Moving on after treatment for Hodgkin disease
For many people with Hodgkin disease, treatment can cure 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 cancer 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, Hodgkin disease might never go away completely. These people may get regular treatments with chemo, radiation, or other treatments to help keep it under control for as long as possible and to help relieve any symptoms. Learning to live with Hodgkin disease as more of a chronic disease can be hard and very stressful. It has its own type of uncertainty. Our document When Cancer Doesn’t Go Away talks more about this.
After 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 and tests 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 the cancer come back, further treatment will depend on what treatments were used before, how long it’s been since treatment, and a person’s overall health. For more on dealing with a cancer recurrence, see our document When Your Cancer Comes Back: Cancer Recurrence.
It’s also very important to keep your health insurance. While you hope the cancer won’t come back, it could. If it does, you don’t want to have to worry about paying for treatment.
Watching for late and long-term side effects
Each type of treatment for Hodgkin disease has side effects that could last for months or longer, or that might not show up until long after treatment has ended.. 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 small portion of people who get certain types of treatment for Hodgkin disease develop a type of leukemia called AML (acute myeloid leukemia). 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. Cancers of the muscle or bone, called sarcomas, can begin in the area that was treated with radiation. Digestive tract cancers such as colon cancer are also more likely.
Young women (under age 30) who get 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.
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 might 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 having periods with chemotherapy. Radiation treatment near the ovaries can make a woman 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 for 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: People who have had radiation to the chest have a higher rate of heart disease and heart attacks. With more modern treatment this has become less of a problem, but it’s still important that survivors do what they can to help lower risk, such as not smoking, staying at a healthy weight, being active, and eating 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 to get treated for high blood pressure if needed.
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 damage the lungs, so it’s 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. The earlier problems are found, the more likely it is they can be treated.
Along with physical side effects (including those listed above), children who have had cancer may have emotional or psychological issues. 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 for 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 website: www.survivorshipguidelines.org. The guidelines are written for health care professionals. Patient versions of some of the guidelines are available (as “Health Links”) on the site as well, but we urge you to discuss them with a doctor.
For more about some of the possible long-term effects of treatment, see our document Children Diagnosed With Cancer: Late Effects of Cancer Treatment.
Seeing a new doctor
At some point after the cancer is found and treated, you (or your child) might go to a new doctor who doesn’t know anything about your (child’s) cancer history. It is important to be able to give the new doctor the exact details of the 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):
- The names and contact information of the doctors who treated the cancer
- A copy of the pathology reports from any biopsy or surgery
- If you had surgery, a copy of the operative report
- Copies of imaging tests (CT or MRI scans, etc.), which can usually be stored digitally (on a DVD, etc.)
- If you stayed 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 drug treatments, a list of your drugs, drug doses, and when you took them
Last Medical Review: 08/19/2014
Last Revised: 01/13/2015