Living as a Uterine Sarcoma Survivor

Completing treatment can be both stressful and exciting. You will be relieved to finish treatment, yet it’s hard not to worry about cancer coming back. This is a very common if you’ve had cancer.

For some, the cancer will never go away completely. Some people may continue to get chemotherapy, radiation therapy, or other treatments to try and control the cancer for as long as possible. Learning to live with cancer that does not 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 about any problems you are having and may order 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 might last a long time. Some side effects might not even show up until years after you have finished treatment. 

It is important to let your cancer care team know about any new changes or problems because they could be caused by the cancer coming back, a new disease, or a second cancer.

Doctor visits

If there are no more signs of uterine sarcoma, many doctors recommend follow-up visits (which might include imaging tests and blood tests) with a physical exam every 3 to 4 months for the first few years after treatment, then every 6 to 12 months for the next few years after that. People who were treated for early-stage cancers may need exams less often. Some doctors may advise different follow-up schedules depending on your risk of the cancer coming back.

Survivors of uterine sarcoma should also follow the American Cancer Society Guidelines for the Early Detection of Cancer, such as those for breast, lung, and colorectal cancer.

Ask your doctor for a survivorship care plan

Talk with your doctor about developing your survivorship care plan. This plan might include: 

• A suggested schedule for follow-up exams and tests
• A schedule for other tests you might need in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from your cancer or its treatment
• A list of possible late- or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
• Diet and physical activity suggestions
• Reminders to keep your appointments with your primary care provider (PCP), who will monitor your general health  

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 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 my risk of uterine sarcoma progressing or coming back?

If you have (or have had) uterine sarcoma, 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. Unfortunately, it’s not yet clear if there are things you can do that will help.

Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. We do know that these types of changes can have positive effects on your health that can extend beyond your risk of uterine sarcoma 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 uterine sarcoma 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 drugs 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 the cancer does return at some point, your treatment options will depend on where the cancer is, what treatments you’ve had before, and your health. For more information on how recurrent cancer is treated, see Treatment for Uterine Sarcoma, by Type and Stage.

For more general information, see Understanding Recurrence.

Getting emotional support

It is normal to feel depressed, anxious, or worried 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 Coping With Cancer.

Second cancers after uterine sarcoma treatment

Cancer survivors can be affected by a number of health problems, but often their greatest concern is facing cancer again. If a cancer comes back after treatment it is called a recurrence. But some cancer survivors develop a new, unrelated cancer later. This is called a second cancer. 

Unfortunately, being treated for uterine sarcoma doesn’t mean you can’t get another cancer. People who have had cancer can still get the same types of cancers that other people get. In fact, certain types of cancer and cancer treatments can be linked to a higher risk of certain second cancers.

Survivors of uterine sarcoma can get any type of second cancer, but they have an increased risk of:

• Breast cancer
• Colon cancer
• Rectal cancer
• Small intestine cancer
• Bladder cancer
• Vaginal cancer
• Soft tissue cancer
• Acute leukemia

Colon and breast cancers are the second cancers seen most often.

The increased risks of acute myeloid leukemia (AML) and cancers of the rectum, bladder, and soft tissue seem to be linked to treatment with radiation.

Can I lower my risk of getting a second cancer?

Survivors of uterine sarcoma should follow the American Cancer Society guidelines for the early detection of cancer and stay away from tobacco products. Smoking increases the risk of many cancers.

To help maintain good health, survivors should also:

• Get to and stay at a healthy weight
• Keep physically active and limit the time you spend sitting or lying down
• Follow a healthy eating pattern that includes plenty of fruits, vegetables, and whole grains, and limits or avoids red and processed meats, sugary drinks, and highly processed foods
• Not drink alcohol. If you do drink, have no more than 1 drink per day for women or 2 per day for men

These steps may also lower the risk of some other health problems.

See Second Cancers in Adults for more information about causes of second cancers.