Mesothelioma Support and Resources
Mesothelioma is a rare and aggressive type of cancer. It averages 3,000 new diagnoses each year in the United States. Support is available to patients and their caregivers during this trying time. In-person and online support groups and one-on-one mentorship are just a few options available.
Mesothelioma patients and their caregivers should not have to face these challenges alone. An abundance of support is available for mesothelioma patients, caregivers, families and friends.
Coping with a Mesothelioma Diagnosis
A mesothelioma diagnosis raises a combination of questions and fears. Patients face painful treatment side effects with a potentially short life expectancy. Caregivers may become overwhelmed as they attempt to remain strong for the patient’s sake while processing their own emotions about the diagnosis and its impact on their lives.
The Role of Mental Health in Prognoses
Psychological factors have been linked to a higher quality of life and a reduction of pain in cancer patients. According to the MD Anderson Center, a positive attitude and a supportive environment are among the most important factors in determining a prognosis.
- Medically Reviewed By: Patricia Shelton, M.D.
- Legally Reviewed By: Sam Taylor
- Last Modified March 21, 2023
Support Groups
Support groups can help mesothelioma patients feel less alone because they allow patients to connect with others who understand how they feel, perhaps better than their families can. Support groups help patients cope with treatment, find solutions for practical issues and provide an increased sense of hope. They have been linked to an improved quality of life and higher survival outcomes.
Caregivers also need support. Caregivers suffer alongside the patient. They are often family members or close friends who are not professional caregivers. They may feel helpless watching their loved one suffer painful symptoms and side effects. Their financial situation may change as they have to miss days at work or sacrifice employment altogether.
They face burnout and overwhelm as they direct their attention to the patient’s needs while placing their own on the back burner. They may experience changes in their physical and mental health. Fortunately, there are many support groups available for caregivers as well.
Caregivers also need support. Caregivers suffer alongside the patient. They are often family members or close friends who are not professional caregivers. They may feel helpless watching their loved one suffer painful symptoms and side effects. Their financial situation may change as they have to miss days at work or sacrifice employment altogether.
They face burnout and overwhelm as they direct their attention to the patient’s needs while placing their own on the back burner. They may experience changes in their physical and mental health. Fortunately, there are many support groups available for caregivers as well.
Local Support Groups
In-person support groups are available in many cities for patients, caregivers and family members. You are more likely to find a general cancer support group than a mesothelioma-specific group locally since mesothelioma is relatively rare. To find a local support group:
- Check with your cancer hospital’s social worker or your oncologist
- Ask other patients
- Contact your local health department
- Search the American Cancer Society’s website to find support groups in your area
Local Resources for Caregivers
The National Family Caregiver Support Program provides the following services to qualified family caregivers:
- Resource information
- Assistance gaining access to services
- Individual counseling
- Organization of support groups
- Caregiver training
- Respite care (a break from caregiving)
This program is usually available through your local aging and disability network.
Online Support Groups
Many mesothelioma survivors and charitable organizations have established active online support communities for individuals with mesothelioma and their caregivers. Since online support groups can include people from all over the world, you are more likely to connect with people whose situation closely mirrors your own.
Mesothelioma Applied Research Foundation
The Mesothelioma Applied Research Foundation (Meso Foundation) offers the following monthly live meetings that you can access via Zoom or telephone:
- Patient support group
- Caregiver support group
- Young widows and widowers support group
- Survivor stories
- Spousal loss conversation group, which is hosted twice monthly
The Meso Foundation also offers the following private Facebook groups, which allow patients, caregivers and loved ones to receive 24/7 support:
- Mesothelioma Straight Talk: General Discussion
- Mesothelioma Straight Talk: Patient Support
- Mesothelioma Straight Talk: Caregivers - Advanced Disease
- Mesothelioma Straight Talk: Caregivers - Early Disease
- Mesothelioma: Loss Support Group
MD Anderson Support Groups
MD Anderson Center is a cancer treatment center that offers virtual support groups to all cancer patients and their caregivers. As many as 28 different groups are offered to allow all interested parties to find the group in which they feel most comfortable. While the center does not offer a mesothelioma-specific support group, it does offer the following on a weekly basis:
- General cancer patient support group
- Caregiver support group
- Cancer survivorship group
- Advanced stage cancer support group for patients
- Well Wives support group
- Circle of Hope bereavement and loss support group
The Cancer Support Community
The mission of the Cancer Support Community is to ensure that everyone who is impacted by cancer is “empowered by knowledge, strengthened by action, and sustained by community.” The organization’s slogan is “Community is stronger than cancer.”
It offers online support groups for patients, caregivers and loved ones as well as opportunities to tell their stories, volunteer and communicate with friends and family members through their platform.
IHadCancer
IHadCancer is a support community organized by individuals who are undergoing cancer treatment or have survived treatment where they share inspirational cancer stories, write letters to cancer and connect with each other.
Inspire
Inspire is an online cancer support community for patients, caregivers and family members where you can post questions and answer questions posted by others.
One-on-One Support
Your cancer experience is very personal, and you may prefer a more personalized support method. The resources below provide services where patients are matched to a cancer survivor who provides support and mentorship through the process.
Online Resources to Update Others
During the course of an illness, it can be difficult to manage a barrage of well-intended communications from friends and family members. Several online resources can help you keep your family and friends up to date on your health status and may even provide opportunities to branch out.
CaringBridge
CaringBridge is a free tool that provides an easy way to set up a personalized website where you can post updates with just a few clicks. The site gives you control over who sees your page and allows you to see who views your updates.
Blogging
If you are more tech-savvy, you can document your progress on a blog. A blog is just a website where you post periodic updates. Blogs can be used to reach small or large audiences. Blogging is an effective tool to build an audience and inspire others.
Vlogging is a video version of a blog, where you speak via video rather than writing your updates. This can be accomplished on popular social media platforms like TikTok and YouTube or through a blogging platform.
Blogging can have a positive impact on mindset in individuals suffering from terminal illnesses or chronic pain by providing a meaningful activity leading to more positive pain management and social connectedness. It may inspire others.
Vlogging is a video version of a blog, where you speak via video rather than writing your updates. This can be accomplished on popular social media platforms like TikTok and YouTube or through a blogging platform.
Blogging can have a positive impact on mindset in individuals suffering from terminal illnesses or chronic pain by providing a meaningful activity leading to more positive pain management and social connectedness. It may inspire others.
Making a difference helps cancer survivors and those still battling cancer experience benefits such as the following:
- Acceptance of cancer as part of life
- Reduced fear
- Expanded knowledge about cancer
- A stronger feeling of being in control
- New meaning in life
- Greater connectedness with others
Unite to Support Awareness
The Asbestos Disease Awareness Organization (ADAO) is dedicated to uniting victims of asbestos exposure and preventing asbestos-related illnesses like mesothelioma through a global ban on asbestos.
Every year, ADAO hosts the International Asbestos Awareness and Prevention Conference. The 17th annual conference will be held virtually September 16-17, 2022.
Every year, ADAO hosts the International Asbestos Awareness and Prevention Conference. The 17th annual conference will be held virtually September 16-17, 2022.
Educational Resources
Educating yourself about your illness is an important component of your overall outcome. Patients who are well-informed are better able to cope with their illnesses and participate in their own care. This ultimately leads to better treatment outcomes.
Connecting with survivors is an effective way to start educating yourself. Additional educational resources include the following:
Connecting with survivors is an effective way to start educating yourself. Additional educational resources include the following:
- The Meso Foundation's International Symposium on Malignant Mesothelioma - A community conference for patients, caregivers and professionals will take place virtually and in person July 22-23, 2022.
- Cancer.net’s mesothelioma guide
- The American Cancer Society’s mesothelioma guide
- The Lanier Law Firm's comprehensive mesothelioma pages
The Lanier Law Firm is one of the most experienced mesothelioma law firms in the country. We help mesothelioma patients hold those accountable who exposed them to asbestos. You may be entitled to substantial compensation. Contact us today to schedule a free consultation.
