Navigating the Transition from Active Treatment to Long-Term Survivorship
by Anil Rengan, MD, and Crystal S. Denlinger, MD, FACP
Gastrointestinal cancers are those that arise from the esophagus, stomach, liver, pancreas, bile ducts, gallbladder, small and large intestines, appendix, and anus. A diagnosis of GI cancer can be life altering. However, the advances made in GI cancer treatment over recent years has led to ever-increasing survival rates and longer survivorship for GI cancer survivors. As you finish treatment and begin to transition into survivorship, you may be wondering what the future holds. Here are some things you should consider as you navigate your cancer journey from diagnosis to long-term survivorship.
Your Survivorship Care Plan
After your treatment ends, your doctor will monitor you periodically for recurrence. GI cancer survivors on long-term treatment will be evaluated throughout the entire course of their care. If you’ve been tested for any genetic mutations or protein expression levels within your tumor, it’s important that you review these results with your oncologist so you understand how these may influence your treatment and follow-up care. You should also tell your doctor about any new diagnoses of cancer within your family, even if it has been a while since your own diagnosis. Researchers are learning more about hereditary cancer syndromes, and your personal and family cancer history may qualify you for genetic risk assessment and additional testing.
As you near the end of active treatment, you should work with your doctor to develop a survivorship care plan. This plan will serve as a roadmap to guide you from the end of treatment into long-term survivorship. Your survivorship care plan should include a summary of your treatment history, strategies for managing side effects, healthy lifestyle recommendations, and a follow-up care and monitoring schedule. Your oncology team should also communicate with your other healthcare providers to ensure all your health needs are met.
While most side effects improve after treatment is over, some can be long-lasting or even permanent.
Living with Side Effects
Nearly all GI cancer survivors will experience some side effects during treatment. While most side effects improve after treatment is over, some can be long-lasting or even permanent. The most common long-lasting side effects of GI cancer treatment are pain, sensory neuropathy, fatigue, and bowel dysfunction. In addition, GI cancer survivors may experience nutritional problems, including digestive issues, as well as psychosocial difficulties, like anxiety and depression. All these side effects can hinder your ability to function and lower your quality of life. As each person experiences their own unique set of challenges, it is crucial to discuss the issues you are facing with your oncologist so you can come up with a plan to manage them.
Cancer-related pain is common among GI cancer survivors, especially those living with metastatic disease. GI cancer survivors treated with oxaliplatin can have sensory neuropathy (numbness, tingling, cold sensitivity, or pain in the hands or feet), which can persist after treatment is complete. While there is no way to prevent neuropathy, your doctor may adjust your treatment doses if you develop symptoms during treatment. For most people, neuropathy improves within a year of discontinuing oxaliplatin, although some survivors continue to report symptoms many years after treatment ends. If the neuropathy is painful, medications may help manage the pain, although this will not improve numbness. For other types of pain, your doctor may recommend medications or may refer you to a pain management specialist or physical therapist for treatment.
GI cancer survivors may also experience fatigue, which can last far beyond the end of cancer treatment. The best way to combat cancer-related fatigue is to stay as active as possible during and after treatment. Keep in mind that there is no one “best” type of physical activity. What’s important is that you make a plan to be active, whether that’s walking regularly, taking part in an exercise class, or pursuing a hobby that keeps you moving.
Bowel dysfunction is another side effect that GI cancer survivors often must contend with. For those survivors who’ve had parts of their esophagus or stomach removed, eating smaller, more frequent meals and limiting fluid intake during mealtime can be helpful. As can limiting late-night snacking and avoiding lying down after eating, since both can worsen acid reflux and regurgitation.
Some stomach cancer survivors may have trouble absorbing vitamin B12 and iron and may need to have their levels monitored by a healthcare provider. Likewise, some pancreatic cancer survivors may need to take pancreatic enzyme supplements to help them digest food, 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, gassiness, and floating stools, as the body is unable to absorb the undigested nutrients. Colorectal cancer survivors may deal with multiple bowel irregularities, including increased bowel movements and difficulty passing gas or stool. Diet modifications, such as limiting lactose and foods that cause frequent bowel movements or gas, can help.
Cancer survivors are also encouraged to receive all vaccinations as soon as it is safe to do so.
The psychosocial difficulties of GI cancer survivorship can have just as much impact on survivors as the physical side effects. Many GI cancer survivors deal with anxiety, depression, and fear of recurrence. 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 these feelings, you are not alone. To help you cope, consider joining a support group, meeting with a mental health professional, or opening up to friends and family. You should also talk with your oncology team about how you’re feeling, as they can help you get the support you need.
Making Healthy Choices
As you move through survivorship, it is essential that you take care of your overall health. You should continue following up with your primary care provider for all age- and gender-appropriate preventive health measures like Pap smears and colonoscopies.
Cancer survivors are also encouraged to receive all vaccinations as soon as it is safe to do so. This includes inactivated and recombinant vaccines, which contain viral or bacterial protein. Most vaccines should be given at least two weeks prior to chemotherapy or three months after. Some vaccines (like the flu vaccine) can be given safely during treatment. Live vaccines (MMR, varicella, etc.) are not recommended for those whose immune systems are suppressed. Always consult with your oncologist before receiving any vaccine. You should also talk to your doctor about receiving the COVID-19 vaccine once it becomes available to you.
Maintaining a healthy body weight and eating the right kind of foods are also important for GI cancer survivors. Your diet should consist of high-quality foods that are rich in natural fiber and nutrients. It’s best to stick to fruits, vegetables, legumes, fish, poultry, tree nuts, and whole grains, especially for those with a history of colon cancer. Limiting or eliminating red or processed meats, refined and heavily processed grains, fast foods, and sugar-sweetened beverages is just as important, as these foods are linked to an increased risk of colon cancer recurrence. You should also limit alcohol consumption to no more than one or two drinks per week. If you’re a smoker, make a commitment to quit, as smoking increases your risk of certain cancers and other medical problems.
GI cancer survivors should also try to stay active. Exercise is linked with a reduced risk of disease recurrence, longer survival, and a better quality of life for cancer survivors. Strive for at least 30 minutes of physical activity most days of the week. Your exercise routine should include both aerobic activity (such as brisk walking) and muscle strengthening exercises. Before you begin any new activity or exercise, talk with your doctor about what types of exercises or activities may be best for you, and whether there are any you should avoid.
Thriving, Not Just Surviving
As a GI cancer survivor, the physical and emotional hurdles you have overcome have shaped you into who you are today. Facing cancer is no easy feat, but you did not back down. Now, it is time for you to take charge of your survivorship. Armed with information and in partnership with your healthcare providers, you can have a healthy and thriving future after GI cancer. You deserve it!
Dr. Crystal Denlinger (left) 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. She was also recently named chief scientific officer of the National Comprehensive Cancer Network.
Dr. Anil Rengan (right) is a fellow in the Department of Hematology/Oncology at Fox Chase Cancer Center.
This article was published in Coping® with Cancer magazine, March/April 2021.