Living as an Endometrial Cancer Survivor
For many women with endometrial cancer, 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 cancer coming back. (When cancer comes back after treatment, it is called recurrence.) This is a very common concern in people who have had cancer.
For other women, this cancer may never go away completely. They may get regular treatments with chemotherapy, radiation therapy, or other therapies 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.
When treatment ends, your doctors will still want to watch you closely. It is 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 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.
Doctor visits and tests
Endometrial cancer is most likely to come back within the first few years after treatment, so an important part of your treatment plan is a specific schedule of follow-up visits after treatment is finished. How often you need to be seen depends mostly on what stage your cancer was.
- Women who had stage IA low-grade endometrioid cancers (grades 1 and 2) may be seen every 6 months for the first year after treatment, and then yearly after that.
- If the cancer was stage IB or II low-grade endometrioid cancers (grades 1 and 2), follow-up visits are every 3 months for the first year, then every 6 months for the next 4 years, and then once a year.
- For women with higher stage or grade cancers (stages III or IV, or cancers that were grade III, including papillary serous, clear cell, or carcinosarcomas), experts recommend visits every 3 months for the first 2 years, every 6 months for the next 3 years, and then yearly after that.
During each follow-up visit, the doctor will do a pelvic exam (using a speculum) 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 area where the uterus used to be, but it is no longer recommended as a matter of routine due to the low chance of detecting a recurrence. 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 because of symptoms, so it’s very important that you tell your doctor exactly how you are feeling.
If your symptoms or the physical exam results suggest the cancer may have come back, imaging tests (such as 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 no symptoms or physical exam abnormalities are present, routine blood tests and imaging tests are not needed.
Ask your doctor for a survivorship care plan
Talk with your doctor about developing a survivorship care plan for you. This plan might include:
- A suggested schedule for follow-up exams and tests
- A list of potential late or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
- A schedule for other tests you might need, such as tests to look for long-term health effects from your cancer or its treatment
- Suggestions for things you can do that might improve your health, including possibly lowering your chances of the cancer coming back
Keeping health insurance and copies of your medical records
Even after treatment, it’s 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.
At some point after your cancer treatment, you might find yourself seeing a new doctor who doesn’t know about your medical history. It’s important to keep copies of your medical records to give your new doctor the details of your diagnosis and treatment. Learn more in Keeping Copies of Important Medical Records.
Can I lower the risk of my cancer progressing or coming back?
After completing treatment for endometrial cancer, you should see your doctor regularly to look for signs the cancer has come back. Experts do not recommend additional testing to look for second cancers in patients without symptoms. Let your doctor know about any new symptoms or problems, because they could be caused by the cancer coming back or by a new disease or second cancer.
Survivors of endometrial cancer should follow the American Cancer Society guidelines for the early detection of cancer and should also stay away from tobacco products. Smoking increases the risk of many cancers, as well as other health problems.
To help maintain good health, survivors should also:
- Get to and stay at a healthy weight
- Adopt a physically active lifestyle
- Eat a healthy diet, with an emphasis on plant foods
- Limit alcohol to no more than 1 drink per day
Taking these steps may also lower the risk of some other cancers.
If the cancer comes back
If cancer does come back at some point, your treatment options will depend on where the cancer is, what treatments you’ve had before, and your health. Surgery, radiation therapy, chemotherapy, targeted therapy, immunotherapy, or some combination of these might be options. Other types of treatment might also be used to help relieve any symptoms from the cancer. For more on how recurrent cancer is treated, see Treatment Choices by Stage of Endometrial Cancer. For more general information on dealing with a recurrence, you may also want to read When Your Cancer Comes Back: Cancer Recurrence.
Could I get a second cancer after endometrial cancer?
People who’ve had endometrial cancer can still get other cancers, although most don’t get cancer again. Endometrial cancer survivors are at risk for getting some other types of cancer. Learn more in Second Cancers After Endometrial Cancer.
Last Medical Review: February 10, 2016 Last Revised: February 29, 2016