Moving on after treatment for endometrial cancer

For many women with endometrial cancer, treatment may remove or destroy the cancer. It can feel good to be done with treatment, but it can also be stressful. You may find that you now worry about the cancer coming back. This is a very common concern among those who have had cancer. (When cancer comes back, it is called a recurrence.)

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 women, the cancer may never go away completely. They may get regular treatments with chemotherapy, radiation, hormones, or other treatments to try to help keep the cancer in check. Learning to live with cancer 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.

Follow-up care

When treatment ends, your doctors will still want to watch you closely. It is very important to go to all of your follow-up visits. During these, your doctors will ask questions about any problems you may have and may do exams and lab tests or x-rays and 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. How often you need to be seen depends mostly on what stage your cancer was. Women with lower stage cancers can be seen less often, while those with higher stage cancers have visits that are closer together. Most of the time, when endometrial cancer comes back, it is within the first few years, so the time between visits tend to stretch out over time.

During each follow-up visit, the doctor will do a pelvic exam and check for any enlarged lymph nodes in the groin area. A Pap test may also be done to look for cancer cells in the upper part of the vagina, near the place where the uterus used to be, but this is no longer a standard part of follow-up because it doesn’t often help find endometrial cancer that has come back after treatment. Sometimes a CA 125 blood test is done as a part of follow-up, but this is also not needed in all patients. The doctor will also ask about any symptoms that might point to cancer recurrence or side effects of treatment. Most endometrial cancer recurrences are found based on symptoms, so it is very important that you tell your doctor exactly how you are feeling.

If your symptoms or the physical exam suggest the cancer may have come back, tests like CT scans or ultrasound studies, a CA 125 blood test, and/or biopsies may be done. Studies of many women with endometrial cancer show that if there are no symptoms or physical problems, routine blood tests and imaging tests are not needed.

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, our document When Your Cancer Comes Back: Cancer Recurrence helps you manage and cope with this phase of your treatment.

Seeing a new doctor

At some point after your cancer 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. Make sure you have this information handy and always keep copies for yourself:

• A copy of your pathology reports from any biopsies or surgeries
• If you had surgery, a copy of your operative report
• If you were in the hospital, a copy of the discharge summary that the doctor wrote when you were sent home from the hospital
• If you had radiation treatment, copy of your treatment summary
• If you had chemotherapy (or hormone 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.