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 detailed information on this.
For some people, the lymphoma may never go away completely. These people may get regular treatments with chemotherapy, radiation therapy, or other therapies 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 difficult and very stressful. It has its own type of uncertainty.
Follow-up care
Lymphomas are a diverse group of diseases that require different treatments and can have very different prognoses (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 effective it was.
If you have completed 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 to 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.
Follow-up tests
Your doctor will probably want to see you regularly, usually every few months for the first year or so and gradually less often after that. Your physical exam will include careful attention to size and firmness of lymph nodes.
Imaging tests may be done, based on the type, location, and stage of lymphoma. If internal lymph nodes or other internal organs are or were affected, CT scans and/or PET scans may be used to measure the size of any remaining tumor masses. PET scans are particularly useful if your doctors aren't sure if a mass seen on CT scan is an active lymphoma or scar tissue.
You may need to have frequent blood tests to check that you have recovered from treatment and to look for possible signs of problems such as lymphoma recurrence. 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. It is also possible for a person to 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. For more information, see the section "If treatment stops working" 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.
Seeing a new doctor
At some point after your cancer diagnosis and treatment, you may find yourself seeing a new doctor who does not know anything about your medical history. It is important that you be able to give your new doctor the details of your diagnosis and treatment. Make sure you have this information handy:
- A copy of your pathology report(s) from any biopsies or surgeries
- 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(s)
- If you were in the hospital, a copy of the discharge summary that doctors prepare when patients are sent home
- If you had chemotherapy or monoclonal antibodies, a list of the drugs, drug doses, and when you took them
- If you had radiation therapy, a summary of the type and dose of radiation and when and where it was given
It is also important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.
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