Moving on after treatment for Hodgkin disease
For many people with Hodgkin disease, 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 lymphoma growing or 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 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 chance of cancer coming back in Living With Uncertainty: The Fear of Cancer Recurrence.
For some people, the lymphoma may never go away completely. These people may get regular treatments with chemo, radiation, or other treatments to help keep the lymphoma in check for as long as possible. Learning to live with lymphoma as more of a chronic disease can be hard and very stressful. It has its own type of uncertainty.
If you (or your child) have completed treatment, your doctors will still want to watch you closely with frequent office visits. During these visits, your doctors will ask about symptoms, do physical exams, and may order blood tests or imaging tests (like CT scans or x-rays). Doctor visits are usually needed every few months for the first several years after treatment. Over time, the time between visits can be increased, but even after 5 years they should be done at least once a year.
Follow-up is needed to watch for treatment side effects and to check for cancer that has come back or spread. This is the time for you to ask your health care team questions and discuss any concerns you might have.
Should your cancer come back, further treatment will depend on what treatments you’ve had before, how long it’s been since you were first treated, and your overall health. Our document When Your Cancer Comes Back: Cancer Recurrence has general information on dealing with a recurrence.
It is also important to keep health insurance. While you hope your cancer won’t come back, it could happen. If it does, you don’t want to have to worry about paying for treatment.
Watching for long-term side effects
Each type of treatment for Hodgkin disease has side effects that could last for months or longer. Some can be permanent. Because so many people now live for a long time after their treatment, watching for these serious side effects is very important.
Second cancers: One of the most serious side effects of Hodgkin disease treatment is the chance of the person having a second cancer. A type of leukemia called AML (acute myeloid leukemia) occurs in a small portion of people who get certain types of treatment for Hodgkin disease. If this happens, it’s usually in the first few years after treatment. It is seen more often in older people.
Although radiation treatment alone does not increase the risk for leukemia much, it can raise the risk of other cancers. Young women (under age 30) who have radiation to the chest have a much higher chance of getting breast cancer. These women should be careful about following the guidelines for finding breast cancer early. They should talk to their doctors about starting screening tests at an early age.
Both men and women treated with chest radiation have a higher chance of getting lung cancer, mesothelioma (a cancer of the lining of the lung), and thyroid cancer. Follow-up exams, blood tests, and chest scans may be helpful. The chance of getting lung cancer is much higher in smokers, so not smoking is really important for people who have had Hodgkin disease.
Cancers of the muscle or bone, called sarcomas, can also begin in the area that was treated with radiation. Digestive tract cancers such as colon cancer are also more likely. Another type of cancer, non-Hodgkin lymphoma, happens 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 problems: A possible long-term effect of chemo and radiation treatment is having trouble getting pregnant or not being able to have children. Males can stop making sperm if they are treated with certain drugs. Sperm making might return but often does not. If the patient is old enough and is scheduled to get drugs that affect fertility, sperm banking might be an option before chemo is started.
Likewise, women may stop ovulating and having periods with chemotherapy. Radiation treatment near the ovaries will cause a woman to become sterile unless the ovaries are moved outside of the radiation field with surgery.
Infections: For unknown reasons, the immune system of people with Hodgkin disease does not work like it should. The treatment of Hodgkin disease can add to this problem. All people who have had Hodgkin disease should keep up with their vaccinations, including flu shots, and make sure that they get treatment for any infections promptly.
Thyroid problems: Radiation to the chest or neck to treat Hodgkin disease might affect the thyroid gland, and could keep it from making enough thyroid hormone. Patients may then need to take thyroid medicine. Thyroid function should be checked with blood tests at least once a year.
Heart disease and strokes: Radiation to the chest can injure the arteries that carry blood to the heart muscle. In the past, people who have had radiation to the chest had a higher rate of heart attacks. With more modern treatment this has become less of a problem, but it’s still important that survivors not smoke and that they follow a healthy diet.
Some chemo drugs can also cause heart damage. Your doctor may advise you to have tests to check your heart function a few years after your treatment.
Radiation to the neck increases the chance of stroke because it can damage the blood vessels in the neck that supply the brain. 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.
Lung damage: The chemo drug bleomycin can damage the lungs, as can radiation to the chest. This can lead to problems like shortness of breath, which might not show up until years after treatment. Smoking can also really damage the lungs, so it is important that people who have had these treatments not smoke.
Special concerns for children who have had Hodgkin disease
Just as the treatment of childhood Hodgkin disease needs a very special approach, so does follow-up and watching for late effects of treatment. Careful follow-up after treatment is very important.
Along with physical side effects (including those listed above), children who have had cancer may have emotional or psychological issues that need to be addressed. They also may have some problems with normal things like activities and school work. There are often special support programs and services to help children after cancer treatment.
To help increase awareness of late effects and improve follow-up care of childhood cancer survivors throughout their lives, the Children’s Oncology Group (COG) has long-term follow-up guidelines for survivors of childhood cancers. These guidelines can help you know what to watch for, what types of health screening should be done, and how late effects may be treated.
It is very important to discuss possible long-term complications with your child’s health care team, and to make sure there is a plan in place to watch for these problems and treat them, if needed. To learn more, ask your child’s doctors about the COG survivor guidelines. You can also download them for free on the COG Web site: www.survivorshipguidelines.org. The guidelines are written for health care professionals. Patient versions of some of the guidelines available (as “Health Links”) on the site as well, but we urge you to review them with a doctor.
For more about some of the possible long-term effects of treatment, see our document called Children Diagnosed With Cancer: Late Effects of Cancer Treatment.
Seeing a new doctor
At some point after your cancer is found and treated, you may find yourself in the office of a new doctor who doesn’t know anything about your past cancer. It is important that you be able to give your new doctor the exact 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 this information handy and always keep copies for yourself:
- A copy of your pathology reports from any biopsy or surgery
- If you had surgery, a copy of your operative report
- Copies of imaging tests (CT or MRI scans, etc.), which can usually be stored on a CD, DVD, etc.
- If you were in the hospital, a copy of the discharge summary that the doctor wrote when you were sent home
- If you had radiation treatment, a copy of the treatment summary
- If you had chemo or other treatments, a list of your drugs, drug doses, and when you took them
Last Medical Review: 02/05/2013
Last Revised: 02/07/2014