Living As a Malignant Mesothelioma Survivor

For some people with mesothelioma, treatment can remove or destroy the cancer. The end of treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about the cancer coming back. This is a very common concern in people who have had cancer.

For many people, mesothelioma may never go away completely. Some people may get regular treatments with chemotherapy, radiation therapy, or other types of treatment to try to keep the cancer in check. Learning to live with cancer that doesn’t go away can be difficult and very stressful.

Life after malignant mesothelioma means returning to some familiar things and also making some new choices.

Follow-up care

If you have completed treatment, your doctors will still want to watch you closely. It’s very important to all your follow-up appointments. During these visits, your doctors will ask about symptoms, examine you, and may order blood tests or imaging tests, such as CT scans or PET scans. There's no widely agreed upon follow-up schedule for people with mesothelioma. Your doctor will most likely want to see you fairly often (at least every few months or so) at first. The time between visits may get longer if there are no problems.

Follow-up is needed to check for signs of cancer recurrence or spread, as well as possible side effects of certain treatments. This is a good time for you to ask your health care team any questions you might have and to discuss any concerns.

Almost any cancer treatment can have side effects. Some can last for weeks or months, but others can be permanent. Tell your cancer care team about any symptoms or side effects that bother you so they can help you manage them.

If the cancer does come back, further treatment will depend on where the cancer is, what treatments you’ve had before, and your overall health. For more on how recurrent cancer is treated, see Treatment of Mesothelioma Based on the Extent of the Cancer. For more general information on dealing with a recurrence, see Understanding Recurrence.

Ask your doctor for a survivorship care plan

Talk with your doctor about developing a survivorship care plan for you. This plan might include: 

• A suggested schedule for follow-up exams and tests
• A schedule for other tests you might need in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from your cancer or its treatment
• A list of possible late- or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
• Diet and physical activity suggestions
• Reminders to keep your appointments with your primary care provider (PCP), who will monitor your general health care 

Keeping health insurance and copies of your medical records

Even after treatment, it’s very important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.

At some point after your cancer treatment, you might find yourself seeing a new doctor who doesn’t know about your medical history. It’s important to keep copies of your medical records to give your new doctor the details of your diagnosis and treatment. Learn more in Keeping Copies of Important Medical Records.

Can I lower my risk of mesothelioma progressing or coming back?

If you have (or have had) mesothelioma, you probably want to know if there are things you can do that might lower your risk that it will or come back, such as exercising, eating a certain type of diet, or taking nutritional supplements. Unfortunately, it’s not yet clear if there are things you can do that will help.

Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. Still, we do know that these types of changes can have positive effects on your health that can extend beyond your risk of mesothelioma or other cancers.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of mesothelioma progressing or coming back. This doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.

Dietary supplements are not regulated like medicines in the United States – they do not have to be proven effective (or even safe) before being sold, although there are limits on what they’re allowed to claim they can do. If you’re thinking about taking any type of nutritional supplement, talk to your health care team. They can help you decide which ones you can use safely while avoiding those that might be harmful.

If the cancer comes back

If mesothelioma does recur at some point, your treatment options will depend on where the cancer is located, what treatments you’ve had before, and your health. For more information on how recurrent cancer is treated, see Treatment of Mesothelioma By the Extent of the Cancer.

For more general information on recurrence, you may also want to see Understanding Recurrence.

Getting emotional support

Some amount of feeling depressed, anxious, or worried is normal when cancer is a part of your life. Some people are affected more than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups, professional counselors, or others. Learn more in Life After Cancer.