For some people with acute lymphocytic leukemia (ALL), treatment may get rid of 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 leukemia coming back. (When leukemia comes back after treatment, it is called recurrence.) This is a very common concern in people who have had leukemia.
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 other people, the leukemia may not go away completely. These people may get regular treatments with chemo, radiation, or other treatments to help keep the leukemia in check for as long as possible. Learning to live with cancer that does not go away can be hard and very stressful. It has its own type of uncertainty. See When Cancer Doesn’t Go Away for more about this.
Treatment for ALL can last for years. Even 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 doctor visits. During these visits, your doctors will ask questions about any problems you may have and do an exam. Often, blood tests will be checked to look for signs of leukemia or treatment side effects.
Almost any cancer treatment can have side effects. Some may last for a few weeks or months, but others can be permanent. Please tell your cancer care team about any symptoms or side effects that bother you so they can help you manage them. Use this time to ask your health care team questions and discuss any concerns you might have.
If the leukemia does come back, it usually happens during treatment or shortly after treatment ends. It is unusual for the leukemia to return if there are still no signs of the disease 5 years after treatment.
It is also 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, see When Your Cancer Comes Back: Cancer Recurrence for information about how to manage and cope with this phase of your treatment.
Seeing a new doctor
At some point after your leukemia is found and treated, you may find yourself in the office of a new doctor. It is important that you be able to give your new doctor the exact details of your 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:
- A copy of your pathology report from any biopsy or surgery
- If you had surgery, a copy of your operative report
- 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 your treatment summary
- If you had chemotherapy or targeted therapy drugs, a list of your drugs, drug doses, and when you took them
The doctor may want copies of this information for his records, but always keep copies for yourself.
Last Revised: 02/22/2016