800-227-2345.
Types of Support for Mesothelioma
When you or someone you love is diagnosed with mesothelioma, it can be difficult to move forward. That is why developing a mesothelioma support system is important for everyone involved in the cancer journey.
As a patient, you may feel overwhelmed, scared and anxious. That’s completely normal. In these challenging times, it is important for you to surround yourself with those you love. Building a strong mesothelioma support system can nurture your emotional well-being, lower your stress levels and ease your fear of the unknown. Good mental health is also important while navigating mesothelioma treatment and recovery.
If you double as a caregiver and family member, remember, a solid support system is also essential for your well-being. Taking on this new role is difficult, and it is not something you should do alone. Ask for help. You can build a reliable mesothelioma support network to assist you during this challenging time.
Professional help from a mental health counselor can help you or your loved one cope with depression and anxiety. These emotions may accompany any life-threatening illness, and this is especially true if you’re diagnosed with mesothelioma. Depression is not just feeling down or blue. It is a clinical condition that may require treatment by a professional.
Clinical depression comes with a unique set of symptoms. Among them are mood swings, fatigue, feelings of sadness or emptiness that last for more than a few days, feelings of helplessness or worthlessness and changes in eating and sleeping habits.
Sources of emotional support may come from:
- Mental health counseling
- Grief counseling
- Mesothelioma support groups
You or your caregiver can find emotional support through online support groups, counseling services and hospice care. Local churches and other places of worship serve as valuable sources of spiritual support, while community centers may offer free or reduced-cost counseling for cancer patients and their family members. Organizations such as the United Way and the American Cancer Society can connect you to emotional support services in your area.
Emotional support may also come from the mesothelioma community. Annual fundraising events and other opportunities raise awareness about mesothelioma and the dangers of asbestos exposure and help raise money for research.
Mesothelioma patients often face emotional and financial burdens when undergoing cancer treatment. Thankfully, several organizations help ease the burden of unexpected costs and emotional stress for patients and their families.
Mesothelioma patients usually travel long distances to receive the best care. Organizations such as the Air Charity Network and Corporate Angel Network provide free flights to cancer patients who need air transportation to specialty treatment centers. The American Cancer Society’s Hope Lodge has more than 30 locations across the country. It provides cancer patients and their caregivers a home away from home when traveling for treatment.
Military veterans with mesothelioma and their family members can stay in one of 86 houses operated by the Fisher House Foundation. The nationwide network of homes has provided more than 9 million nights of lodging for veterans since 1990.
Mesothelioma treatment is costly. People affected by this rare cancer have options for financial assistance, including grants, government programs such as Medicare and Social Security, and asbestos-specific legal compensation. Veterans diagnosed with mesothelioma are eligible for VA benefits and other forms of financial assistance. In addition to paying for treatment, financial compensation from these programs helps mesothelioma patients cover the costs of medical equipment, home care, travel expenses and end-of-life decisions.
Caregiver and Family Support
Mesothelioma caregivers have unique needs separate from patients that require support to avoid caregiver burnout. Caregivers are the strongest source of support for mesothelioma patients, but it is essential that caregivers find their own types of support.
- How to Tell Family and Friends About Cancer: You get to decide who you tell, as well as how you tell them.
- Understanding Caregiver Duties: The responsibilities of a caregiver may feel endless, and it’s important to find other people who can help you with these tasks.
- Dealing with Caregiver Burnout: Caregiver burnout is serious and can lead to health problems if not addressed quickly.
- Planning Ahead for a Medical Emergency: It’s important to have a plan and be fully prepared in case of a medical emergency.
- How to Prepare for a Natural Disaster: Creating a natural disaster plan will greatly reduce stress in the event of something such as a hurricane, flood or tornado.
- Making End-of-Life Decisions: While it is difficult to approach this subject, it is essential to plan ahead for end-of-life decisions to ensure your loved one’s wishes are carried out.
Experiencing grief is a normal response to losing someone you love. Joining support groups or counseling sessions can make a huge difference in your life. It takes time to cope with the loss of a loved one. Goals of grief counseling include gaining understanding about grief, identifying and expressing related emotions, learning to make decisions alone, accepting the loss and beginning new relationships.
If you are like many people who are struggling with grief, you are striving for a sense of normalcy. When participating in grief counseling sessions, hospice support staff or a licensed counselor can help you set goals for recovery. They can guide you toward achieving them.
Support Groups for Mesothelioma and Cancer
Because mesothelioma is such a rare cancer, it can be valuable for survivors to find people living with the same diagnosis. It is also beneficial for mesothelioma caregivers to talk with others caring for patients.
Mesothelioma-focused support outlets are available online and over the phone, and general cancer support groups are available in person. It’s helpful to join several support groups to gain access to different sources of support when you need them. You may want an in-person group for when you’re feeling well enough to attend, and an online group for when you aren’t.
Online Support Groups
Patients and caregivers benefit from easy online access to these groups. You can access support from the comfort of your home, which is helpful for patients who don’t feel well enough to attend an in-person group.
For example, the Coping with Mesothelioma: Online Support Group from Asbestos.com meets monthly virtually or by phone. This support group focuses solely on people affected by mesothelioma and is led by licensed mental health counselor Dana Nolan.
The Mesothelioma Center Facebook Group is a private Facebook group that is a safe space where people often post personal stories of day-to-day challenges and milestones. Anyone struggling to cope with a mesothelioma diagnosis is welcome to join this group.
Other beneficial online support groups for people facing mesothelioma include:
- Cancer Support Community: As one of the largest professionally led nonprofit cancer support networks, Cancer Support Community offers an online “Living Room” for patients to participate in online discussion boards facilitated by a licensed counselor.
- CaringBridge: CaringBridge connects people with health issues to family and friends to help caregivers communicate and coordinate care.
- Share the Care: Share the Care offers caregiver guidebooks, tools and educational information to reduce the stress involved in caring for someone with cancer.
- I Had Cancer: Survivors can use this website to share personal experiences and reach out to other survivors with the same mesothelioma diagnosis. Long-term survivors also can mentor those who were recently diagnosed with the disease.
- Inspire: Using a series of discussion forums, Inspire offers communities based on specific disease diagnoses and treatment options. The site partners with larger organizations, such as the American Lung Association, to provide related resources in each community discussion.
- Daily Strength: Daily Strength offers an online community of support for people with mesothelioma.
- WhatNext: WhatNext provides the Living with Mesothelioma online community where patients share experiences and get important questions answered.
- CanCare: CanCare offers information and virtual support groups. It matches people currently facing a cancer diagnosis with a cancer survivor who serves as a supportive mentor.
Phone Support Groups
Some people prefer to connect over the phone rather than virtually with a camera or in person. This provides an element of privacy that helps people feel safe to express their feelings.
The monthly Coping with Mesothelioma: Online Support Group from Asbestos.com is accessible via phone. Just reach out to us after you register, and we’ll provide you with a toll-free number to call.
The MARF Telephonic Group also meets monthly over the phone to support people with mesothelioma.
Local Support Groups
Mesothelioma-specific support groups are not easy to find because the disease is rare.
Some cancer centers that treat mesothelioma, such as Brigham and Women’s Hospital, offer support groups for people with mesothelioma. Brigham and Women’s Hospital offers a weekly mesothelioma support group for caregivers and family members, led by social workers and chaplains. The group meets Wednesdays from 12-1 p.m. in the multipurpose room on the 11th floor of the hospital.
To find support groups in your area, ask your oncology team for a list of local resources.
How to Find the Right Support Group
Searching online and asking your oncology team about support groups are great places to start.
You want to look for a group that suits your needs and schedule. A group led by a licensed mental health counselor is a plus, but good groups are also led by volunteers who have prior experience with the disease.
The monthly Coping with Mesothelioma: Online Support Group from Asbestos.com offers survivor support and access to mental health experts as well as medical experts, including a registered nurse.
Benefits of Support Groups
Mesothelioma may be uncommon, but you’re not alone in this journey. Support groups provide a safe place to share your experiences. Licensed counselors and social workers with expertise and training lead groups that can help you cope with the disease.
Studies show patients can improve their mood and reduce their anxiety, stress levels, emotional distress, fatigue and pain by participating in support groups. Many mesothelioma support groups share new resources that could aid you outside of the group.
Support groups are not just for patients. Family caregivers are often taking on a new role and may need encouragement while coping with changes in their lives.
Some studies show cancer support group participants have higher survival rates and increased quality of life. Many mesothelioma survivors have credited a strong support system as a reason for their survivorship, improved well-being and feeling empowered.
A 2022 systematic review published in Psyco-Oncology analyzed 29 studies on the effects of support groups in helping cancer patients feel empowered to face the diagnosis. The review found a positive association between support groups and cancer patients feeling empowered personally and empowered to take action to improve their situation.
Mesothelioma Community Support
Raising awareness about mesothelioma drives research efforts in the hope of finding a cure.
Several national events and fundraising campaigns across the nation get the word out, but every day is an opportunity for patients and their family members to advocate for research and awareness.
Advocacy efforts to raise awareness and funds for research help those with mesothelioma feel supported and provide hope that a cure will be discovered.
Mesothelioma Awareness Day
Since 2010, Congress has recognized Sept. 26 as National Mesothelioma Awareness Day. Patients and family members are encouraged to wear blue and share photos and stories on social media of how this cancer changed their lives.
Miles for Meso
Miles for Meso is a fundraiser held annually in honor of Mesothelioma Awareness Day. People gather in person or virtually to walk or run in support of families facing a difficult diagnosis. Money raised goes toward research to discover new mesothelioma treatments.
International Symposium on Malignant Pleural Mesothelioma
The Mesothelioma Applied Research Foundation organizes the annual International Symposium on Malignant Pleural Mesothelioma. The conference brings together patients and experts to discuss the latest advances in treatment.
National Asbestos Awareness Week
National Asbestos Awareness Week typically occurs in the spring and gives patients and their family members an opportunity to educate others about the dangers of asbestos exposure, which is the primary cause of mesothelioma.
The Asbestos Disease Awareness Organization, the leading nonprofit in the fight to ban asbestos in the United States, hosts the multiday International Asbestos Awareness Conference annually.