If you’ve been diagnosed with mesothelioma, you probably want to know all you can about it and your treatment options. Of course your doctor will have information for you, but it can be hard to remember anything said after the word “cancer.”
You’ll also have some decisions to make. You’ll want as much information as possible to make the best decision for you.
So once you’re back home, start your learning journey with the resources below. Click on a tab to see each kind of resource.
Mesothelioma Overviews
Overviews give you a broad outline of everything from symptoms to treatment options. They can help you decide what kinds of information you want more of.
Mesothelioma – malignant: This is a very brief overview to help you get started understanding and thinking about what else you want to know. It has links to more information on symptoms and tests.
Mesothelioma: This page is from the Mayo Clinic and discusses risk factors for getting this cancer along with symptoms, possible treatments, and advice on preparing for your doctor’s visit.
Malignant Mesothelioma Treatment : Despite the name, this page from the National Cancer Institute is a pretty thorough look at the disease. It offers easy to understand information on tests, treatment options for different stages of cancer, and things that affect your chance of recovery.
Malignant Mesothelioma: This detailed guide from the American Cancer Society explains the disease, treatments options, how to talk with your doctor, and what follow-up care to expect.
Organizations Devoted to Mesothelioma
Mesothelioma may be rare compared to many other cancers, but the organizations devoted to learning more about it and helping patients aren’t at all rare. Check out these helpful sites.
Mesothelioma Applied Research Foundation: This non-profit foundation funds research into better understanding and treating this cancer. It also offers information and support for patients and caregivers. There’s also a section especially for veterans to find help.
Pacific Mesothelioma Center: Part of the Pacific Heart, Lung & Blood Institute, this internationally known non-profit organization views malignant pleural mesothelioma as a chronic, treatable disease, not a death sentence. It also promotes lung-sparing therapies.
Mesothelioma Prognosis Network * : This organization offers free mesothelioma information and resources to patients and their families. It also offers help finding local doctors, treatment centers and support groups.
The Mesothelioma Group: This mesothelioma support community offers a wealth of up-to-date information about tests and treatment, compensation mesothelioma patients may qualify for, and more.
MesotheliomaTreatmentCenters.org *: This comprehensive site offers easy to understand information about mesothelioma, its causes, symptoms, and treatment options. It also provides information about asbestos—the cause of this cancer—and how workers in various different jobs may have been exposed. There’s also sections on understanding the legal issues surrounding claims, military & veteran assistance, and listings of mesothelioma treatment centers by state.
The Mesothelioma Center * : The Center provides up-to-date information regarding mesothelioma life expectancy, top doctors around the nation and emerging clinical trials. Find all this information and more at www.asbestos.com.
Mesothelioma Guide *: This advocacy organization helps patients find doctors and treatment options to match their unique needs. The website offers lots of information about mesothelioma, treatment options, etc. You’ll also find a section for patient tools and another for caregivers. The organization provides all services free to patients and their families.
Mesothelioma Research and Clinical Trials
There are a lot of researchers working hard to improve long-term survival and find a cure for mesothelioma. Some of this work requires volunteers to be part of clinical trials. MesotheliomaWeb has a good explanation of clinical trials, how they pick patients, and what the different phases mean.
If you’d like to find out if you qualify for a trial, explore these resources to find trials currently recruiting. Depending on the trial, you’ll probably need your doctor’s help to get enrolled.
Mesothelioma trials on ClinicalTrials.gov: This list of open studies includes ones currently recruiting and ones that have not started recruiting yet. You can also narrow this list by location, gender and age of patient and more.
Mesothelioma Trials on CenterWatch: CenterWatch aims to offer unbiased clinical trial information to help make an informed decision. If you click on “Show Filter,” you can filter the list by gender, age, phase, and location.
Memorial Sloan Kettering Mesothelioma Trials: A much shorter list of trials being run at MSK facilities (all in New York or New Jersey). You can also filter the list by location and trial phase.
NCI-Supported Mesothelioma Trials: These trials are sponsored or supported financially by the Nactional Cancer Institute. You can refine this list by treatment type, location, mesothelioma subtype and more.
Mesothelioma Clinical Trials at Moffitt Cancer Center: This center runs its own trials. Its current trials are not listed on the website, but you can call to see if you may qualify for a trial. The center is located in Florida, but the center has agreements with nearby hotels and housing providers to provide low-cost accommodations during your stay.
Before deciding to be a part of a trial, make sure you understand both the benefits of clinical trials and the risks involved with these trials.
Forums and Support Groups for Mesothelioma
Of course family and friends can offer amazing support. But sometimes you want to connect with people who are or have been through the same thing as you. They really understand how you’re feeling. See if any of these groups click with you.
Mesothelioma Support Groups from the Meso Foundation: The Foundation offers a public Facebook group (Cure Mesothelioma), as well as a private, Mesothelioma Warriors Survivors, group which you must request an invitation to join.
ACOR Mesothelioma Support & Information Online Community: ACOR communities connect patients, family and friends in a supportive environment to discuss their experiences and concerns. As of this writing, the mesothelioma group had 166 members. The groups are private and require log-in so we can’t say how active it is.
Asbestos Disease Awareness Organization & Linda Reinstein’s Social Networks: This page links to a number of different social networks you might find useful. Two of note are the Turning Anger into Action Facebook group, which is public, and the Voices on the Wall Facebook group, with is private and requires an invitation to join.
If these resources aren’t for you, you might find one that works for you on our General Cancer Patient Resources page. Groups (and other resources) listed there are for patients with most any cancer diagnosis.
Other Resources for Mesothelioma
Drugs Approved for Malignant Mesothelioma: The National Cancer Institute links to more information about drugs commonly used to treat mesothelioma.
Asbestos Compensation Fund *: Meosthelioma patients and their families may qualify for compensation from one or more asbestos trust funds. You may also qualify for other financial help dealing with the costs of treatment. Figuring it all out can be confusing, but the Patient Advocates at the Asbestos Compensation Fund specialize in helping you figure it out. They’ll even help you see if you qualify for any clinical trials. These services are free. The site is owned by Patient Support, LLC and sponsored by The Patient Support Law Firm, LLC.
Mesothelioma Treatment and Recovery: Learn more about what to expect during and after treatment. This page is from the Mesothelioma Applied Research Foundation.
Mesothelioma UK: If you’re in the UK, this site offers information on clinical trials, research, legal advice and more. Even if you’re not in the UK, the About Mesothelioma section is easy to understand.
Information For Kids About Mesothelioma
Telling your kids you have cancer—and helping them understand what that means—may be the hardest part of your diagnosis. While we didn’t find any information for kids specific to mesothelioma, we do have a variety of resources on our Cancer Resources for Kids page.
Caregiver Resources
Caring for someone with mesothelioma can be frustrating. Don’t feel guilty if you feel the need for help and support. Getting help for yourself can actually help you do a better job helping your loved one. See if any of these resources are a good fit for you.
The Mesothelioma Group: This mesothelioma support community offers valuable advice on responsibilities of a caregiver, preparing yourself for the responsibility and more. The group even offers phone support (information is near the bottom of the page).
Mesothelioma Support Groups from the Meso Foundation: The foundation offers two private Facebook groups, Caregiver Conversations and Loss Support. The page lists a phone number and email for requesting invitations to these groups.
You may also find some of the resources on our Cancer Caregiver Resources page useful. These resources aren’t specific to mesothelioma. For the most part they are available for caregivers of patients with any cancer diagnosis.
* Sites marked by an asterisk (*) are sponsored by a legal services firm, which may have a financial interest in filing lawsuits or claims on your behalf. Nonetheless, we believe the site does provide valuable information. In fact, lawyers have been important in spreading the word about the dangers of asbestos and the liability of employers who exposed workers to it.
We’re advising you of the connection between the site and a legal firm not because there’s anything wrong with that (there isn’t), but because you have a right to know. Requesting information from the site does not obligate you to use the sponsoring firm’s services even if you do decide you’d like to pursue a settlement.