Living as a Colorectal Cancer Survivor
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 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 care, including your cancer screening tests.
Typical follow-up schedules after colorectal cancer
Even if you have completed treatment, you will likely have follow-up visits with your doctor for many years. It’s very important to go to all of your follow-up appointments. During these visits, your doctors will ask if you are having any problems and may do exams and lab tests or imaging tests to look for signs of cancer or treatment side effects.
Some treatment side effects might last a long time or might not even show up until years after you have finished treatment. Your doctor visits are a good time to ask questions and talk about any changes or problems you notice or concerns you have.
Your doctor will probably recommend you have a physical exam and some of the tests listed below every 3 to 6 months for the first couple of years after treatment, then every 6 months or so for the next few years. People who were treated for early-stage cancers may do this less often.
In most cases, your doctor will recommend you have a colonoscopy within a year after surgery. If the results are normal, most people won’t need another one for 3 years. If the results of that exam are normal, then future exams often can be about every 5 years. If the colonoscopy shows abnormal areas or polyps, the test may be needed more often.
If you had rectal cancer that was removed with a transanal excision (the surgery was done through your anus), your doctor will likely recommend you have a proctoscopy every 3 to 6 months for the first couple of years after treatment, then every 6 months or so for the next few years. This allows the doctor to get a close look at the area where the tumor was to see if the cancer might be coming back.
Whether or not your doctor recommends imaging tests will depend on the stage of your cancer and other factors. CT scans may be done regularly, such as once every 6 months to a year, for those at higher risk of recurrence, especially in the first few years after treatment. People who had tumors in the liver or lungs removed might be scanned even more often, maybe every 3 to 6 months for the first few years.
Blood tests for tumor markers
Carcinoembryonic antigen (CEA) is a substance called a tumor marker that can be found in the blood of some people with colorectal cancer. Doctors often check levels of this marker with a blood test before treatment begins.
If it's high at first and then goes down to normal after surgery, it can be checked again when you come in for follow-up (typically every 3 to 6 months for the first couple of years after treatment, then every 6 months or so for the next few years). If the CEA level goes up again, it might be a sign that the cancer has come back, and colonoscopy or imaging tests might be done to try to locate the site of recurrence.
If tumor marker levels weren’t elevated when the cancer was first found, they aren’t likely to be helpful as a sign 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.
Managing long-term side effects
Most side effects go away after treatment ends, but some may continue and need special care to manage. For example, if you have a colostomy or ileostomy, you may worry about doing even everyday activities. Whether your ostomy is temporary or permanent, a health care professional trained to help people with colostomies and ileostomies (called an enterostomal therapist) can teach you how to care for it. You can ask the American Cancer Society about programs offering information and support in your area. Learn more about managing and caring for an ostomy in Colostomy Guide and Ileostomy Guide.
Can I lower my risk of colorectal cancer progressing or coming back?
If you have (or have had) colorectal cancer, you probably want to know if there are things you can do to help lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements. Fortunately, research has shown there are some things you can do that might be helpful.
Getting to and staying at a healthy weight
A lot of research suggests that being overweight or obese (very overweight) raises your risk of colorectal cancer coming back, as well as the risk of dying from colorectal cancer. But there's less research to show whether losing weight during or after treatment can actually lower the risk of colorectal cancer recurrence.
Of course, getting to a healthy weight has other health benefits. But if you’re thinking about losing weight, it’s important to discuss this with your doctor, especially if you're still getting treatment or have just finished it.
A good deal of research suggests that people who get regular physical activity after treatment have a lower risk of colorectal cancer recurrence and a lower risk of dying from colorectal cancer. Physical activity has also been linked to improvements in quality of life, physical functioning, and fewer fatigue symptoms. It’s not clear exactly how much activity might be needed, but more seems to be better.
It’s important to talk with your treatment team before starting a new physical activity program. This might include meeting with a physical therapist, too. Your team can help you plan a program that can be both safe and effective for you.
Eating a healthy diet
In general, it’s not clear that eating any specific type of diet can help lower your risk of colorectal cancer coming back. Some studies have suggested that colorectal cancer survivors who eat diets high in vegetables, fruits, whole grains, chicken, and fish might live longer than those who eat diets with more refined sugars, fats, and red or processed meats. But it’s not clear if this is due to effects on colorectal cancer or possibly to other health benefits of eating a healthy diet.
Still, there are clearly health benefits to eating well. For example, diets that are rich in plant sources are often an important part of getting to and staying at a healthy weight. Eating a healthy diet can also help lower your risk for some other health problems, such as heart disease and diabetes.
So far, no dietary supplements have been shown to clearly help lower the risk of colorectal cancer progressing or coming back. This doesn’t mean that none will help, but it’s important to know that none have been proven to do so.
Vitamin D: Some research has suggested that colorectal cancer survivors with higher levels of vitamin D in their blood might have better outcomes than those with lower levels. But it’s not yet clear if taking vitamin D supplements can affect outcomes.
Calcium: Some research has suggested that calcium supplements can lower the risk of colorectal polyps in people who have previously had polyps. But it’s not clear if calcium supplements can lower the risk of colorectal cancer coming back.
Dietary supplements are not regulated like medicines in the United States – they do not have to be proven to work (or even be 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 first. They can help you decide which ones you can use safely while avoiding those that could be harmful.
Drinking alcohol has been linked with an increased risk of getting colorectal cancer, especially in men. But whether alcohol affects the risk of colorectal cancer recurrence is not as clear.
The American Cancer Society recommends that people who drink alcohol limit their intake to no more than 1 drink a day for women and no more than 2 drinks a day for men. This can help lower their risk of getting certain types of cancer (including colorectal cancer). But for people who have finished cancer treatment, the effects of alcohol on recurrence risk are largely unknown.
This issue is complicated by the fact that low to moderate alcohol use has been linked with a lower risk of heart disease.
Because this issue is complex, it’s important to discuss it with your health care team, taking into account your risk of colorectal cancer recurrence (or getting a new colorectal cancer), your risk of heart disease, and your risk of other health issues linked to alcohol use.
Research has shown that colorectal cancer survivors who smoke are more likely to die from their cancer (as well as from other causes). Aside from any effects on colorectal cancer risk, quitting smoking can clearly have many other health benefits.
If you're thinking about quitting smoking and need help, talk to your doctor, or call the American Cancer Society at 1-800-227-2345 for information and support.
If the cancer comes back
If the cancer does recur at some point, your treatment options will depend on where the cancer is, what treatments you’ve had before, and your overall health. For more information on how recurrent cancer is treated, see Treatment of Colon Cancer, by Stage or Treatment of Rectal Cancer, by Stage.
For more general information on recurrence, see Understanding Recurrence.
Could I get a second cancer after colorectal cancer treatment?
People who’ve had colorectal cancer can still get other cancers, In fact, colorectal cancer survivors are at higher risk for getting another colorectal cancer, as well as some other types of cancer. Learn more in Second Cancers After Colorectal Cancer.
Moving on after colorectal cancer
Some amount of feeling depressed, anxious, or worried is normal when colorectal 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.
Sexuality and feeling good about your body
Learning to be comfortable with your body during and after colorectal cancer treatment is a personal journey, one that is different for everyone. Information and support can help you cope with these changes over time. Learn more in Sexuality for the Man With Cancer or Sexuality for the Woman With Cancer.
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Libutti SK, Willett CG, Salz LB, Levine RA. Chapter 60: Cancer of the rectum. In: DeVita VT, Lawrence TS, Rosenberg SA, eds. DeVita, Hellman, and Rosenberg’s Cancer: Principles and Practice of Oncology. 10th ed. Philadelphia, Pa: Lippincott Williams & Wilkins; 2015.
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National Comprehensive Cancer Network, Clinical Practice Guidelines in Oncology (NCCN Guidelines®), Rectal Cancer, Version 4.2017 -- January 18, 2018. Accessed at www.nccn.org/professionals/physician_gls/pdf/rectal.pdf on February 15, 2018.
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Van Schaeybroeck S, Lawler M, Johnston B, et al. Colorectal cancer. In: Neiderhuber JE, Armitage JO, Doroshow JH, Kastan MB, Tepper JE, eds. Abeloff’s Clinical Oncology. 5th ed. Philadelphia, Pa: Elsevier; 2014: 1278-1335.
Information provided by American Cancer Society.