Mesothelioma Support

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For those who have received the devastating news of a mesothelioma diagnosis, ongoing support in all aspects of life is essential. The level of support a patient and their family has during diagnosis, treatment and follow-up makes a significant difference in the whole process.

Mesothelioma Support Overview

Plenty of support options are available to patients, and they come in a range of forms and services. Patients and their families should view receiving support as one part of the overall treatment experience.

Here is what all patients going through mesothelioma treatment should know about asking for and receiving support:

  • Support options catering specifically to your time of mesothelioma diagnosis are available
  • Emotional, mental, spiritual and financial supports are available
  • People who have gone through mesothelioma treatment, and survived, are now offering support and advocacy
  • Entire organizations are dedicated to supporting mesothelioma patients and their families
  • Caregivers should also seek support to maintain their own wellbeing

What Mesothelioma Support Options Are Available?

Mesothelioma patients should know that, although it’s a rare disease, mesothelioma has a host of support options behind it. Though an uncommon disease, it’s becoming more well-known publicly. Because many of the nation’s top cancer centers have in-house mesothelioma programs, they also offer support and connections to mesothelioma patients due to the many patients they’ve treated over the years.

When mesothelioma patients first receive their diagnosis, their initial response may be to feel completely alone. While this is a totally normal reaction, patients should know that they are anything but alone. It’s just a matter of knowing what support options are available and how to access them.

Generally, cancer support options fall into a few main categories:

  • Emotional
  • Mental
  • Physical
  • Spiritual
  • Financial
  • Legal

Many support options are holistic and overlap to provide relief in multiple areas. For example, financial assistance alleviates a massive emotional and mental burden that comes with treatment costs and logistics. Travel assistance eliminates a physical barrier by helping patients get to their cancer center of choice.

Below are some of the main types of patient support options available to you and your family.

Mesothelioma Support Groups

It’s common for patients recently diagnosed with mesothelioma to try to cope with how this happened to them. As a result, they may feel isolated. To make sense of this heartbreaking situation, patients can connect with others who are going through the same situation.

Support groups are held in meetings, by phone or through online forums and have participants from all over who are going through or have gone through mesothelioma treatments. Having someone to relate to can offer tremendous emotional and mental relief and help in the grieving process.

One of the largest providers of mesothelioma support groups is the Mesothelioma Applied Research Foundation. This national non-profit organization raises funds for ongoing research and patient advocacy resources. They host bi-weekly telephonic meetings for patients, caregivers, and spouses as well as a handful of Facebook groups.

Mesothelioma Survivors Networks

Though mesothelioma is considered incurable, there are many stories of survivors who beat the odds. Many of these survivors underwent aggressive surgeries and multiple rounds of chemotherapy and were treated with new, novel therapies.

The one thing these survivors have in common is their will to live and their self-empowerment to take control of their own health.

Mesothelioma survivors and patients who have already undergone treatment can help current patients by sharing their stories. They can offer clear guidance and outline what the patient can expect as they move forward in their treatment process. Many survivors and their families have offered to be a resource to anyone currently going through mesothelioma treatments.

Counseling and Therapy

Though it’s important to connect with others who can relate to you, it’s also important to seek professional counseling if you feel you need it. Many patients develop depression, anxiety and other psychological issues after diagnosis. This is normal, and professionals have the experience and compassion to identify mental health symptoms and treat them in many ways.

Many cancer centers offer counseling services in-house. However, patients may choose to seek counseling on their own by finding a therapist who they can open up to. If you’ve been recently diagnosed with mesothelioma and are struggling with symptoms of depression or anxiety, contact a trained therapist or counselor today.

Travel Funding and Options

The top mesothelioma treatment programs are at cancer centers located in major cities across the nation. Unfortunately, for patients residing in rural regions or areas outside these major centers, potentially lengthy travel is inevitable.

Patients and their families are already burdened by the diagnosis itself as well as all the additional financial stresses that go with it. Travel costs are the last thing families want to struggle with. Many patients have to make several trips to the treatment facility, and the expenses can add up quickly.

Various organizations sponsor families and connect them with free or discounted airfare. Some organizations even arrange for patients to fly on private corporate flights to the city where their cancer center is located.

Accommodations and Housing

Families also need to consider the costs of accommodations and lodging when they travel to the cancer centers for treatment. Many charities and cancer organizations raise funds to sponsor families and cover these costs. Many cancer centers themselves also have housing options for families traveling from out of town. Unfortunately, these are usually in high demand, as cancer centers treat thousands of patients. Hotels located near hospitals sometimes offer discounted accommodations while patients receive treatment.

For veterans, Fisher House Foundations are located on the grounds of major VA hospitals. Veterans receiving treatment at the VA hospital can apply to stay at Fisher Houses while undergoing treatment.

Financial Support and Compensation

All mesothelioma patients should know about the legal and financial compensation options available to them. People who developed mesothelioma are victims of negligence by asbestos producers and distributors. Today, it’s well-known that companies knew of the health risks associated with asbestos products but chose to hide the facts and continue selling their products.

When the truth came out about the dangers of asbestos, the legal system established grounds for lawsuits against manufacturers to compensate parties who suffered damages. Today, tort law (civil wrongs) surrounding asbestos is one of the longest-running mass lawsuits in the country.

In addition to pursuing legal compensation for your treatment costs and other damages, there are additional services and programs for civilians and veterans that can provide financial assistance or complete coverage for medical expenses.

Here are some of the legal and financial assistance options that may be available to you:

  • Private Health Insurance: If you’re on a private health insurance plan, then you likely qualify for full or partial coverage of your medical bills and other costs associated with undergoing treatment. The nation’s largest cancer centers are fully equipped to work with dozens of insurance providers and can help you with your insurance claims.
  • VA Benefits: Veterans who were exposed to asbestos during their years in active duty, and who have since developed mesothelioma, may be eligible for compensation through Veterans Affairs. Find out more about VA disability benefits and eligibility.
  • Government Assistance: Mesothelioma patients may be entitled to government financial assistance to cover healthcare costs. Medicaid is a federal healthcare program that assists low-income families. Medicare is a federal healthcare program that provides funding to those who are over 65 regardless of income.
  • Legal Compensation: Victims of asbestos exposure, including mesothelioma patients, can go through a legal process to receive compensation from asbestos companies. These companies have been deemed responsible for many of the health problems resulting from asbestos exposure. By hiring a mesothelioma lawyer, you and your family can obtain financial compensation through a mesothelioma lawsuit to cover damages and treatments.
  • Asbestos Trust Funds: Billions of dollars from bankrupt asbestos manufacturers have been placed into trust funds. Victims of asbestos exposure, through legal means, can access compensation from these trust funds to help pay for treatments and cover other damages. Patients can work with mesothelioma lawyers to help them file a claim and receive compensation quickly.

Treating mesothelioma effectively requires specialized medical care. Patients often undergo multiple forms of treatment over an extended period. These costs add up, and without adequate insurance coverage, the surmounting financial burden can create further stress to an already difficult situation.

Veterans Mesothelioma Support and Counseling

The tragic nature of asbestos and its proliferation means that roughly one-third of mesothelioma victims are veterans. Asbestos was used extensively throughout the armed forces and, as a result, veterans of all ages and ranks were exposed on an ongoing basis.

Veteran Support Update

Veterans have support resources available to them outside of civilian programs. One of the largest support networks for veterans suffering from all ranges of health conditions, including mesothelioma, is the National Veterans Foundation (NVF). This organization is run by veterans for veterans and offers a range of assistance from food to finance. They also host various crisis lines available to all active and non-active duty members.

It’s normal and understandable for veterans diagnosed with mesothelioma to undergo emotional distress, and lifelines like those offered by the NVF can help veterans through trauma. There are also resources dedicated specifically to women veterans for assistance on all issues healthcare-related or otherwise.

Mesothelioma Hospice Care

Hospice care is a healthcare philosophy that focuses on the end-of-life needs of chronically ill individuals. Hospice care providers focus on the basic needs of the patient to improve their quality of life as they live out their remaining months or weeks. Patients who choose hospice care can have their treatment tailored to their exact needs from physical to emotional to spiritual care and support.

Healthcare workers who specialize in hospice and palliative support are extremely compassionate and attentive. Often, hospice care workers will get to know the family members as well. As they learn more about the patient and their family, they can recommend certain types of care or counseling services as well.

Some of the ways that hospice care workers support end-of-life patients include:

  • Pain management and treating symptoms to improve quality of life
  • Emotional support for the patient and their family through compassion and understanding
  • Relieving the primary caregiver from their role to give them time and space to recharge
  • Versatile support ranging from weekly to daily to round-the-clock

If you or your family members are considering hospice care as a support option, it’s important to find someone who is experienced, compassionate and is a good fit for your unique needs. Ask about their care philosophy, past experiences in dealing with cancer patients as well as what’s unique about their approach to hospice care.

Patients should also know that if they’ve chosen to go with hospice care, it doesn’t mean they’re giving up or choosing defeat. Some patients simply stop responding to treatments provided at cancer centers, and hospice care simply becomes a better option for improving quality of life.

Mesothelioma Awareness and Advocacy

Mesothelioma awareness is growing due to it being related to asbestos exposure and the number of cases that have developed in recent years. Many patients and families who go through a mesothelioma diagnosis and treatment go on to become fierce advocates for research, treatment development and raising awareness.

There are several awareness and advocacy programs and organizations available to patients, family members and those who wish to become patient advocates.

Some of the top mesothelioma advocacy groups include:

Mesothelioma Applied Research Foundation

American Cancer Society

Canadian Mesothelioma Foundation (available to Americans as well)

If you’re interested in getting involved in these groups or you’d like to learn more about their support resources, you can contact them today. Or, reach out to a Mesothelioma Help Now patient advocate who can help answer questions about receiving support, including legal compensation.

View Author and Sources

  1. Mesothelioma Applied Research Foundation, “Mesothelioma Support Groups.” Retrieved from: Accessed on November 17, 2017.
  2. American Cancer Society, “Find Support Programs and Services in Your Area.”, Retrieved from: Accessed on November 17, 2017.
  3. Canadian Mesothelioma Foundation, “Compensation.” Retrieved from: Accessed on November 17, 2017.

Last modified: May 24, 2018