What to Expect After Finishing Endometrial Cancer Treatment
The treatment you need for endometrial cancer depends on several things, including the type and stage of cancer and your individual circumstances. So what you can expect in your life after endometrial cancer treatment also depends on several things.
The most common treatment for endometrial cancer is a hysterectomy, or surgery to remove the uterus. In people who have early-stage endometrial cancer and have a hysterectomy, "their quality of life is not going to be any different than somebody who just had the surgery for non-cancerous reasons," says gynecologic oncologist Shitanshu Uppal, MBBS, who is division chief for the gynecology oncology service at the University of Michigan.
Treatment for endometrial cancer used to involve more lymph node dissection, and one of its side effects was lymphedema, or swelling, usually in the legs, Uppal says. But that has become less common.
Here are some things to keep in mind as you move through life after endometrial cancer.
Symptoms to watch out for
Cancer treatment can cause side effects, which may be temporary or permanent. Some common side effects of endometrial cancer treatment include post-surgical pain, fatigue, weight gain, depression or anxiety, pain with intercourse, and vaginal dryness.
Other symptoms may be signs that your cancer is recurring. If you have any of these symptoms, talk to your doctor right away:
- Bleeding from your vagina, bladder, or rectum
- Pain in your pelvis, hips, belly, or back
- Decreased appetite
- Unexplained weight loss
- Swelling in your belly or legs
- Feeling short of breath
- Coughing
If your treatment included removing your ovaries, you may have symptoms of menopause, including night sweats, hot flashes, and vaginal dryness.
"Any bleeding is abnormal. Especially if you've had surgery for endometrial cancer and now you're bleeding, you should be reaching out right away," Uppal says.
If you are at a higher risk, it might be a good idea to check with your doctor about any problems. "With somebody who's at a higher risk of recurrence, we really hammer the point down that, frankly, if anything is not right, just reach out to us," Uppal says, adding that your doctor can let you know if your symptoms aren’t a cause for concern.
Taking Care of Your Physical Health After Endometrial Cancer
After endometrial cancer treatment, it’s important to keep up with your doctor’s post-treatment plan and follow-up appointments.
But beyond that, make sure that you’re taking care of your overall physical health. Living a healthy lifestyle can make you feel better as you transition into life after endometrial cancer treatment.
Eating well
Eating healthy after cancer treatment can help you feel better and regain your strength and energy.
Try to eat a variety of fruits and vegetables and high-fiber foods like whole-grain breads. Choosing fruits and vegetables of many different colors can help you get a variety. Some of the foods and drinks you might want to avoid or limit include red meat, processed meat, alcohol, and sugar-sweetened beverages.
You might want to work with a dietitian to help you come up with a healthy, balanced eating plan.
Staying active
Physical activity is important for your overall health, and it can be helpful after cancer treatment. Getting physical exercise may help you sleep better and feel less tired, strengthen your immune system, maintain a healthy weight, and possibly reduce the risk of your cancer recurring.
A recent study that reviewed research on physical activity for cancer survivors found strong evidence that moderate-intensity aerobic exercise and/or resistance training during and after cancer treatment can reduce anxiety, depressive symptoms, and fatigue. It also found that this exercise can improve physical function and health-related quality of life.
For endometrial cancer in particular, exercise may help with prevention. Studies have suggested that higher levels of physical activity may be linked to a lower risk of endometrial cancer.
The American Cancer Society’s Nutrition and Physical Activity Guideline for Cancer Survivors recommends exercising several times a week for at least 10 minutes at a time, so that you are getting 150 to 300 minutes of moderate activity each week, or 75 to 150 minutes of vigorous activity, each week.
Depending on your existing level of physical activity, this might mean starting slowly and building up to that amount of weekly exercise. Your physical activity should include resistance training at least two days per week and stretching exercises at least two days per week, the guideline says.
Routine checkups
Routine follow-up care is important after endometrial cancer treatment. If endometrial cancer comes back, it usually happens in the first few years of treatment, so make sure you stick with your doctor’s plan for checkups so they can monitor you. How often you’ll need checkups depends on your situation, including the stage and grade of your cancer.
After endometrial cancer treatment, you might get a physical exam every three to six months for the first two to three years, and then every six to 12 months after that. During this exam, your doctor will check for enlarged lymph nodes and ask you about any symptoms you’re having.
Typically, if your endometrial cancer was higher in grade or stage, such as stage III or IV, your follow-up appointments may include tests along with physical exams. Your doctor may have you get a computed tomography (CT) scan of your chest, abdomen (belly area), and pelvis every six months for the first three years, and then every six to 12 months for the next two years or more.
Health insurance
It’s important to maintain health insurance coverage even after treatment for endometrial cancer ends. After treatment, you will need follow-up care for at least the first few years.
If you switch health insurance plans, make sure you understand how your coverage might change, including any significant changes in your deductible, premiums, and out-of-pocket costs.
It’s also a good idea to keep copies of your medical records, especially if you see a doctor who wasn’t involved in your treatment. These records might include pathology reports, imaging test results, records from surgery, and any anti-cancer medications you took.
Making a care plan for life after endometrial cancer
You can talk to your doctor about creating a survivorship care plan. You can find survivorship care plan form examples from groups like the American Society of Clinical Oncology.
This care plan might include a schedule for your follow-up care, with office visits and any tests you should have, as well as a list of late and long-term side effects you might have.
Your plan may also specify some ways you can stay healthy and improve your health, which could lower the chances of your cancer coming back. This may include changes to your diet, alcohol or tobacco use, weight management, and physical activity.
"There's a surprisingly strong association with lifestyle modification, where you do some sort of cardiovascular exercise, where your heart rate goes up – that you can actually boost your immunity, and that also has been shown to reduce recurrences," Uppal says. "From a practical standpoint, when we give patients this information that, 'if you do these things, you may be able to lower the risk,' it gives them some level of hope and autonomy, that ‘I'm going to work on it.'"
Caring for Your Mental Health After Endometrial Cancer
After your treatment, you may have cancer-related mental distress. You might be worried that your cancer will return. For cancer survivors, the fear that the cancer will come back is common.
You might also be distressed about side effects after your treatment ends, concerns about fertility or sexual dysfunction, and survivor’s guilt.
You may feel depressed, anxious, or worried. You may go through posttraumatic stress.
Talk to a health care provider if you’re feeling distressed after treatment. Along with support from family and friends, individual counseling, support groups, and online discussion groups can be helpful. According to Uppal, mindfulness practices and apps may be sources of guidance.
Regular exercise may also boost your mental health by reducing fear, depression, and stress.
Going Back to Work
If you took time off work during cancer treatment, you might feel ready to go back after your treatment ends. But first, check with your health care provider to make sure you’re cleared to go back to work. If you are, consider talking with your employer about whether to go back to your previous level of work or whether you might have options to work from home as you ease back into your job.
If you need accommodations to do your job, such as modifying equipment that you use or making other adjustments in the workplace, talk to your employer about what you need. Employers are required to provide reasonable accommodations to employees with disabilities unless providing them would be an undue hardship.
Can Endometrial Cancer Come Back?
Treatment for endometrial cancer sometimes gets rid of the cancer, but for some people, the cancer never goes away completely. If the treatment does destroy or remove the cancer, there’s a chance it can come back. If it recurs, it may be either local (in the same area) or distant (in the lungs or bone, for example).
The risk that your endometrial cancer will recur depends on several things, including the stage of your cancer and the type, because some types are more aggressive than others.
According to one estimate, about 18% of people with endometrial cancer have a recurrence, mostly in the first two years after primary surgery. But the risk of recurrence varies widely, depending on your individual circumstances.
For example, someone with stage I endometrial cancer and a type that’s not very aggressive, and hasn’t grown into the lymph nodes or the wall of the uterus very much, may have surgery to treat it. "The chances a patient like this is going to recur is less than 5%. And that recurrence risk translates into me saying, ‘You don't need anything else. We'll just monitor you. You're good to go. We'll surveil you, we'll follow you, but we don't need to do radiation, we don't need to do chemo,'" Uppal says.
But someone with a more aggressive type of cancer could have a recurrence risk of 15% to 20%. In this case, "the recommendations are to give them chemotherapy, so that in case some cancer cells have escaped the uterus, we are trying to trap them and kill them," he says.
To figure out the risk of recurrence, doctors consider several things. "We look at how deep [the cancer] is into the wall of the uterus," Uppal says, adding that whether the cancer made its way into the blood vessels, the lymphatics of the uterus, or the lymph nodes are also considered.
Some doctors have begun to use molecular testing to help find out how aggressive the cancer is, Uppal says. It might find that the cancer has a certain mutation in its structure that makes it more aggressive, he says, but the science is still evolving.
How to lower your risk
Eating a healthy diet, getting physical exercise, and keeping up with your follow-up care may help lower the risk of your cancer recurring. But the research thus far doesn't show for sure that these things lower your risk.
The American Cancer Society recommends following its nutrition guidelines for preventing cancer.
One study found that people with endometrial cancer were more likely to die of diseases of their heart and blood vessels than any other cause of death, including endometrial cancer. Obesity is a risk factor for both endometrial cancer and heart and blood vessel disease (also called cardiovascular disease).
This higher risk of death from cardiovascular disease means that it might be a good idea to try to lower your cardiovascular risk as well. For someone who has a low risk of recurrence but who has obesity-related issues, for example, the recommendation would be to work with a health care provider or independently to lower those risks, Uppal says.
Living with the uncertainty
In your life after endometrial cancer, uncertainty about whether your cancer will come back can be difficult to cope with. You may feel overwhelmed, sad, anxious, or fearful. Your fear of recurrence may lessen over time.
People diagnosed with cancer often feel guilty on some level, Uppal says. They might feel like they could have controlled certain factors in their life that led up to having cancer. "Sometimes, there are factors under their control. The classic example is smoking and lung cancer. But those sorts of associations in endometrial cancer – we don't have very clear data to say they are causal," he says.
Feelings of guilt and fear can be normal. While you can’t really control whether your cancer comes back, finding out what you can do to manage your health can give you a sense of control amid the uncertainty.
When fears surface, you might try accepting them and then letting them go.
Takeaways
Adjusting to life after your endometrial cancer treatment ends can be hard. It’s important to keep up with your post-treatment care plan, including regular checkups. It’s also important to take care of your physical and mental health, because you might feel distressed after treatment. Making healthy lifestyle choices, like eating healthy and exercising, could possibly lower your risk of recurrence and also make you feel better.