For many people, in the immediate aftershock of a diagnosis of cancer, the thought of joining a support group doesn’t even appear on the emotional radar screen. For those with a diagnosis of a rare form of cancer, such as malignant mesothelioma, there is so much new information to cope with that it may not occur to them that a cancer support group could offer much. But the truth is, mesothelioma support groups can be a great source of support and of information.
Mesothelioma is an aggressive form of cancer caused by exposure to asbestos that usually develops in the membranes surrounding the lungs. This is known as pleural mesothelioma, and there are other types, such as pericardial mesothelioma (in the membranes around the heart) and peritoneal mesothelioma (in the membranes surrounding the abdominal organs). Mesothelioma treatment options vary depending on how advanced the disease is, the age of the patient, the patient’s general health, and many other factors.
Treatment may involve surgery, chemotherapy, or radiation therapy. Newer treatments for mesothelioma include biological therapies that invoke the resources of the patient’s own immune system. One reason mesothelioma can be difficult to treat is that it often takes years – decades even – between the time a person is exposed to asbestos and the time a person develops mesothelioma. Patient information is widely available on the internet, as are online mesothelioma support groups and referrals to in-person support groups.
Mesothelioma research is a field that is growing, because the number of cases of mesothelioma is expected to rise in the coming years due to the lag time between exposure to asbestos and the development of symptoms of mesothelioma. There are numerous clinical trials going on at all times. Some of them are for newly diagnosed patients, and some are specifically for patients who have tried other treatments. Mesothelioma support groups can be a great source of information for finding clinical trials and for coping with a diagnosis of mesothelioma.
For the person or people who care for a person with mesothelioma, support is vital as well. So much is expected of caregivers, and yet their needs may remain unmet for months or years as family and friends give their support and encouragement to the patient. The role of caregiver is extremely demanding, particularly on those who have their own careers, or who have children to raise. Some mesothelioma groups offer resources and meetings specifically for these people, who often work very hard in silence, afraid to speak up for themselves for fear of being perceived as selfish. Support groups can be of tremendous help to mesothelioma caregivers.
It is hard to pin down what takes place in a “typical” support group session. Some are facilitated by psychologists or social workers, and each group evolves and changes over time. The identification of issues that concern mesothelioma patients is a very important function of mesothelioma support groups. After all, if a person with malignant mesothelioma isn’t getting much from a support group, there is very little reason to continue in that particular group. The good news is that even with a relatively rare cancer like mesothelioma, there are many support groups and online discussion groups, so any mesothelioma patient who is reaching out for support should be able to find a support group that fits their needs.
The common thread among good cancer support groups is the availability of emotional support and useful information. For many people, sharing their own mesothelioma stories and receiving support from people who know what it is like can be a great source of emotional strength. But it is also important in a mesothelioma support group that everyone’s experience with malignant mesothelioma is unique, and that their experiences are acknowledged and respected.
The treatment of mesothelioma is changing, and in many cases even experienced oncologists find it hard to keep up with the latest research in mesothelioma treatment. Fortunately, there are not only clinical trials, but also cancer centers that employ oncologists who have specific expertise in the diagnosis and treatment of malignant mesothelioma. Support groups can be a great way to find out where to find the doctors who have the most experience in treating mesothelioma, and how to go about enrolling in relevant clinical trials.
Mesothelioma family support is extremely important too, and there are mesothelioma support groups that are specifically designed for family members and caregivers of people with cancer. Family members – particularly care givers – go through huge changes after the loved one’s diagnosis of malignant mesothelioma, and they need support because they can suffer from feelings of frustration, guilt, and burn-out if their unique needs go unmet.
The role of the cancer patient’s family and / or caregiver is changing rapidly. Hospital stays are now much shorter than they used to be. While this is good in many ways, it puts extra responsibility on the shoulders of family members and others who care for a person with malignant mesothelioma. Caregivers may be charged with changing dressings and administering medications in addition to their usual responsibilities of jobs, housework, and other commitments. While everyone calls to see how the mesothelioma patient is doing, it is just as important that friends ask how the caregiver and family members are doing. The last thing a caregiver needs is a feeling of guilt over wanting a break, being the healthy one, or just feeling angry and exhausted at the situation.
The National Family Caregivers Association, which can be reached online at http://www.nfcacares.org, or by phone in the US at 1-800-896-3650, is an organization devoted to supporting, educating, and speaking up for those who care for a loved one with a disability or serious illness. Caregiver.com is another online resource that can help people find mesothelioma family support in the US.
Most mesothelioma support groups are free, but it is important for mesothelioma patients to know that a particular support group is legitimate. And there is nothing wrong with attending a support group for a time and realizing that it isn’t the right one. Each cancer support group has its own group dynamic, and it is important that the mesothelioma patient or caregiver feels that the time is well spent and that there are benefits to attending.
And it is perfectly OK for a mesothelioma patient to decide that mesothelioma support groups aren’t for them. They do not work for everybody. But it is important for the patient to find support, and there are alternatives to traditional support groups, such as online discussions and even radio programs devoted to support for cancer patients and their families. While support groups can be valuable for exchanging information about clinical trials, treatment options and so forth, support groups are not the only repositories of such information, and other options may prove more valuable for some mesothelioma patients.
The internet has changed support groups, in good ways and in bad ways. Many people feel less threatened joining online mesothelioma support groups than by going to an in-person support group. Just like in the offline world, there are internet support groups that are healing, helpful resources, but there are also “support groups” with ulterior motives, often related to selling questionable “cures” or treatments or novel theories of how to treat cancer. In some cases, a group’s “support” begins and ends with the possibility of selling something to a person who is vulnerable and who is being bombarded with very complex information. It is important to stay away from these sites altogether.
Following, in no particular order, are just a few of the online resources available to mesothelioma patients and their families. In many cases these websites offer information about in-person support groups for those who are interested.
http://www.mesolink.org/mesothelioma-hope/ is a website devoted to mesothelioma stories of hope, including mesothelioma survivor stories. Though mesothelioma only strikes 3,000 people each year, there are many people who know what it’s like to go through the diagnosis and treatments for the disease.
http://www.resource4mesothelioma.com/topics/mesotheliomasupportgroups.html helps mesothelioma patients and families find support groups and other sources of support for fighting the disease.
http://www.ontopofcancer.org/mesothelioma_support_group.php has a list of resources for mesothelioma patients, including online and in-person support groups, mesothelioma family support, and survivor stories. There are also phone help-lines, resources for matching mesothelioma patients with survivors of mesothelioma, and an online chat room.
http://www.dailystrength.org/c/Mesothelioma/support-group is a discussion and message board site for those diagnosed with mesothelioma and their loved ones.
http://mesotheliomacancerportal.org/mesothelioma-support-groups.html is starting a support site for mesothelioma patients, survivors, and families that specifically plans to keep the site separate and apart from the many mesothelioma sites run by mesothelioma lawyers.
A mesothelioma diagnosis can be one of the most significant events in a person’s life – and in the lives of his or her loved ones. Because mesothelioma is a rare form of cancer, it does not get the national attention that more common forms of cancer get. Yet a person with mesothelioma is bombarded with information related to the progress of the disease, treatment options, and prognosis. The diagnosis and the aftermath are difficult times, and it is important that the mesothelioma patient and his or her loved ones feel that they can reach out and find support from those who have some idea of what they are going through.
A person who has been diagnosed with malignant mesothelioma or other asbestos related cancer may feel isolated because there are a lot of people who have never even heard of it, and it’s a very serious disease. Taking advantage of national and local mesothelioma support groups ( and general cancer support groups) can be a source of emotional strength, a source of valuable information, and even the source of lifelong friendships. And many support groups provide resources or meetings specifically for caregivers and family members of the mesothelioma patient. Mesothelioma family support is every bit as useful as mesothelioma support groups for patients.