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's 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, or other therapies to try to help keep the cancer in check. Learning to live with cancer that doesn't go away can be difficult and very stressful.

Follow-up care

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 may do physical exams, blood 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.

Talk to your doctor about signs of recurrence you should watch for. If you notice any of these changes, see your doctor right away, don't wait until your next appointment:

• Bleeding (from you vagina, bladder, or rectum)
• Decreased appetite
• Unexplained weight loss
• Pain (in your pelvis. hips, belly, or back)
• Cough
• Feeling short of breath
• Swelling in your belly or legs

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 ends. How often you need to be seen depends mostly on what stage and grade the cancer was.

• For most women who had endometrial cancer, experts recommend a physical exam every 3 to 6 months for the first 2 to 3 years, then every 6 or 12 months after that. Imaging tests should be done based on the physical exam and any changes the patient reports.
• For women with higher stage or grade cancers (stages III or IV, or cancers that were grade III, including papillary serous, clear cell, and carcinosarcomas), experts recommend that, along with physical exams, a CT scan of the chest, abdomen (belly), and pelvis is done every 6 months for the first 3 years, then every 6 to 12 months for at least the next 2 years.

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 this is no longer recommended as part of routine follow-up 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're feeling.

If symptoms or the physical exam suggests the cancer might have come back, imaging tests (such as CT scans or ultrasounds), 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 changes are present, routine blood tests and imaging tests aren't 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 endometrial cancer progressing or coming back?

If you have (or have had) endometrial cancer, you probably want to know if there are things you can do that might lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements. While there are some things you can do that might be helpful, more research is needed to know for sure.

Get regular physical activity

Some studies have shown that women who are more physically active after being diagnosed with endometrial cancer might live longer. More research is being done in this area.  

Adopt other healthy behaviors

Adopting healthy behaviors such as not smoking, eating well, and staying at a healthy weight might help, but no one knows for sure. Still, we do know that these types of changes can have positive effects on your health that can extend beyond your risk of endometrial cancer or other cancers.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of endometrial cancer progressing or coming back. This doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.

Dietary supplements are not regulated like medicines in the United States – they don't have to be proven effective (or even safe) before being sold, although there are limits on what they’re allowed to claim they can do. If you’re thinking about taking any type of nutritional supplement, talk to your health care team. They can help you decide which ones you can use safely while avoiding those that might be harmful.

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 of Endometrial Cancer, by Stage. For more general information see Understanding Recurrence.

Could I get a second cancer after endometrial cancer?

People who’ve had endometrial cancer can still get other cancers. In fact, endometrial cancer survivors are at risk for getting certain other types of cancer. Learn more in Second Cancers After Endometrial Cancer.

Getting emotional support

Some amount of feeling depressed, anxious, or worried is normal when cancer is a part of your life. Some people are affected more than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups, professional counselors, or others. Learn more in Life After Cancer.