Completing treatment can be both stressful and exciting. You will be relieved to finish treatment, yet it is hard not to worry about cancer coming back. (When cancer returns, it is called recurrence.) This is a very common concern among those who have had cancer.

It may take a while before your confidence in your own recovery begins to feel real and your fears are somewhat relieved. You can learn more about what to look for and how to learn to live with the possibility of cancer coming back in the document, Living with Uncertainty: The Fear of Cancer Recurrence.

Follow-up care

After treatment is over, it is very important to keep all follow-up appointments. You or your child will need follow-up care for many years after treatment for Hodgkin disease.

During these visits, the doctor will ask about symptoms, do physical exams, and may order blood tests or imaging tests such as CT scans or x-rays. Doctor visits are usually recommended every few months for the first several years after treatment. Gradually, the length of time between visits can be increased, but even after 5 years they should be done at least yearly. Follow-up is needed to check for cancer recurrence or spread, as well as possible side effects of certain treatments. This is the time for you to ask your health care team any questions you need answered and to discuss any concerns you might have.

If the Hodgkin disease does recur at some point, further treatment will depend on what treatments you've had before, how long it's been since treatment, and your health. For more information, see the How is Hodgkin disease treated? For more general information on dealing with a recurrence, you may also want to see the document, When Your Cancer Comes Back: Cancer Recurrence.

Watching for long-term side effects

Each type of treatment for Hodgkin disease has side effects that may last for a few months. Some side effects, like loss of fertility, may be permanent. Because so many people are living for a long time after their treatment, we are now learning about serious side effects that happen years after treatment is over.

Second cancers: One of the most serious side effects of Hodgkin disease treatment is developing a second cancer. For example, acute myelogenous leukemia (AML) is a serious type of cancer that can develop in a small portion of patients after receiving certain types of treatment for Hodgkin disease. This usually occurs in the first few years after treatment and is seen more often in older people.

Older drug combinations, such as the MOPP regimen, may have increased this risk more than the combinations now in use, such as ABVD. Radiation may also add to this risk slightly.

Although radiation alone does not increase the risk for leukemia much, it can raise the risk of other forms of cancer in the part of the body that received the radiation.

Women who receive chest radiation before they are 30 years old have a much higher risk of breast cancer. They should be especially careful about following American Cancer Society recommendations for early detection of breast cancer and should talk to their doctor about starting mammogram screening at an early age.

Both men and women receiving chest radiation have a higher chance of developing lung cancer, mesothelioma (a cancer of the lining of the lungs), and thyroid cancer. The chance of getting lung cancer is much higher in smokers, so not smoking is especially important among survivors of Hodgkin disease. Although there are no accepted screening tests for these cancers, follow-up physical exams, blood tests for thyroid problems, and chest x-rays as suggested by your doctor may be helpful.

Cancers of muscle or bone, called sarcomas, can also develop in the radiated area. Likewise, digestive tract cancers such as colon cancer are also more likely.

Another type of cancer, non-Hodgkin lymphoma, develops in a small number of patients with Hodgkin disease. It is thought that this risk is due mostly to the disease itself and not the treatment.

Fertility issues: A possible long-term effect of chemotherapy and radiation therapy, especially important in younger patients, is reduced or lost fertility. For example, males lose their ability to produce sperm if they are treated with nitrogen mustard (the M in the MOPP chemotherapy regimen). Sperm production might return but usually does not. If the patient is old enough and is scheduled to receive drugs that cause sterility, sperm banking should be considered before chemotherapy is started.

Likewise, women may stop ovulating and menstruating with chemotherapy. This may or may not return to normal. Radiation given to the ovaries will cause infertility unless the ovaries are surgically placed outside the radiation field. Moving the ovaries does not affect cure rates because Hodgkin disease almost never spreads to the ovaries.

Infections: For unknown reasons, the immune system of people with Hodgkin disease does not work properly. Treatments such as radiation, chemotherapy, and surgical removal of the spleen (splenectomy) can add to this problem. Splenectomy was once done commonly but now is a rare procedure for people with Hodgkin disease. Patients who have their spleen removed should be immunized against certain bacteria.

All adults should keep up with their flu shots. Keeping up with vaccinations and careful, prompt treatment of infections are very important.

Thyroid problems: The thyroid gland may also be affected by treatment. Radiation to the thyroid gland may cause it to make less thyroid hormone. People with this condition, known as hypothyroidism, may need to take thyroid medication. In people who received radiation to the neck or upper chest, thyroid function should be tested at least yearly.

Heart disease and strokes: Patients who have had radiation to the chest have a higher than normal risk of developing heart disease and heart attacks. This has become less of a problem with more modern techniques of radiation treatment. It is important to avoid smoking and maintain a healthy diet to help avoid this problem. Some chemotherapy drugs such as doxorubicin (Adriamycin) and mitoxantrone can also cause heart damage and increase radiation therapy damage.

Radiation to the neck increases the chance of stroke because of damage done to the blood vessels in the neck that supply the brain. Smoking and high blood pressure also increase the risk of stroke. Once again it is important to avoid smoking. It is also important to have regular check-ups with your doctor and have any high blood pressure treated.

Seeing a new doctor

At some point after your cancer diagnosis and treatment, you may find yourself in the office of a new doctor. Your original doctor may have moved or retired, or you may have moved or changed doctors for some reason. It is important that you be able to give your new doctor the exact details of your diagnosis and treatment. Make sure you have the following information handy:

• A copy of your Survivorship Care Plan
• A copy of your pathology report(s) from any biopsies or surgeries
• If you had surgery, a copy of your operative report(s)
• If you were hospitalized, a copy of the discharge summary that doctors must prepare when patients are sent home
• If you had radiation therapy, a copy of the treatment summary
• If you had chemotherapy or other medicines, a list of your drugs, drug doses, and when you took them

It is also important to keep your health insurance. Even though no one wants to think of their cancer coming back, it is always a possibility. If it happens, the last thing you want to have to worry about is paying for treatment.

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