Mesothelioma Support
Page Edited by Patient Advocate Dave FosterThis page has been fact checked by an experienced mesothelioma Patient Advocate. Sources of information are listed at the bottom of the article.
We make every attempt to keep our information accurate and up-to-date.
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Mesothelioma is an aggressive, deadly cancer with a devastating prognosis. Patients and their caregivers often struggle emotionally and benefit from help in the form of therapy, counseling, and mesothelioma support groups. Financial support is also available to help cover costly treatments and other expenses.
Depression after a Mesothelioma Diagnosis
Mesothelioma is a terrible diagnosis. The majority of cases are incurable because people generally get diagnosed after it has reached the later stages, often after it has already spread to other parts of the body.
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One of the most significant and common consequences of getting a diagnosis of any type of cancer is depression. It’s normal to feel sad over these things, but many patients develop clinical depression. Know the signs of depression:
- Persistent feelings of sadness, hopelessness, and emptiness
- Loss of interest in things you once enjoyed
- Feelings of guilt, shame, and worthlessness
- Physical symptoms like weight loss or gain, insomnia or excessive sleeping, fatigue, and aches and pains
- Difficulty concentrating and trouble making decisions
- Restlessness and agitation
Depression is treatable. Talk to your medical team if you have these symptoms or struggle to cope emotionally with your diagnosis.
Mesothelioma Anxiety
Depression is common after a diagnosis and so is anxiety. Feelings of anxiety, fear, and stress while coping with cancer are normal. Severe anxiety and worry, constantly being on edge, irritable, and angry, and persistent physical symptoms like tense muscles and trembling are not.
You may even develop panic attacks. Panic attacks cause:
- Chest pains
- A racing heartbeat
- Sweating
- Trembling
- Chills
- Tingling sensations in the limbs
- Numbness
- Dizziness
- Shortness of breath
- Choking sensation
- A feeling of being overwhelmed or under attack
As with depression, feelings of anxiety, fear, and panic can and should be addressed. Treatments and support can help relieve these uncomfortable feelings and decrease or eliminate panic attacks. If you struggle to keep anxiety under control, see your doctor about therapy or medication.
Therapy for Mesothelioma Patients
If you or your loved one with mesothelioma is suffering emotionally, professional support can help. Professional therapists who specialize in treating cancer patients can help you process and manage difficult feelings.
Even patients who do not qualify for an official diagnosis of an anxiety disorder or depression can benefit from therapy. In fact, research has shown that therapy for cancer patients improves quality of life and even boosts the immune system and leads to a better overall outcome.
Support Groups
Support groups are powerful tools for coping with the emotional upheaval of a diagnosis of mesothelioma. A support group provides a safe place to talk about your feelings and experiences with people who understand.
To find a support group, start with your medical team or search online for a local group that meets your needs.[1]
A local search is important for finding a support group that you can actually meet with in person. Nationwide and regional online groups can also be helpful and can lead you to more local meetings:
- Mesothelioma Applied Research Foundation (MARF): By registering with MARF for free, mesothelioma patients and caregivers can access their online support groups. Some of these are private Facebook groups, such as Mesothelioma Warriors Survivors and Mesothelioma Caregiver Conversations, but Cure Mesothelioma is a group that is open to anyone. MARF also offers phone support.
- Canadian Mesothelioma Foundation (CMF): Patients and caregivers in Canada can join CMF’s Mesothelioma Patient Support Network. This group offers a searchable database of resources for financial aid, legal help, medical centers, and of course, emotional support groups.
- Cancer Hope Network: The Cancer Hope Network offers a unique type of support service for anyone living with mesothelioma or another type of cancer. Patients or caregivers can contact the group and be matched with support volunteers. The volunteers are former patients, caregivers, or people who lost a loved one to cancer.
- American Cancer Society: The ACS has a searchable database online that patients and caregivers can use to find a local support group. This is a great option for anyone interested in face-to-face cancer support groups.
- Cancer Support Community: This group offers cancer patients and their loved ones a program called MyLifeLine. By joining and registering patients get an online platform to share information with loved ones and to create and gather a supportive group of people online. The Cancer Support Community also links to regional and local face-to-face cancer support groups.
- Cancer Care Lung Cancer Patient Support Group: This organization offers an online support group for patients living with lung cancer. The group is led by an experienced oncology social worker and there is also a group for caregivers of patients with lung cancer.
For further assistance locating a mesothelioma support group in your area, please fill out the contact form on this page for your free Mesothelioma Information Packet. Or call us at 1-800-692-8608 and we can quickly assist you.
Caregivers and Assisted Living
Support for mesothelioma is not just about emotional support. Many patients also need practical and physical help. This kind of support may include a caregiver who comes into the home to help out. Or, it may mean moving into a facility that provides round-the-clock support.
A caregiver is someone hired to come to a patient’s home, but it could also be a family member or friend. Caregivers provide all kinds of support including doing chores around the house. They may also provide physical support to the patient, helping them dress, bathe, and use the bathroom. A medically-trained caregiver can also help with medicines and IV fluids.
When it becomes more difficult for a patient to live in the home, or when the cost is too much, assisted living is a good option for support. These facilities provide all practical needs like meals and laundry, but they can also provide medical and physical support, often twenty-four hours a day.
Caregiver Support
Caregiver needs often get overlooked when patient needs are so great. Many families provide support for their sick loved ones, either out of a sense of obligation and love or to keep costs down. Family caregivers can get burned out easily. They benefit from support too.[2]
Being a caregiver for a sick loved one is demanding. Caregiving without adequate support can cause depression and anxiety, even poor physical health. Caregivers benefit from support groups and from getting help from other friends and family members.
When the caregiver role is shared by more than one person, the burden is lowered for each caregiver. Caregivers need to speak up and talk about the challenges of their role and and the help they need.
In addition to professional therapy and support groups, caregivers benefit from regular self-care: getting enough sleep, exercise, and healthy foods, using stress-reducing techniques like meditation, and taking time off from duties.[2]
Financial Support
Many patients and their caregivers face the stress of financial burdens. Being sick is expensive. Insurance doesn’t always cover all costs of care and working may not be an option.
Financial support is an important part of coping with mesothelioma. Financial assistance and resources for medical bills, travel costs, lost wages, and other expenses are available:
- Charity organizations
- Government assistance
- Assistance for veterans through the VA
- Lawsuits against companies negligent for asbestos exposure
- Asbestos trust funds set up by those companies
Hospice and End-of-Life Decisions
Hospice care is an important type of support for many patients nearing the end of life. Hospice offers emotional, spiritual, social, and medical support as a person enters the final stages of life.[3]
Decisions about end of life matters are difficult, but they can actually help the patient feel better. Knowing what will happen to money, possessions, pets, and any dependents typically gives patients a sense of peace.
People who can provide support in making these difficult decisions include lawyers, doctors, and caregivers. Family members should also be involved to be supportive and to lessen the burden of making such important decisions.
If you are living with a mesothelioma diagnosis, getting support should be a top priority. You need the love and support of family and friends; you need the support of a good medical team and caregiver; you also need the support of all the professionals that can help you make important decisions. If you are the loved one of someone with mesothelioma, you too need support. Don’t forget about your needs throughout this process.
Page Edited by Patient Advocate Dave Foster
Dave has been a mesothelioma Patient Advocate for over 10 years. He consistently attends all major national and international mesothelioma meetings. In doing so, he is able to stay on top of the latest treatments, clinical trials, and research results. He also personally meets with mesothelioma patients and their families and connects them with the best medical specialists and legal representatives available.