Follow-up after treatment for Hodgkin lymphoma
Follow-up care lets your healthcare team keep track of your health for a period of time after treatment ends. This important part of cancer care is often shared among the cancer specialists and your family doctor. They will help you recover from treatment side effects and monitor you for any signs that the cancer has come back (recurred).
Follow-up care may not seem that important to you, especially if your treatment was long or very hard. You may find the idea of follow-up care stressful because it reminds you of your cancer experience or because you are worried about what a test might reveal. Talk to your healthcare team about how you feel and about why follow-up matters. Your healthcare team is there to help.
Schedule for follow-up visits
Don’t wait until your next scheduled appointment to report any new symptoms and symptoms that don't go away. Tell your healthcare team if you have:
- any new lump or swelling
- fever that won't go away
- night sweats
- weight loss for no reason
- itchy skin
- shortness of breath
- coughing
- discomfort or pain in the abdomen
The chance that HL will come back (recur or relapse) is greatest within 3 years, so you will need close follow-up during this time.
Follow-up visits for HL are usually scheduled:
- every 2 to 4 months for the first 1 to 2 years
- every 3 to 6 months for the next 3 to 5 years
- at least once each year after 5 years
During follow-up visits
During a follow-up visit, your healthcare team will usually ask questions about the side effects of treatment and how you’re coping. They may also ask if you have any new symptoms and if your immunizations are up to date.
Your doctor may do a physical exam, including:
- checking for fever, shortness of breath and rapid heartbeat
- feeling the neck, under the arms and the groin for any swollen (enlarged) lymph nodes
- feeling the abdomen for enlarged organs
Tests are often part of follow-up care. You may have:
- a complete blood count (CBC) to check for abnormal blood cell counts
- blood chemistry tests to check how well certain organs are working
- a test to check how well your thyroid is working (if you had radiation therapy to the neck)
Imaging tests are only done if you have new symptoms or if a physical exam finds swelling or lumps. Tests may include a chest x-ray, CT scan, PET scan or ultrasound.
Anyone who had radiation therapy to the chest has a higher risk for breast cancer. Talk to your healthcare team about your risk, if you need additional tests and if you should have regular screening.
If the cancer has come back, you and your healthcare team will discuss a plan for your treatment and care.
Find out more about follow-up
The following are questions that you can ask the healthcare team about follow-up after treatment for cancer. Choose the questions that fit your situation and add questions of your own. You may find it helpful to take the list to the next appointment and to write down the answers.
- What is the schedule for follow-up visits?
- How often is follow-up scheduled with the cancer specialist?
- Who is responsible for follow-up visits?
- What will happen at a follow-up visit?
- What tests are done on a regular basis? How often are they done?
- Are there any symptoms that should be reported right away? Who do I call?
- Who can help me cope with long-term side effects of treatment?
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