Mesothelioma support groups help patients, families and caregivers throughout the cancer journey. Various organizations provide in-person and online forums where individuals can connect and share experiences. By participating in a support group, patients may improve emotional wellbeing and quality of life.
01. Support Group Benefits
The Benefits of Joining a Mesothelioma Support Group
A cancer diagnosis can put a strain on an individual’s emotional and mental health. Mesothelioma patients may feel isolated, stressed and overwhelmed. By connecting with others, patients can seek strength and hope during their cancer journey.
Family members, caregivers and mesothelioma survivors also face hardships and need support. Anyone impacted by a cancer diagnosis such as mesothelioma can benefit from the support of others in a similar situation.
Benefits of participating in a support group include:
- Companionship within the mesothelioma community: Support groups can help cancer patients and their loved ones know they are not alone. Group members can find support and comfort from people facing similar challenges.
- Improved emotional wellbeing: Support groups can help patients and family members cope with anxiety, depression, fatigue and stress. Participants in the group can share their similar challenges and coping methods.
- Inspiration and hope: Connecting with other patients and survivors can provide a sense of hope for the future during an uncertain time. Talking with others can also help patients feel motivated and empowered.
- Professional support: Professional social workers, therapists, financial planners and doctors teach patients skills to cope with the stress and challenges of a cancer diagnosis. Working with a professional can help patients and loved ones express their feelings in a supportive environment. These professionals can help alleviate feelings of anxiety and isolation.
Participation in these groups can provide patients and their loved ones emotional, medical and practical support.
Resources for Mesothelioma Patients
02. Types of Support Groups
Types of Support Groups Available for the Mesothelioma Community
A mesothelioma diagnosis can take an emotional and physical toll on patients, loved ones and caregivers. There are different types of support groups to help all of those impacted by a mesothelioma diagnosis.
Mesothelioma support groups may assist:
- Mesothelioma patients: Mesothelioma is a rare disease, which can cause patients to feel isolated. Support groups allow mesothelioma cancer patients to connect with others facing similar experiences.
- Mesothelioma survivors: After treatment ends, mesothelioma survivors may continue to face physical and emotional challenges. Support groups can help survivors learn from others and adjust to the new normal after treatment.
- Family members: A patient’s family faces their own emotional struggles after a loved one’s diagnosis. Support groups give family members a forum to share their experiences with others and express their emotions.
- Caregivers: Mesothelioma caregivers may face emotional distress and physical symptoms in their role. It’s important for caregivers to seek support and resources to properly care for others.
- Veterans: Service members and veterans are disproportionately affected by mesothelioma. Veteran support organizations can help meet the unique needs of patients who served in the military.
Many nonprofits and organizations have created support groups and resources to help mesothelioma patients and their loved ones cope with the disease.
03. Support Organizations
Mesothelioma Support Organizations
Although mesothelioma is a rare disease, there are organizations dedicated to helping patients and loved ones affected by asbestos exposure. These organizations provide resources, professional support and a sense of community for mesothelioma cancer patients. Patients and loved ones can seek support in person, through online platforms and over the phone.
Mesothelioma-Specific Support Groups
Patients can receive focused support in-person or from home by joining an online support group. Patients can connect with members of the mesothelioma community who understand the disease. There are also mesothelioma support groups available for family members, survivors and caregivers.
Some mesothelioma support groups include:
Brigham and Women’s Mesothelioma Orientation Group
Brigham and Women’s Hospital in Boston, Massachusetts, offers an orientation support group for patients recently diagnosed with mesothelioma. Patients receive information from doctors, researchers, social workers and chaplains.
Brigham and Women’s Mesothelioma Support Group for Family Members
Brigham and Women’s Hospital also provides a support group for family members of mesothelioma patients. Members discuss caregiver issues and how to maintain emotional well-being with social workers and chaplains.
Mesothelioma Applied Research Foundation’s support groups
The Meso Foundation has several Facebook support groups for patients, families, caregivers and those who have lost a loved one. The Meso Foundation is a nonprofit made up of mesothelioma patients, advocates, doctors and researchers.
Mesothelioma patients and loved ones should ask their doctors about support groups in their area. Many cancer centers have support groups on-site and doctors can recommend options to patients and family members.
Support Groups for the Larger Cancer Community
There are many support groups available to all members of the cancer community. Cancer support groups offer a place for all cancer patients, their loved ones and caregivers to connect and share their experiences.
Support organizations for the cancer community include:
The Cancer Support Community offers access to live chat groups and discussion boards. Patients and family members can also call into the Cancer Support Helpline. Helpline operators connect callers to a variety of support services, such as housing resources, support groups and more. Patients can also create a personalized web page to share updates with family and friends.
Cancer Survivors Network (CSN)
The CSN is an online community for cancer patients and families. It allows members of the cancer community to connect with others through discussion boards and chat rooms. Patients can also create a personalized blog to update family and friends.
CaringBridge is a nonprofit organization that allows patients to create free personalized web pages. Patients can use these pages to keep family and friends updated on their health journey. Patients and their loved ones can also find resources and read stories from other users.
Daily Strength provides a network of online discussion boards where users can help other patients cope with their diagnosis. Discussion boards cover a variety of topics, including mesothelioma and other cancers, mental health and other personal challenges.
I Had Cancer is an online cancer support community created to empower cancer survivors, patients and caregivers. The website offers discussion boards and blogs where individuals can connect and share stories.
Inspire is an online social network for patients and caregivers to connect with those going through a similar diagnosis. On the app, patients and loved ones can share personal stories, experiences with treatment and other aspects of their health journey.
Share The Care is an organization providing support and resources to caregivers. Their mission is to improve the quality of life and mental health of individuals caring for a loved one with an illness.
WhatNext (Cancer Support Network)
WhatNext helps cancer patients and caregivers find information about their diagnosis and treatment. Patients can also contact others who are fighting against cancer.
04. Finding a Support Group
How to Find the Right Support Group for You
When searching for a support group to join, individuals should consider the type of support they need. Some people may prefer to meet in-person, while others prefer to share experiences online. Depending on an individual’s situation, there are multiple options available for patients, survivors and caregivers.
When choosing a support group, a person may consider:
- The mission statement of the support group
- What time the group meets
- If the group meets in person, over the phone or online
- The format of the group’s meetings
- Who leads the group (a patient, survivor, medical professional, etc.)
Researching support groups online can be a good way for individuals to find options. Mesothelioma patients, survivors and others may also seek recommendations from their doctor or care team. It’s important for individuals to connect with a support group that is best suited for their unique needs.
Support Groups in Your Area
In-person meetings are the most traditional form of cancer support groups. These types of support groups allow patients to express themselves and connect with others face-to-face.
Patients being treated in a cancer center should ask their doctor or social worker if there are support groups at the treatment facility or nearby. Other places, such as libraries, community centers and faith centers, may also offer meetings for individuals affected by cancer.
Online Support Groups
An online support group is a useful option for patients and loved ones with time constraints and health restrictions. Doctor’s appointments and busy treatment schedules can make it difficult for patients to find time for another scheduled meeting.
By participating in an online support group, patients can communicate through discussion boards and social media at any time. They can also connect with sympathetic individuals across the country from the comfort of their homes.
Telephone Support Groups
Patients may also be able to find telephonic support options. Some cancer centers and organizations offer support groups via scheduled conference calls. These can be a good option for patients who cannot find a local support group or cannot travel for in-person sessions.
05. Community Events
Annual Events for More Support in the Mesothelioma Community
Along with regular support group meetings, members of the mesothelioma community can attend events and participate in awareness days throughout the year. These events allow individuals to meet and learn about advancements in mesothelioma care.
Mesothelioma Awareness Day
Mesothelioma Awareness Day is recognized annually on September 26th. The day is an opportunity for people to share their mesothelioma stories and spread awareness for the disease.
Global Asbestos Awareness Week
Global Asbestos Awareness Week was created to educate people about the dangers of asbestos exposure. The goal of Asbestos Awareness Week is to decrease instances of asbestos exposure and advocate for a global asbestos ban. The week is recognized annually in the first full week of April.
International Symposium on Malignant Mesothelioma
Every year, the Mesothelioma Applied Research Foundation holds the International Symposium on Malignant Mesothelioma. The conference brings together survivors, patients, doctors and scientists to discuss advances in treatment and mesothelioma research.
Annual International Asbestos Awareness and Prevention Conference
The Asbestos Disease Awareness Organization (ADAO) holds an annual conference for all members of the mesothelioma community to share information and their experiences. Since 2005, the conference has hosted experts from more than 20 countries to advocate and spread awareness about mesothelioma and other asbestos-related diseases.
