What happens after treatment for aplastic anemia?
For some people with aplastic anemia, treatment may control the disease. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, yet it is hard not to worry about aplastic anemia coming back (when a disease returns, it is called recurrence or relapse). This is a very common concern.
It may take a while before your confidence in your own recovery begins to feel real and your fears are somewhat relieved. Even with no recurrences, people who have had aplastic anemia learn to live with uncertainty. Our document Living With Uncertainty: The Fear of Cancer Recurrence, gives more detailed information on this and has information that applies to people with diseases besides cancer.
For some people with aplastic anemia, treatment improves blood counts, but the disease doesn’t go away completely. These people may have frequent follow-up visits with their doctor and may need transfusions and other treatments. Learning to live with a disease that does not go away 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 (and contains information that applies to people with diseases besides cancer).
When treatment ends, 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 do exams and lab tests. The doctors will continue to watch your blood counts for signs of the disease coming back, as well as for short-term and long-term side effects of treatment. Almost any 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 care team about any changes or problems you notice and any questions or concerns you have.
Your blood doctor will see you for many years after your treatment. Ask what kind of follow-up schedule you can expect.
If aplastic anemia returns, it is often in the first year after treatment. Another concern is that some people with aplastic anemia go on to develop other blood problems, such as paroxysmal nocturnal hemoglobinuria (PNH), myelodysplastic syndrome, or acute leukemia. These conditions can be found early with the blood tests done as a part of your follow-up.
It’s important to keep medical insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their disease coming back, this could happen.
Seeing a new doctor
At some point after your 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 the following information handy:
- A copy of your pathology report(s) from any biopsies (including bone marrow biopsies) or surgeries
- If you had surgery, a copy of your operative report(s)
- If you were in the hospital, a copy of the discharge summary that the doctor prepares when patients are sent home
- If you had radiation therapy, a copy of the treatment summary
- A summary of your drug treatment, including a list of the drugs given, the doses, and when you took them
The doctor may want copies of this information for his records, but always keep copies for yourself.
Last Medical Review: 04/23/2013
Last Revised: 04/23/2013