Moving on after treatment for non-Hodgkin lymphoma
For many people with non-Hodgkin lymphoma, 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 fears lessen. But it may help to know that many cancer survivors have learned to live with this uncertainty and are leading full lives. Our document Living With Uncertainty: The Fear of Cancer Recurrence gives more information on this.
For some people, the lymphoma may never go away completely. These people may get regular treatments with chemotherapy (chemo), radiation, or other treatments to help keep the lymphoma in check for as long as possible. Learning to live with lymphoma as a 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
Lymphomas are a varied group of diseases that call for different treatments and can have very different outlooks. Your care after treatment will depend to a large extent on what type of lymphoma you have, what type of treatment you received, and how well it worked.
If you have finished treatment, your doctors will still want to watch you closely. It is very important to go to all of your follow-up appointments. During these visits, your doctors will ask about any problems you may have, examine you, and may order lab tests or imaging tests such as CT or PET scans to look for signs of cancer or treatment side effects.
Almost any cancer treatment can have side effects. Some may last for a few weeks or months, but others can last the rest of your life. This is the time for you to talk to your cancer care team about any changes or problems you notice, and any questions or concerns you have.
You may need to have frequent blood tests to check that you have recovered from treatment and to look for signs of problems such as the return of the cancer. Blood counts can also sometimes become abnormal because of a disease called myelodysplasia, which is a defect of the bone marrow that can lead to leukemia. Some chemotherapy drugs can cause this disease. For more on this, see our document Myelodysplastic Syndromes. A person can also develop leukemia a few years after being treated for lymphoma.
If the lymphoma 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.
It is 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. Should your cancer come back, our document When Your Cancer Comes Back: Cancer Recurrence can help you manage and cope with this phase of your treatment.
Seeing a new doctor
At some point after your cancer is found and treated, you may find yourself seeing a new doctor who doesn’t know anything about your medical history. It is important to give your new doctor the exact details of your diagnosis and treatment. Make sure you have this information handy and always keep copies for yourself:
- A copy of your pathology report from any biopsy or surgery
- Copies of imaging tests (CT or MRI scans, etc.), which can usually be stored on a CD, DVD, etc.
- If you had surgery, a copy of your operative report
- 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 (you need to get this from the doctor)
- If you had chemo or other medicines, a list of your drugs, drug doses, and when you took them
Last Medical Review: 04/18/2013
Last Revised: 04/18/2013