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 American Cancer Society document, Living with Uncertainty: The Fear of Cancer Recurrence, available at 1-800-227-2345.

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 section "How is Hodgkin disease treated?" For more general information on dealing with a recurrence, you may also want to see the American Cancer Society document, When Your Cancer Comes Back: Cancer Recurrence. You can get this document by calling 1-800-227-2345.

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 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 summary of the type and dose of radiation and when and where it was given
• 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 medical 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.

Lifestyle changes to consider during and after treatment

Having cancer and dealing with treatment can be time-consuming and emotionally draining, but it can also be a time to look at your life in new ways. Maybe you are thinking about how to improve your health over the long term. Some people even begin this process during cancer treatment.

Make healthier choices

Think about your life before you learned you had cancer. Were there things you did that might have made you less healthy? Maybe you drank too much alcohol, or ate more than you needed, or smoked, or didn't exercise very often. Emotionally, maybe you kept your feelings bottled up, or maybe you let stressful situations go on too long.

Now is not the time to feel guilty or to blame yourself. However, you can start making changes today that can have positive effects for the rest of your life. Not only will you feel better but you will also be healthier. What better time than now to take advantage of the motivation you have as a result of going through a life-changing experience like having cancer?

You can start by working on those things that you feel most concerned about. Get help with those that are harder for you. For instance, if you are thinking about quitting smoking and need help, call the American Cancer Society's Quitline™ tobacco cessation program at 1-800-227-2345.

Diet and nutrition

Eating right can be a challenge for anyone, but it can get even tougher during and after cancer treatment. For instance, treatment often may change your sense of taste. Nausea can be a problem. You may lose your appetite for a while and lose weight when you don’t want to. On the other hand, some people gain weight even without eating more. This can be frustrating, too.

If you are losing weight or have taste problems during treatment, do the best you can with eating and remember that these problems usually improve over time. You may want to ask your cancer team for a referral to a dietitian, an expert in nutrition who can give you ideas on how to fight some of the side effects of your treatment. You may also find it helps to eat small portions every 2 to 3 hours until you feel better and can go back to a more normal schedule.

One of the best things you can do after treatment is to put healthy eating habits into place. You will be surprised at the long-term benefits of some simple changes, like increasing the variety of healthy foods you eat. Try to eat 5 or more servings of vegetables and fruits each day. Choose whole grain foods instead of white flour and sugars. Try to limit meats that are high in fat. Cut back on processed meats like hot dogs, bologna, and bacon. Get rid of them altogether if you can. If you drink alcohol, limit yourself to 1 or 2 drinks a day at the most. And don't forget to get some type of regular exercise. The combination of a good diet and regular exercise will help you maintain a healthy weight and keep you feeling more energetic.

Rest, fatigue, work, and exercise

Fatigue is a very common symptom in people being treated for cancer. This is often not an ordinary type of tiredness but a "bone-weary" exhaustion that doesn't get better with rest. For some, this fatigue lasts a long time after treatment, and can discourage them from physical activity.

However, exercise can actually help you reduce fatigue. Studies have shown that patients who follow an exercise program tailored to their personal needs feel physically and emotionally improved and can cope better.

If you are ill and need to be on bed rest during treatment, it is normal to expect your fitness, endurance, and muscle strength to decline some. Physical therapy can help you maintain strength and range of motion in your muscles, which can help fight fatigue and the sense of depression that sometimes comes with feeling so tired.

Any program of physical activity should fit your own situation. An older person who has never exercised will not be able to take on the same amount of exercise as a 20-year-old who plays tennis 3 times a week. If you haven’t exercised in a few years but can still get around, you may want to think about taking short walks.

Talk with your health care team before starting, and get their opinion about your exercise plans. Then, try to get an exercise buddy so that you're not doing it alone. Having family or friends involved when starting a new exercise program can give you that extra boost of support to keep you going when the push just isn't there.

If you are very tired, though, you will need to balance activity with rest. It is okay to rest when you need to. It is really hard for some people to allow themselves to do that when they are used to working all day or taking care of a household.

Exercise can improve your physical and emotional health.

• It improves your cardiovascular (heart and circulation) fitness.
• It strengthens your muscles.
• It reduces fatigue.
• It lowers anxiety and depression.
• It makes you feel generally happier.
• It helps you feel better about yourself.

And long term, we know that exercise plays a role in preventing some cancers. The American Cancer Society, in its guidelines on physical activity for cancer prevention, recommends that adults take part in at least 1 physical activity for 30 minutes or more on 5 days or more of the week. Children and teens are encouraged to try for at least 60 minutes a day of energetic physical activity on at least 5 days a week.

How about your emotional health?

Once your treatment ends, you may find yourself overwhelmed by emotions. This happens to a lot of people. You may have been going through so much during treatment that you could only focus on getting through your treatment.

Now you may find that you think about the potential of your own death, or the effect of your cancer on your family, friends, and career. You may also begin to re-evaluate your relationship with your spouse or partner. Unexpected issues may also cause concern -- for instance, as you become healthier and have fewer doctor visits, you will see your health care team less often. That can be a source of anxiety for some.

This is an ideal time to seek out emotional and social support. You need people you can turn to for strength and comfort. Support can come in many forms: family, friends, cancer support groups, church or spiritual groups, online support communities, or individual counselors.

Almost everyone who has been through cancer can benefit from getting some type of support. What's best for you depends on your situation and personality. Some people feel safe in peer-support groups or education groups. Others would rather talk in an informal setting, such as church. Others may feel more at ease talking one-on-one with a trusted friend or counselor. Whatever your source of strength or comfort, make sure you have a place to go with your concerns.

The cancer journey can feel very lonely. It is not necessary or realistic to go it all by yourself. And your friends and family may feel shut out if you decide not to include them. Let them in and let in anyone else who you feel may help. If you aren't sure who can help, call your American Cancer Society at 1-800-227-2345 and we can put you in touch with an appropriate group or resource.

You can't change the fact that you have had cancer. What you can change is how you live the rest of your life -- making healthy choices and feeling as well as possible, physically and emotionally.

What happens if treatment is no longer working?

If cancer continues to grow after one kind of treatment, or if it returns, it is often possible to try another treatment plan that might still cure the cancer, or at least shrink the tumors enough to help you live longer and feel better. On the other hand, when a person has received several different medical treatments and the cancer has not been cured, over time the cancer tends to become resistant to all treatment. At this time it's important to weigh the possible limited benefit of a new treatment against the possible downsides, including continued doctor visits and treatment side effects.

Everyone has his or her own way of looking at this. Some people may want to continue treatment for as long as possible, while others may want to focus on remaining comfortable during their limited time left.

This is likely to be the most difficult time in your battle with cancer -- when you have tried everything medically within reason and it's just not working anymore. Although your doctor may offer you new treatment, you need to consider that at some point, continuing treatment is not likely to improve your health or change your prognosis or survival.

If you want to continue treatment to fight your cancer as long as you can, you still need to consider the odds of more treatment having any benefit. In many cases, your doctor can estimate the response rate for the treatment you are considering. Some people are tempted to try more chemotherapy or radiation, for example, even when their doctors say that the odds of benefit are less than 1%. In this situation, you need to think about and understand your reasons for choosing this plan.

No matter what you decide to do, it is important that you be as comfortable as possible. Make sure you are asking for and getting treatment for any symptoms you might have, such as pain. This type of treatment is called palliative treatment.

Palliative treatment helps relieve these symptoms, but is not expected to cure the disease; its main purpose is to improve your quality of life. Sometimes, the treatments you get to control your symptoms are similar to the treatments used to treat cancer. For example, radiation therapy might be given to help relieve bone pain from bone metastasis. Or chemotherapy might be given to help shrink a tumor and keep it from causing a bowel obstruction. But this is not the same as receiving treatment to try to cure the cancer.

At some point, you may benefit from hospice care. Most of the time, this can be given at home. Your cancer may be causing symptoms or problems that need attention, and hospice focuses on your comfort. You should know that receiving hospice care doesn't mean you can't have treatment for the problems caused by your cancer or other health conditions. It just means that the focus of your care is on living life as fully as possible and feeling as well as you can at this difficult stage of your cancer.

Remember also that maintaining hope is important. Your hope for a cure may not be as bright, but there is still hope for good times with family and friends -- times that are filled with happiness and meaning. In a way, pausing at this time in your cancer treatment is an opportunity to refocus on the most important things in your life. This is the time to do some things you've always wanted to do and to stop doing the things you no longer want to do.

Last Medical Review: 07/21/2009
Last Revised: 07/21/2009