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 chemo, radiation, or other therapies 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 difficult 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 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 the type of lymphoma you have, what type of treatment you received, and how well treatment worked.
If you have completed treatment, your doctors will still want to watch you closely. It’s 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/CT 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.
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 or PET/CT scans may be used to measure the size of any remaining tumor masses.
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’s also possible for a person to develop leukemia a few years after being treated for lymphoma.
It’s also important to keep your 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.
If the lymphoma does come back at some point, further treatment will depend on what treatments you’ve had before, how long it’s been since treatment, and your overall health (see the section “If treatment for non-Hodgkin lymphoma stops working”). For more general information on dealing with a recurrence, see our document When Your Cancer Comes Back: Cancer Recurrence.
Seeing a new doctor
At some point after your cancer diagnosis and treatment, you may find yourself seeing a new doctor who doesn’t know anything about your medical history. It’s 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 drug treatment (such as chemotherapy, targeted therapy, or immunotherapy), 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
The doctor may want copies of this information for his records, but always keep copies for yourself.
Last Revised: 01/22/2016