Colorectal Cancer Survivorship: What Every Survivor Should Know

Colorectal cancer (CRC) is the third most common cancer in the United States for both men and women with an overall lifetime risk of approximately one in 20. Fortunately, death from colorectal cancer has dramatically declined thanks to advances in therapeutic treatment options and an increase in the number of people undergoing colorectal cancer screening such as colonoscopy or stool testing for blood. Thus, there are an increasing number of long-term colorectal cancer survivors.

Survivorship begins at the time of diagnosis and continues throughout the life of the affected individual. The term survivor also includes family, friends, and caregivers of an individual diagnosed with cancer, as they are also impacted by the diagnosis. As CRC survivors like you are living longer, they are encountering new problems and bringing to light issues and needs unique to this population. This article reviews some of the key issues encountered by CRC survivors, including follow up care, management of treatment related side effects, and healthy lifestyle behaviors to optimize life beyond colorectal cancer.

Surveillance and Monitoring: An Important Component of Care

Transitioning from active treatment to post treatment care is usually a joyous but anxious time for many survivors. Questions may arise about what happens after treatment is over. The risk of recurrence of your cancer is highest within the first five years after diagnosis. In addition, long-term survivors have a higher chance of developing new colorectal cancers than people without a history of the disease. Therefore, continued follow up and surveillance is paramount for early detection of recurrent or a new primary CRC, because in some cases additional treatment can result in a second remission or even cure.

Surveillance recommendations have been developed by the National Comprehensive Cancer Network and the American Society of Clinical Oncology. These recommendations include regular oncology-specific office visits every three to six months for five years following the diagnosis. During these visits, you will typically undergo a complete physical examination and blood work including monitoring of the blood tumor marker CEA (carcinoembryonic antigen), a protein made by most colorectal cancers. Because CRC survivors are also at risk for additional primary CRCs, surveillance recommendations also include a repeat colonoscopy between six months and one year following surgery and then at regular intervals of one to five years, depending on the presence of polyps on these colonoscopies. For “high risk” survivors (those considered by their health care providers to have a higher risk for cancer recurrence), annual imaging with a CT scan is recommended for up to five years.

When it comes to who manages your follow up care, there are benefits and drawbacks to being followed exclusively by your primary care physician or your specialist. Your primary care doctor will likely be managing all other medical problems you may have, making it easier for you to receive the care you need with fewer doctor’s visits. Your oncology health care provider may be better equipped to manage long-term complications of cancer and its treatment, and be more aware of post-treatment recommendations for surveillance. Studies have shown that there is no difference in cancer outcomes when survivors were followed by either an oncology specialist or a primary care physician when provided with a surveillance plan. Although both approaches are reasonable, the best approach would be one where there is coordinated care and follow-up planning between your oncologist and primary care provider ensuring that all your needs are met.

In addition to surveillance for recurrence of cancer, CRC survivors are recommended to undergo all age-appropriate medical and cancer screenings. For women, this includes screening for cervical cancer with pelvic exam and breast cancer with mammography. Men should talk with their doctors about screening for prostate cancer. For survivors who have a history of heavy tobacco use or are currently smoking, screening for lung cancer is also recommended. Other procedures such as routine blood pressure and cholesterol measurements, bone density testing, and vaccination against influenza and pneumonia may also be appropriate. Speak with your health care provider about which screening tests are right for you.

Long-term Effects of Treatment: Persistent Symptoms to Know

Depending on the stage of your disease at diagnosis, your treatment may have included surgery, radiation, chemotherapy, or a combination of the three. These lifesaving treatments are often accompanied by side effects that may last long after the treatment has ended (Table 1). Talk with your health care provider about any side effects or symptoms that you may be experiencing during and after treatment, so that they can work with you to come up with a management plan that is right for you.

A commonly encountered effect of treatment is a change in bowel function. Up to 50% of patients with CRC (most commonly rectal cancer patients) report having some degree of bowel problems, such as stool urgency, frequent stooling, difficulty distinguishing gas from stool, diarrhea or constipation, incontinence, liquid stools, inability to defer defecation, or erratic stooling patterns. Rarely, survivors who have undergone radiation therapy as part of their treatment can have difficulties with rectal bleeding or pain. While these symptoms are greatest in the first year after treatment, they can persist long-term. Treatment often involves a combination of anti-diarrheal medications, dietary changes, and protective undergarments. Rectal cancer survivors may also face difficulties with urinary function such as incontinence or sexual problems such as erectile problems, vaginal dryness, or pain with intercourse.

Some survivors may have a colostomy as a result of their treatment. The presence of an ostomy can impact quality of life and body image. Precautions to prevent infection are necessary. Survivors with an ostomy may also have problems with sexual function, body image, and social interactions, which can have a significant emotional toll.

CRC treatment may include chemotherapy drugs such as 5-fluorouracil (5-FU) infusion, capecitabine, and/or oxaliplatin. A common long-term effect of oxaliplatin is chemotherapy-induced neuropathy. Symptoms include numbness and tingling of the hands and feet, which can be severe enough to hinder every day activities. The neuropathy often improves after discontinuation of oxaliplatin, with the average time to recovery being nine months. However, many survivors report persistent neuropathy for up to six years after treatment, although it does not impact everyday life for most survivors. Although there are few medications to treat this problem, studies suggest that drugs such as duloxetine, pregabalin, and others may help those survivors with pain associated with their neuropathy. Discuss any concerns regarding neuropathy or bowel, urinary, or sexual problems you may be experiencing with your health care provider. Together, you can develop a management plan that will best address your needs and fit your lifestyle.

Colorectal Cancer and Healthy Lifestyle Choices: You Can Make a Difference

Healthy lifestyle choices are an important component of care after treatment for cancer and can impact long-term outcomes. Approximately ten percent (10%) of CRC survivors are current smokers, one-third of survivors meet current physical activity guidelines, and less than twenty percent (20%) meet daily dietary intake requirements for fruits and vegetables.

By far, one of the best things you can do for your health is to quit using tobacco, if you have not done so already. Continued tobacco usage after a diagnosis of cancer could increase your risk of developing a new cancer. In addition to increasing the risk of the developing a new cancer, continued smoking may increase the risk of death from colorectal cancer or other diseases such as heart disease. Smoking in the time immediately after surgery for CRC may also delay wound healing or increase the risk of postoperative infections.

Regular physical activity is also important after treatment for CRC. Multiple national guidelines for cancer survivorship care recommend that survivors get at least 150 minutes of moderate intensity or 75 minutes of vigorous intensity physical activity weekly. Multiple studies of groups of CRC survivors, including survivors who received chemotherapy, demonstrated a significant reduction in risk of CRC recurrence with at least 180 minutes of physical activity per week. In addition, increasing levels of exercise after diagnosis lowered the rate of CRC-related death. Physical activity may also improve fatigue during and after treatment.

In addition to physical activity, maintaining a healthy weight and diet has also been shown to be beneficial in CRC survivors. In a study of stage III colon cancer patients who received chemotherapy, very obese patients were found to have an increased risk of recurrence and death compared with normal-weight patients. Proper diet also plays a great role in maintaining good health after a CRC diagnosis. Survivors who indulged in diets high in fat, processed or red meats, high-fat dairy products, desserts, fast food, and foods with a high glycemic index fared worse than those who engaged in healthy diets.

Given the benefit of not smoking, maintaining a healthy body weight, participating in regular physical activity, and adhering to a healthy diet, CRC survivors are encouraged to avoid tobacco use, engage in regular exercise programs tailored to fitness level and capabilities, strive to maintain a healthy body weight throughout life, and consume a healthy diet that includes a variety of foods and limits on red meat, processed foods, and excess sugar.

Finally, many survivors are interested in the use of dietary supplements as potential additive therapy in the treatment of their cancer. Currently, no dietary supplement or vitamin has been shown to provide a significant benefit after a diagnosis of cancer. In fact, the American Cancer Society specifically recommends against the use of dietary supplements for cancer survivors. However, a growing body of literature suggests that daily low or full dose aspirin may lower the risk of CRC recurrence and the development of colonic polyps in patients previously diagnosed with CRC. Although aspirin may be beneficial in some CRC survivors, there are risks such as bleeding associated with taking aspirin. Talk with your doctor before you begin taking aspirin to make sure that it is safe and appropriate for you.

Survivorship Considerations in Genetic Syndromes

People who harbor a genetic predisposition to colorectal cancer have additional considerations in the survivorship phase. Although the vast majority of colorectal cancers are not caused by a genetic mutation, five percent (5%) of cases are genetically inherited; thus, you and your health care providers should thoroughly discuss your family history to identify possible heritable conditions, such as Lynch syndrome and familial adenomatous polyposis (FAP). Survivors known to have a genetic syndrome have a higher risk of a second CRC, and may be at risk for additional gastrointestinal cancers, endometrial cancer, kidney or urinary tract cancers, and ovarian cancer (45). Additional surveillance tests such as urine tests, pelvic exams with uterine biopsies, more frequent colonoscopy, upper endoscopy, or prophylactic surgery may be included in your surveillance plan. Talk to your health care provider about whether consideration of genetic testing or counseling is right for you.


Improvements in detection and treatment have resulted in an ever-growing population of CRC survivors like you. After treatment, surveillance and screening for cancer and its effects remain important while management of long-term side effects will optimize your quality of life. Changes in lifestyle such as increasing the amount of physical activity you do, maintaining a healthy body weight, not smoking, and eating a healthy diet can also improve quality of life and long-term outcomes after treatment. Talk with your health care provider about the best surveillance plan for your particular situation, as well as how best to manage any symptoms you may have after treatment is complete. Discuss how healthy lifestyle behaviors can be incorporated into your daily routine, and whether interventions such as aspirin use or genetic testing is right for you. By talking with your health care providers and identifying concerns throughout treatment and into survivorship, you can look forward to the best possible outcome—a life beyond colorectal cancer.

The information found here is not intended to provide nor should it be interpreted to provide professional medical, legal or financial advice. You should consult a trained professional for more information.

Category: Experts Speak

Tags: bowel function, cancer screenings, CancerForward, colonoscopy, Colorectal Cancer Survivorship, colostomy, CRC, Crystal Denlinger, CT scan, Julie Innocent Woods, management plan, neuropathy, polyps, stool testing, Surveillance Plan