What Happens After Treatment for Lymphoma of the Skin?
For some people with skin 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 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. See Understanding Recurrence for more detailed information on this.
For many people, the lymphoma may never go away completely. These people may get regular treatments with chemotherapy, radiation, or other therapies to help keep the lymphoma under control for as long as possible and to help relieve symptoms from it. Learning to live with lymphoma as more of a chronic disease can be difficult and very stressful. It has its own type of uncertainty. See Managing Cancer as a Chronic Illness for more about this.
Whether you have completed treatment or are still being treated, your doctors will still want to watch you closely with regular physical exams, blood tests, and possibly imaging tests. It is very important to go to all of your follow-up appointments.
You may need to have frequent blood tests to monitor your bone marrow function, to check that you have recovered from treatment, and to look for possible signs of disease recurrence. Rarely, blood cell counts can become abnormal as a long-term side effect of chemotherapy. If chemo damages the bone marrow, a disease called myelodysplasia can occur. In some cases this might even lead to acute leukemia.
The choice of other tests depends on the type, location, and extent of your lymphoma. If lymph nodes or other organs are affected, CT scans may be used to measure the size of any remaining tumors. PET scans may be done if your doctors aren’t sure if an abnormal area on a CT scan is an active lymphoma or scar tissue.
Almost any cancer treatment can have side effects. Some may last for only a short time, but others can last longer, or might even be permanent. Tell your cancer care team about any symptoms or side effects that bother you so they can help you manage them.
If the lymphoma does come back at some point, further treatment will depend on where it recurs, what treatments you’ve had before, how long it’s been since treatment, and your overall health. For more information, see What if the Lymphoma Keeps Growing or Comes Back After Treatment? For more general information on dealing with a recurrence, see Coping with Cancer Recurrence.
Seeing a new doctor
At some point after 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. 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(s) from any biopsies or surgeries
- Copies of imaging tests (CT or MRI scans, etc.) or photographs, which can usually be stored digitally (on a DVD, etc.)
- If you had surgery, a copy of your operative report(s)
- If you stayed in the hospital, a copy of the discharge summary that the doctor wrote when you were sent home
- If you had chemotherapy or other drug treatments, 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 names and contact information of the doctors who treated your lymphoma
It is also very 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.
Last Medical Review: August 4, 2014 Last Revised: February 24, 2016