Living as a Lung Carcinoid Tumor Survivor

For some people with carcinoid tumors, 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 cancer coming back. This is a very common if you've had cancer.

For other people, the lung carcinoid tumors may never go away completely. Some people may get regular treatments with chemotherapy, radiation therapy, or other therapies to try to keep the cancer in check for as long as possible. Learning to live with cancer that does not go away can be difficult and very stressful.

Follow-up care

If you have completed treatment, your doctors will still want to watch you closely. It’s very important to go to all your follow-up appointments. During these visits, your doctors will ask if you are having any problems and may do exams and lab tests or imaging tests to look for signs of cancer or treatment side effects.

Almost any cancer treatment can have side effects. Some might only last for a few days or weeks, but others might last a long time. Some side effects might not even show up until years after you have finished treatment. Your doctor visits are a good time to ask questions and talk about any changes or problems you notice or concerns you have.

It’s important for all lung cancer survivors, to let their health care team know about any new symptoms or problems, because they could be caused by the cancer coming back or by a new disease or second cancer.

Doctor visits and tests

Fore people with no signs of cancer remaining, many doctors recommend follow-up visits (which may include CT scans and blood tests) about every 3 months for the first couple of years after treatment, about every 6 months for the next several years, then at least yearly after 5 years. Some doctors may advise different follow-up schedules.

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 list of potential late or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
• A schedule for other tests you might need, such as tests to look for long-term health effects from your cancer or its treatment
• Suggestions for things you can do that might improve your health, including possibly lowering your chances of the cancer coming back

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 the risk of my cancer progressing or coming back?

If you have (or have had) lung carcinoid, you probably want to know if there are things you can do that might lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements.

Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight is important. We know that these types of changes can have positive effects on your health that can extend beyond your risk of lung carcinoid or other cancers.

Quitting smoking

If you smoke, quitting is important. Although most lung carcinoid tumors are not linked with smoking, some lung carcinoids, like atypical carcinoids, are. Of course, quitting smoking can have other health benefits such as improved healing, lowering your risk of some other cancers, as well as improving your outcome (prognosis) from the cancer. If you need help quitting, talk to your doctor or call the American Cancer Society at 1-800-227-2345.

Diet, nutrition, and dietary supplements

The possible link between diet and lung cancer growing or coming back is much less clear. Some studies have suggested that diets high in fruits and vegetables might help prevent lung cancer from developing in the first place, but this hasn’t been studied in people who already have lung cancer.

Some early studies have suggested that people with early-stage lung cancer who have higher vitamin D levels might have better outcomes, but so far no study has shown that taking extra vitamin D (as a supplement) helps. On the other hand, studies have found that beta carotene supplements may increase the risk of lung cancer in people who smoke.

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 could be harmful.

If the cancer comes back

If cancer does come back at some point, your treatment options will depend on where the cancer is, what treatments you’ve had before, and your health.

For more information on how recurrent cancer is treated, see Treatment of Lung Carcinoid, by Type and Extent of Disease. 

For more general information on recurrence, see Understanding Recurrence.

Second cancers after treatment

People who’ve had lung carcinoid tumor can still get other cancers. Lung cancer survivors are at higher risk for getting another lung cancer, as well as some other types of cancer. Learn more in Second Cancers After Lung Carcinoid Tumors.

Getting emotional support

Some amount of feeling depressed, anxious, or worried is normal when lung carcinoid 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.