The first step will be to educate yourself about the disease, its causes, symptoms, and treatments, so that you know what to expect. The information you find may not be encouraging, but even being prepared for what is to come can help alleviate the stress of being diagnosed with a serious disease.
For a family suffering from the shock of a recent diagnosis, there are many resources available online and in specialized Mesothelioma centers. A number are listed here, however this should not be treated as an exhaustive list or as a list of higher priority or better reputation resources.
Cause, Symptoms, and Diagnosis of Mesothelioma
Mesothelioma is a cancer that grows on the delicate tissues that surround organs and body cavities. Pleural Mesothelioma effects the membrane that surrounds the lungs, or the pleura. When tumors are present in the lining of the abdomen, it is called Peritoneal Mesothelioma. Mesothelioma can also occur in the lining of the heart or the testes.
The cause of Mesothelioma is almost always asbestos poisoning. Asbestos is a group of silicate minerals that form a fine, airborne, fibrous dust when processed or used. The particles have an adverse effect on anyone exposed to them, even if exposure happens once for as little as 1-3 months. Most people diagnosed with Mesothelioma have worked with or around asbestos, however their families are also at risk if they come home with the dust on their clothes or hair.
Mesothelioma is a malignant form of cancer, which means it can and probably will spread. Although it is possible to remove cancerous cells before they spread, Mesothelioma is a cancer with a very long incubation period and the likelihood of catching it early enough is very low. Diagnosis rarely occurs within 15 years of exposure to asbestos, meaning the cancerous cells have a lot of time to grow and spread.
Diagnosis can be difficult, as the symptoms are not easy to recognize as Mesothelioma symptoms. Shortness of breath, cough, tightness in the chest, chest pain, blood in sputum (coughed up spit), and digestive disorders are all reported as symptoms of Mesothelioma. Usually doctors will not assume Mesothelioma is even a possibility unless they know of prior exposure to asbestos.
Treatment Options
Often the worst part of a diagnosis of Mesothelioma is finding out about treatment. Although similar to most cancer treatments, Mesothelioma tends not to respond well, and treatments rarely extend life beyond an additional few months. Every patient is different, and although some patients may not be eligible for surgery due to unfavorable prognostic factors, such as age, advanced spread of the tumors, or other diseases, there are many patients who are given a range of therapies to help prolong life.
The most successful treatments involve a combination of medical and complementary therapies. Medical intervention usually involves surgery, chemotherapy, and radiation. Surgery removes the entire mesothelium, not just the tumor. This is because most often there are cancerous cells throughout the tissues. Chemotherapy and radiation can stop the growth of any new cancer cells and kills cancer cells that are not removed during surgery.
The Importance of Support
Being diagnosed with a life threatening disease is never pleasant. There is very little that anyone can say to make things seem better than they are, and often it is as traumatic for loved ones. Everyone has a different way of dealing with pain, suffering, and disease, and even the grieving process usually begins upon diagnosis. This can be a very, very hard time.
There is comfort in knowing that other people are experiencing the same thing as you and your family. Shared stories and opportunities to both listen and speak about the trials of treatment and advancement of the disease can help everyone to better understand and deal with the pain. Because a network of people like you can be so helpful, you will find that many opportunities exist for connecting with Mesothelioma sufferers and their families.
Mesothelioma is relatively rare, and often hits an entire community hard due to exposure to asbestos. People have been suffering from Mesothelioma for over 100 years, and probably longer, so trust that others before you have seen what you are seeing and may be able to offer guidance, help, and comfort.
Support Networks and Resources
Below is a list of available resources, separated by type. A number of centers are located around the world and in the United States, where treatment is specific to Mesothelioma sufferers. They provide counseling and other tools for recovery, as well as treatment by skilled specialists. Many doctors have not had to treat Mesothelioma because it is so rare, so going to a specialist may be your best option.
There is so much information on the internet that to list it all would be overwhelming. Be sure to check information from the internet against other information – it may be correct, but it also may not apply to your case. In some instances, people create incorrect content in the hopes of soliciting money in exchange for comforting but ineffective products or advice. Contact your doctor and print out any materials you would like to discuss with your doctor to verify facts or hear more about treatment options.
