A few things to consider as you navigate the transition from active treatment to long-term survivorship
by Harry Menon, DO, MPH, and Crystal Denlinger, MD, FACP
Gastrointestinal (GI) cancers are those that arise from the esophagus, stomach, liver, pancreas, bile ducts, anus, and small and large intestines. These cancers are often treated with some combination of chemotherapy, radiation, and surgery, which can seem daunting at the time of diagnosis. But don’t be discouraged! Advances in treatment have resulted in improvements in survival and ever-increasing rates of cure. It is possible to live a long, full life after treatment for GI cancer. Here are some things to consider as you navigate the transition from active treatment to long-term survivorship.
Your Survivorship Care Plan
Transitioning care can be challenging for some survivors. Understanding your personal treatment plan is vital. Talk to your doctor about your treatment goals, the anticipated side effects (including long-term or late effects), the duration of treatment, and your follow-up care plan. After treatment, you will typically be monitored for recurrence for the next five years. This involves periodic examinations and imaging studies, with blood tumor marker testing in colorectal, liver, bile duct, and pancreatic cancers. For those on long-term treatment, monitoring includes lifelong imaging and blood tumor marker testing as appropriate.
It’s also important to understand any gene mutations or markers that characterize your tumor, as these may influence treatment options. For colorectal cancer, this includes expression of proteins involved in DNA repair called microsatellites and, for metastatic survivors, whether gene mutations in the RAS or BRAF genes are present. For gastric and esophageal cancer survivors with metastatic disease, the presence of the HER2 gene or protein overexpression is important.
After treatment ends, you should develop a survivorship care plan with your doctor. This includes a summary of your treatment history, strategies for managing cancer- and treatment-related effects, recommendations for developing and maintaining a healthy lifestyle, and a schedule for cancer-related screenings. It’s also important to ensure that your cancer specialists and other physicians communicate with each other about your diagnosis and treatment to ensure that all your health needs are met.
Living with the Side Effects of Cancer Treatment
Treatment for a GI cancer can result in long-lasting or permanent side effects. The most common are pain, sensory neuropathy, fatigue, and bowel function abnormalities. These side effects can hinder your ability to function and lower your quality of life. As side effects are different for each person, you should work with your oncologist to manage those that affect you.
After treatment ends, you should develop a survivorship care plan with your doctor.
Pain is a common side effect for GI cancer survivors, especially those living with metastatic disease. People treated with oxaliplatin can have sensory neuropathy (numbness, tingling, or pain in the hands or feet). While there is no way to predict which survivors will experience neuropathy, your doctor may change the dose or stop the drug if you are having persistent symptoms between doses. For most survivors, the neuropathy improves within a year of discontinuing oxaliplatin, although some continue to report symptoms many years after treatment. If neuropathy is painful, it can be managed with medications, although this will not improve numbness. For other types of pain, medications or a referral to a pain management specialist or physical therapist may help.
Fatigue is another issue many survivors face during and after treatment, and it can last months – or longer – after treatment ends. Fatigue can be related to blood loss from newly diagnosed cancer, lowered blood counts during treatment, or the effects of the treatment itself.
One of the best ways to combat cancer-related fatigue is to stay as active as possible, striving to engage in at least 30 minutes of activity daily and limiting how much time you spend sitting or lying down. There is no one “best” activity; the most important thing is to avoid inactivity. Talk to your doctor about what types of exercises or activities may be best for you, as side effects, such as neuropathy, or an ostomy may influence which activities will work well for you and which ones you should avoid.
Some survivors may also cope with bowel dysfunction after GI cancer treatment. For survivors of upper GI tract cancers (such as esophageal or stomach cancer) who have had their cancers removed, eating small, more frequent meals and not drinking liquids with meals can be helpful. Limiting late-night eating and avoiding lying down after meals can also help.
Now is the time to take charge of your health by working on losing any extra weight, improving your diet, and becoming more active.
Certain stomach cancer survivors may also have problems absorbing vitamin B12 or iron and may need monitoring and supplementation if levels are low. Pancreatic cancer survivors may need pancreatic enzyme supplements to improve digestion, as many lose the ability to make necessary digestive enzymes usually produced by the pancreas. This syndrome, called pancreatic exocrine insufficiency, can result in weight loss, bloating, and floating stools, as the body has difficulty absorbing the undigested nutrients. Enzyme supplements can be taken before a meal to aid in digestion.
Colon and rectal cancer survivors may deal with multiple bowel changes. Frequent or clustering of bowel movements can occur, as can issues with passing gas or stool. Diet modifications, such as limiting lactose or foods associated with frequent bowel movements or gas, can help.
The “Invisible” Side Effects of Cancer
Some GI cancer survivors may experience nutritional, psychosocial, or practical challenges that arise during or after treatment. These side effects are just as important as the physical ones. Survivors may feel distressed, depressed, or anxious about their diagnosis, the possibility of recurrence, or the resultant effects on their lives. Those with ostomies may also have body image issues or may worry about not being able to take part in certain activities.
If you are struggling with depression, anxiety, or fear of recurrence, you are not alone. Seek out a support group, consider meeting with a mental health professional (such as a therapist or social worker), engage in activities with friends and family, and talk with your oncology team about whether medication would be helpful.
Survivors may also experience distress over the impact cancer may have on their finances or their ability to return to work. GI cancer survivors are at risk for not returning to work after treatment, so it is important to talk with your doctor about your goals for returning to work and how treatment might affect your ability to work. Financial counseling and monetary aid may be available to those in need. Your cancer care team, or hospital patient navigator or social worker, may be able to point you to available resources.
Creating a Healthy Lifestyle
Preventive medicine and taking care of your overall health is an important part of survivorship. Your individualized survivorship care plan will depend on the treatment you received, any prior medical problems you’ve experienced, and your family history, age, and other risk factors. Cancer survivors are at risk for developing secondary cancers, so it is important to undergo all gender- and age-appropriate cancer screening tests. The earlier a medical problem is caught, the easier it is to treat.
Discuss your family history with your oncology team, as some cancers may be associated with inherited syndromes for which you and your loved ones can be tested. In some cases, if you are found to be a carrier of a gene that increases the risk of certain cancers, your doctor may recommend preventive measures or more intensive screenings.
Screening and management of non-cancer medical conditions are important as well. Heart disease remains a top cause of death in cancer survivors, so routine blood pressure and cholesterol monitoring, as well as diabetes screening, is essential. Be sure to keep up with vaccines as well. Get the flu shot yearly and the pneumococcal and shingles vaccines as recommended by your doctor. If you are still smoking, make a commitment to quit, as smoking increases your risk of certain cancers and other medical problems.
Maintaining an active lifestyle and following a healthy diet is crucial to survivorship. Obesity contributes not only to cancer-related death but also to the development of new cancers. In addition, cancer survivors who eat healthy and engage in regular physical activity may lower their chances of some cancers returning or growing, as well as dying from any cause.
Now is the time to take charge of your health by working on losing any extra weight, improving your diet, and becoming more active. Keep an eye on your calorie intake. Limit simple sugars, saturated and trans fats, and alcohol intake. Focus on a balanced diet with lots of fruits, vegetables, and whole grains, and limit processed or red meats. Take part in regular physical activity or exercise. Survivors should strive for 30 minutes of moderate or greater physical activity, in addition to your regular activity, at least five days a week. It’s OK to start small and work your way up, gradually increasing the time or intensity of your activity. These lifestyle changes can improve your quality of life and survival over time.
The Bottom Line
Cancer survivorship starts at diagnosis. Partner with your healthcare team to understand your cancer and your treatment plan, as well as what you can expect with long-term effects. You can have a high quality of life during cancer and beyond. The key is to be positive with your approach, be vigilant in your surveillance program, and be diligent in maintaining a healthy lifestyle. Take an active role in your survivorship, and one day this diagnosis may be just a notation in your medical history.
Dr. Crystal Denlinger is chief of the Division of Gastrointestinal Medical Oncology, director of the survivorship program, and an associate professor in the Department of Hematology/Oncology at Fox Chase Cancer Center in Philadelphia, PA.
Dr. Harry Menon is a resident physician in the Department of Internal Medicine at Inspira Medical Center in Vineland, NJ. He has a special interest in cancer surveillance and survivorship.
This article was published in Coping® with Cancer magazine, September/October 2017.