Mesothelioma Support

Receiving a mesothelioma diagnosis can leave you feeling overwhelmed, shocked, and afraid. Thankfully, many support options are available to provide you and your family with financial, practical, and emotional aid. Mesothelioma support groups may take place locally, by phone, or online. Special awareness events for those living with mesothelioma provide extra support emotionally and by funding treatment efforts.

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Benefits of Support for Mesothelioma

Support for mesothelioma ranges from financial to emotional, but no matter the form it takes, mesothelioma support can offer many benefits for you and your family.

The benefits of mesothelioma support include:

  • Improved survival rates: Some research shows support groups improve the attitude of patients which may contribute to the length of survival.
  • Better quality of life: Meeting with others who are facing the same issues you are facing makes you feel less alone. You are also getting out and socializing with others and forming relationships with people experiencing what you are.
  • Connections with other victims: Talking to someone who understands how your symptoms are impacting your daily life or how the stress of the disease is weighing on your mind is comforting. Together, you can share ways to cope.
  • Reduced stress, depression, and anxiety: Holding all your concerns inside can create a great deal of stress. By seeking mesothelioma support, you are releasing your concerns to others who understand exactly what you are going through.
  • Strengthened sense of community: Mesothelioma can be isolating. As you share your experiences about living with mesothelioma, you may feel less alone and more able to fight this disease alongside others.

Emotional support can be as or even more important than financial and practical support. You should make sure all of your and your loved ones’ needs are met — not just the practical needs.

Quick Facts About Mesothelioma Support

  • According to the National Cancer Institute (NCI), some research shows that support groups improve quality of life and survival.
  • Mesothelioma support can take many forms. For example, some entities such as the American Cancer Society (ACS) help victims and their families afford lodging near mesothelioma cancer centers.
  • Mesothelioma-specific support groups may be easiest to find at mesothelioma cancer centers, by phone, or online.
  • National Mesothelioma Awareness Day, founded in 2004 by members of the Mesothelioma Applied Research Foundation, seeks to bring more attention and research funding to mesothelioma.

Types of Mesothelioma Support

Available mesothelioma support includes emotional support, practical assistance like help finding the right doctors, and financial support for expenses such as treatment.

Financial Mesothelioma Support

A mesothelioma diagnosis impacts more than your emotions —it upsets your entire life.

Suddenly, you and your family are thrust into a world of doctor’s appointments, tests, and mesothelioma treatment, potentially resulting in hundreds of thousands of dollars in unexpected costs. Financial support for mesothelioma exists to lift some of the burden weighing on you and your loved ones.

Financial support for mesothelioma may be offered by:

  • The American Cancer Society (ACS): At cancer.org, you can discover your eligibility for the financial support that ACS offers, such as free or subsidized medical equipment programs, insurance explanations, and budgeting guidance.
  • The Mesothelioma Applied Research Foundation (Meso Foundation): You can speak to a mesothelioma expert on staff at the Meso Foundation who can provide mesothelioma support on a range of financial issues.
  • The Mesothelioma Research Foundation of America (MesoRFA): MesoRFA provides a list of resources for financial assistance for mesothelioma cancer patients.
  • The National Cancer Information Center (NCIC): You can call the NCIC’s 24/7 helpline at 1-800-227-2345 to receive information about programs in your area to help with expenses not covered by insurance.

If you are concerned about treatment costs, reach out to your doctor, medical social worker, or your hospital’s business office to learn more about your options for financial mesothelioma support.

Mesothelioma Support for Travel

Mesothelioma is a rare and hard-to-treat cancer, so for the best results, you should seek treatment from an experienced mesothelioma doctor. However, it can be overwhelming to find such doctors and even more difficult to choose one.

Getting treated by a specialist also means you may have to travel to a top mesothelioma cancer center where mesothelioma doctors work and can provide you with the best support for your condition.

Traveling to and from cancer centers or paying for accommodation for the length of your treatment can be very expensive. Luckily, some organizations offer travel support to mesothelioma victims and their families.

Transportation support for mesothelioma includes: 

  • Meso Foundation support: The Meso Foundation offers grants for those traveling to see mesothelioma experts out of their area or for those enrolled in clinical trials.
  • ACS support: The ACS provides transportation to and from treatment and accommodation and temporary housing arrangements through discounted hotel rooms and Hope Lodges throughout the country.
  • Air Charity Network: This charitable organization provides air transportation to people in need of treatment at specialized facilities.
  • Angel Wheels To Healing: Angel Wheels provides non-emergency long distance ground transportation to financially disadvantaged patients.
  • Mesothelioma cancer centers: Most cancer centers offer their own lodging accommodations or partner with local hotels to offer discounted rooms for patients receiving cancer treatment.

An inability to travel should never stop you from getting the treatment you need. These programs exist to make sure travel doesn’t become too much of a burden for you or your family.

Emotional Mesothelioma Support

Fighting mesothelioma takes a huge emotional toll, often requiring more emotional support than your family and friends can give. In addition, the symptoms of mesothelioma can cause great pain and discomfort, negatively impacting your quality of life.

Thankfully, many programs and groups offer mesothelioma support for emotional needs.

Emotional support for mesothelioma includes:

  • Support from friends and family
  • Palliative and end-of-life care options provided by the ACS
  • Mesothelioma support groups
  • Cancer support groups

Mesothelioma is a rare and particularly aggressive cancer. While you may share many experiences with other cancer victims, your experience may also be different in many important ways.

Mesothelioma-specific support groups and awareness efforts are good places to find the specific support you may need.

Community Support

While receiving emotional support from individuals who understand what you’re going through is essential, mesothelioma support from the wider community can also help by raising awareness, funding treatment efforts, and helping you and other mesothelioma victims feel seen.

Community support for mesothelioma includes:

  • Mesothelioma awareness efforts
  • Fundraisers
  • Local hospital cancer awareness events

In particular, a few days exist in the United States with special relevance to mesothelioma victims and their loved ones.

National Mesothelioma Awareness Day

Since 2004, September 26th has been the annual commemoration of a disease that kills nearly 3,000 people each year in the U.S. The Meso Foundation steps up its efforts of awareness and fundraising on this fall day, flooding social media and promoting third party fundraising events all across the country.

Mesothelioma affects thousands every day, but supporters of its victims designate one day a year to honor these brave people and raise awareness for a disease few people know about.

National Asbestos Awareness Week

April 1st through the 7th is devoted to asbestos awareness and its dangers. In 2013, the U.S. Senate designated the first week in April Asbestos Awareness Week in order to draw attention to the disastrous effects of asbestos exposure on the lives of Americans throughout the decades and the country.

International Symposium on Malignant Pleural Mesothelioma

The International Symposium on Malignant Pleural Mesothelioma is a two-day conference created by the Meso Foundation for mesothelioma patients, their loved ones, and those who have lost someone to mesothelioma.

During the conference, you can learn about the latest treatment options, speak directly with top mesothelioma experts, and connect with others dealing with the devastating effects of mesothelioma.

Mesothelioma Support Groups

Mesothelioma support groups offer a dimension of care aimed at improving your sense of well-being. These groups are a safe place to go to share your day-to-day feelings, medical victories, and losses with people who truly understand and care about your journey.

Because of the manner in which you contracted your cancer — through asbestos exposure that may have been caused by negligent asbestos-containing product manufacturers — and the severity of mesothelioma, you may benefit from connecting with others dealing with similar thoughts, feelings, and emotions.

Groups for mesothelioma support offer a shared connection and experience with others who have the same illness, enabling you to feel less alone and more connected.

Local Support Groups

Local support groups provide face-to-face contact and are an excellent way to meet others who you may be able to bond and share support with in a more intimate manner than you could over the phone or online.

You can find local cancer or mesothelioma support groups through:

  • NCIC: NCIC can help lead you to a support group in your area by calling 1-800-227-2345.
  • Hospitals: Most hospitals offer cancer support groups for their patients. Ask a member of your care team for more information.
  • Mesothelioma cancer centers: One of the benefits of mesothelioma cancer centers is that most people suffering from mesothelioma travel there for treatment. Many of these centers host support groups for those who want to join.

Because mesothelioma is rare, there may not be a local support group near you that is dedicated solely to victims of the disease. Check all of these resources if you are interested in a local group for those suffering from cancer in general.

Phone Support Groups

If you are looking for support from and connection with other mesothelioma sufferers, phone support groups may be a good option.

You can find mesothelioma phone support groups through:

  • The Meso Foundation: Once a month, join a conference call from your own home to listen and talk about shared experiences, struggles, and victories.
  • The Meso Foundation’s Caregiver Support Group: If you’re a caregiver, dial in with other caregivers and receive the affirmation and validation many people need as they care for their loved one.
  • NCIC: NCIC serves as a center point to connect you with just the right kind of support group.

You may find that phone support groups offer a good compromise between joining a mesothelioma-specific group and enjoying the greater familiarity that may come from face-to-face support.

Online Support Groups

Local and phone mesothelioma support groups are only available at certain times, but there is no schedule for your struggles with mesothelioma. This is where mesothelioma online support groups may be most helpful.

You can find mesothelioma support groups online through:

  • The Mesothelioma Warriors Survivors: This private Facebook group mediated by the Meso Foundation is open and always available for its members. Join others in conversation whenever you need to talk, be encouraged, or just get any frustrations and sadness off your chest.
  • Mesothelioma Caregiver Conversations: The Meso Foundation welcomes caregivers to a Facebook page designed just for them.
  • Mesothelioma Loss Support: The Meso Foundation also has a Facebook page for those who have experienced loss due to mesothelioma.

To register and join any of the Meso Foundation’s Facebook groups, contact info@curemeso.org.

While these online communities may not be as intimate as face-to-face or even phone-based support groups, they can provide invaluable support when other means are not available.

Private Mesothelioma Support

Sometimes you may want to connect with someone who has specialized training supporting people with cancer. You may just want a one-on-one connection with someone who understands what you are going through. This is where private cancer and mesothelioma support programs come in.

You may find private mesothelioma support through:

  • The Cancer Support Community: Every day, the Cancer Support Community offers a 12-hour live chat from 9 a.m. – 9 p.m. with experienced counselors and resource specialists. They not only offer emotional support, but also provide information on local, regional, and national resources.
  • Cancer Hope Network: The Cancer Hope Network offers an opportunity to match you with a volunteer cancer survivor who shares your diagnosis. Contact usually takes place over the phone, but in-person and online support may be possible if requested.

Connecting with a single person may help you access the exact mesothelioma support you need, whether that means information on specific resources or a closer connection with someone who is struggling with the same issues as you are.

Mesothelioma Family and Caregiver Support

Mesothelioma support groups are also available for spouses, family members, and others dealing with the diagnosis of a loved one. These groups may provide support for coping with a mesothelioma diagnosis or grieving the loss of someone who died from mesothelioma. They may also focus on mesothelioma caregiver support.

Mesothelioma support for families and caregivers may be found through:

  • Mesothelioma Loss Support: The Meso Foundation has a private Facebook page for family and others who have lost someone to mesothelioma to mesothelioma.
  • Mesothelioma Caregiver Conversations: The Meso Foundation hosts a Facebook page to help connect caregivers for advice, resources, and emotional support.

To register and join these groups, contact info@curemeso.org.

Family members should not suffer alone with the hardships of seeing someone they love battle mesothelioma. In addition, caregivers to mesothelioma patients play an essential but incredibly difficult role, and getting the proper support is necessary for their and their loved one’s well being.

Find Support for Mesothelioma

You may feel anger toward the companies that allowed you to be exposed to a toxic substance, robbing you of your health and precious time with your loved ones. You may feel isolated — as if no one really understands or can cope with what you are going through.

A mesothelioma support group may offer kindness, knowledge, support, and a shared understanding that not even friends and family can provide.

Other forms of support for mesothelioma are also available, from the practical to the financial.

Mesothelioma Justice Network also offers 24/7 support, contact us today.

Mesothelioma Support Team
Reviewed by:AnnMarie Rotan, LCSW

Licensed Clinical Social Worker

  • Fact-Checked
  • Editor

AnnMarie Rotan is a Licensed Clinical Social Worker (LCSW) with over two decades of experience in the health care field — which includes hospital, outpatient clinical, home health, and mental health services. She also brings experience from the classroom as a professor, educating students in social work. Currently, she is an independent contractor for a home health agency, hospital, and teletherapy provider.

Stephanie KiddWritten by:

Editor-in-Chief

Stephanie Kidd grew up in a family of civil servants, blue-collar workers, and medical caregivers. Upon graduating Summa Cum Laude from Stetson University, she began her career specializing in worker safety regulations and communications. Now, a proud member of the American Medical Writers Association (AMWA) and Editor-in-Chief of the Mesothelioma Justice Network, Stephanie serves as a voice for mesothelioma victims and their families.

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