It’s important to have honest, open discussions with your cancer care team. You should feel free to ask any question, no matter how small it might seem. Here are some questions you might want to ask:
• What kind of mesothelioma do I have?
• Has my cancer spread beyond where it started?
• What is the stage (extent) of the cancer, and what does that mean?
• Is my cancer likely to be resectable (removable by surgery)?
• Do I need other tests before we can decide on treatment?
• Do I need to see any other types of doctors?
• How much experience do you have treating this type of cancer?
• Should I get a second opinion? Can you recommend someone?
• What are my treatment options?
• What is the goal of treatment?
• What do you recommend and why?
• How quickly do we need to decide on treatment?
• What should I do to be ready for treatment?
• How long will treatment last? What will it be like? Where will it be done?
• What risks or side effects are there to the treatments you suggest?
• How will treatment affect my daily activities?
• What will we do if the treatment doesn’t work or if the cancer recurs?
• What type of follow-up might I need after treatment?
Along with these sample questions, be sure to write down some of your own. For instance, you might want more information about recovery times. Or you may want to ask if you qualify for any clinical trials.
Keep in mind that doctors aren’t the only ones who can give you information. Other health care professionals, such as nurses and social workers, can answer some of your questions. To find out more about speaking with your health care team, see Talking With Your Doctor.
What happens after treatment for malignant mesothelioma?
For some people with mesothelioma, treatment may remove or destroy the cancer. Completing 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. (When cancer comes back after treatment, it is called recurrence.) This is a very common concern in people who have had cancer.
It may take a while before your fears lessen. But it may help to know that many cancer survivors have learned to live with this uncertainty and are leading full lives. Our document Living With Uncertainty: The Fear of Cancer Recurrence talks more about this.
For many people, the mesothelioma may never go away completely. These people may get regular treatments with chemotherapy, radiation therapy, or other therapies to help keep the cancer under control and help relieve symptoms from it. Learning to live with cancer that doesn’t go away can be difficult and very stressful. It has its own type of uncertainty. Our document When Cancer Doesn’t Go Away talks more about this.
If you have completed treatment, your doctors will still want to watch you closely. It’s very important to keep all follow-up appointments. During these visits, your doctors will ask about symptoms, examine you, and may order blood tests (such as the osteopontin or MesoMark tests) or imaging tests such as CT scans or PET scans. There is 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 be extended 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. Don’t hesitate to 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 health. For more on how recurrent cancer is treated, see the section “Treatment of mesothelioma based on the extent of the cancer.” For more general information on dealing with a recurrence, see When Your Cancer Comes Back: Cancer Recurrence.
Seeing a new doctor
At some point after your treatment, you may be seeing a new doctor who doesn’t know anything about your medical history. It’s important to be able to give your new doctor the details of your diagnosis and treatment. Gathering these details soon after treatment may be easier than trying to get them at some point in the future. Make sure you have the following information handy (and always keep copies for yourself):
• A copy of your pathology report(s) from any biopsies or surgeries
• Copies of imaging tests (such as x-rays or CT or MRI scans), which can usually be stored digitally (on a DVD, etc.)
• If you had surgery, a copy of your operative report(s)
• If you stayed in the hospital, a copy of the discharge summary that the doctor wrote when you were sent home
• If you had radiation therapy, a summary of the type and dose of radiation and when and where it was given
• If you had chemotherapy, a list of your drugs, drug doses, and when you took them
• The names and contact information of the doctors who treated your cancer
It’s also 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. For more information about health insurance, see Health Insurance and Financial Assistance for the Person With Cancer.