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 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 living full lives. See Living With Uncertainty: The Fear of Cancer Recurrence, for more detailed information on this.
For some people, the leukemia may not go away completely. These people may get regular treatments with chemotherapy, radiation therapy, or other therapies to help keep the leukemia in check for as long as possible. Learning to live with cancer that does not go away can be difficult and very stressful. It has its own type of uncertainty. See When Cancer Doesn’t Go Away for more about this.
Treatment for ALL typically lasts for years. 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 questions about any problems you may have and might do exams and lab tests or imaging tests 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 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.
It’s 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.
If a relapse occurs, it is usually while the patient is being treated or shortly after they have finished chemotherapy. If this happens, treatment would be as described in “What if the leukemia doesn’t respond or comes back after treatment?” It is unusual for ALL to return if there are still no signs of the disease within 5 years after treatment.
For more general information on dealing with a recurrence, see 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 does not know all the details of your medical history. It is important that you be able to give your new doctor the 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:
- A copy of your pathology report(s) from any biopsies or surgeries
- If you had surgery, a copy of your operative report(s)
- If you stayed in the hospital, a copy of the discharge summary that doctors prepare when patients are sent home
- If you had radiation therapy, a copy of your treatment summary
- If you had chemotherapy or other medicines (like targeted therapy), 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: 02/18/2016