Living as a Cancer of Unknown Primary Survivor

For some people with cancer of unknown primary (CUP), 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 it’s hard not to worry about cancer coming back. This is very common if you’ve had cancer.

For other people, the cancer might never go away completely. Some people may get regular treatment with chemotherapy or targeted therapy or other treatments to try and help keep the cancer in check. Learning to live with cancer that does not go away can be difficult and very stressful.

Life after CUP means returning to some familiar things and making some new choices.

Follow-up care

If you have completed treatment, your doctors will still want to watch you closely. It is very important to go to all of your follow-up appointments. During these visits, your doctors will ask questions about any problems you are having and may examine you and order lab or imaging tests to look for signs of cancer or treatment side effects. Almost any cancer treatment can have side effects. Some last for a few weeks to months, but others can last the rest of your life. This is the time for you to talk to your cancer care team about any changes or problems you notice and any questions or concerns you have.

Most doctors recommend careful follow-up, with a physical exam and review of symptoms every 3 to 6 months for the first few years, then at least yearly after that. Lab tests might also be done. Scans are not usually needed at each visit, but should be done if there are any suspicious symptoms or physical findings.

If you have had surgery, your health care team may suggest that you meet with a nutritionist, who can help you adjust to changes in your eating habits.

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

Nutrition

Eating right can be hard for anyone, and may have gotten tougher during cancer treatment. If you have lost or are losing weight, or if you are having trouble eating, do the best you can. Eat what appeals to you. Eat what you can, when you can. You might find it helps to eat small portions every 2 to 3 hours until you feel better. Now is not the time to restrict your diet. Try to keep in mind that these problems usually improve over time. Your cancer team may refer you to a dietitian, an expert in nutrition who can give you ideas on how to fight some of the side effects of your treatment.

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 my cancer progressing or coming back?

If you have (or have had) cancer of unknown primary, 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. Unfortunately, it’s not yet clear if there are things you can do that will help. However, we do know that there are certain changes that can have positive effects on your health that can extend beyond your risk of cancer.

Tobacco use has clearly been linked to some cancers, so not smoking might help reduce your risk. We don’t know for certain if this will help, but we do know that it can help improve your appetite and overall health. It can also reduce the chance of developing other types of cancer. If you want to quit smoking and need help, call the American Cancer Society at 1-800-227-2345. You can also learn more in How to Quit Smoking.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of cancer 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 the cancer 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 general information on recurrence, you may also want to see Understanding Recurrence.

Could I get a second cancer after treatment? 

People who’ve had a CUP can still get other cancers. In fact, CUP survivors are at higher risk for getting some other types of cancer. Learn more in Second Cancers After Cancer of Unknown Primary . 

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.