Mesothelioma Resources

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 are detailed below.

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.

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.

Support groups offer a shared connection and experience with other mesothelioma survivors who have the same illness, enabling you to feel less alone and more connected.

“Nurses are recommended to support patients with malignant pleural mesothelioma to find meaning in their lives and encourage strategies for adapting to a ‘new norm’, as well as promoting control through healthy lifestyle choices, autonomous decision making and spiritual practices.”

Local Support Groups

Local support groups provide face-to-face contact and are an excellent way to meet others to bond with and share support 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 others diagnosed with mesothelioma, 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 ones.
• NCIC: NCIC serves as a center point to connect you with just the right kind of support network.

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 [email protected]

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.

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.

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.

A few avenues to help you access financial support for mesothelioma are listed below.

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.

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.

Mesothelioma Research Foundation of America (MesoRFA)

MesoRFA provides a list of resources for financial assistance for mesothelioma cancer patients.

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.

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 services for mental health and 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, such as races or concerts
• 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 as 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.

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 following routes.

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 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.

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.

“Participants wanted the right support at the right time and suggested that they could not take in information about supportive/palliative care in the early stages due to the overwhelming amount of information provided. Pursuing compensation dictates how limited time together is spent and requires a joint effort between the patient and carer.”

Below, find examples of ways to access mesothelioma support for families and caregivers. To register and join these groups, contact [email protected]

Mesothelioma Loss Support

The Meso Foundation has a private Facebook page for families 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.

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.

The Mesothelioma Hope Team also offers 24/7 support from dedicated Patient Advocates. Contact us today.