Focus on Managing Side Effects and Maintaining Quality of Life
Many parts of a colorectal cancer diagnosis and treatment can feel overwhelming. Support to manage the physical and emotional challenges is available from your multidisciplinary team through a wide range of services known as supportive care. This set of services can help you address the physical, emotional as well as the practical, spiritual, financial and family-related challenges you may experience.
A primary focus is to help you prevent, minimize and manage treatment-related side effects. The goal is to help you maintain a good quality of life from the time you are diagnosed through treatment and survivorship.
Also called palliative care, supportive care services are often confused with hospice care. These services can benefit anyone with a serious or life-threatening illness. It is available at any time, whereas hospice care is reserved for end-of-life care.
Supportive care services are often financially covered by individual insurance plans, Medicare or Medicaid. To learn more, you can talk with the hospital’s social worker, financial counselor or your health insurance representative.
Successfully managing the following symptoms and side effects can improve your quality of life.
Potentially Severe Physical Side Effects
Severe side effects aren’t common but can occur with certain types of treatment. Ask your doctor whether you are at risk, how to identify the symptoms and when to seek emergency care. Report symptoms immediately if they occur. The side effects can be easily corrected if they are treated rapidly.
Possible severe side effects include the following:
- Cytokine release syndrome can occur if immune cells affected by treatment rapidly release large amounts of cytokines into the bloodstream. Cytokines are a type of protein made by certain immune and non-immune cells that can stimulate or slow down the immune system. Symptoms may include headache, fever, nausea, rash, low blood pressure, rapid heartbeat and difficulty breathing.
- Immune-related adverse events (irAEs) may occur with certain immunotherapy drugs. They can occur if the immune system becomes overstimulated by treatment and causes inflammation in one or more organs or systems in the body (see Table 1). Some irAEs can develop rapidly, becoming severe and even life-threatening without swift medical attention. Before beginning immunotherapy, talk with your doctor about your risk for irAEs and learn the symptoms.
- Infection can occur as a result of a low white blood cell count (neutropenia) or other factors. Contact your doctor immediately – do not wait until the next day – if you have any of these symptoms: oral temperature over 100.4°F, chills or sweating; body aches, chills and fatigue with or without fever; coughing, shortness of breath or painful breathing; abdominal pain; sore throat; mouth sores; painful, swollen or reddened skin; pus or drainage from an open cut or sore; pain or burning during urination; pain or sores around the anus; or vaginal discharge or itching.
- Infusion-related reactions most frequently occur with treatment given intravenously (IV) through a vein in your arm, usually soon after exposure to the drug. Reactions are generally mild, such as itching, rash or fever. More serious symptoms such as shaking, chills, low blood pressure, dizziness, breathing difficulties or irregular heartbeat can be serious or even fatal without medical intervention.
Table 1. Immune Related Adverse Events (irAEs)
|Body System||irAE||Symptoms and Signs|
|Cardiovascular||Myocarditis||Chest pain, shortness of breath, leg swelling, rapid heartbeat, changes in EKG reading, impaired heart pumping function|
|Endocrine||Endocrinopathies||Hyperthyroidism, hypothyroidism, diabetes, extreme fatigue, persistent or unusual headaches, visual changes, alteration in mood, changes in menstrual cycle|
|Gastrointestinal||Colitis||Diarrhea with or without bleeding, abdominal pain or cramping, bowel perforation|
|Liver||Hepatitis||Yellow/orange-colored skin or eyes (jaundice), nausea, abdominal pain, fatigue, fever, poor appetite|
|Nervous system||Neuropathies||Numbness, tingling, pain, a burning sensation or loss of feeling in the hands or feet, sensory overload, sensory deprivation|
|Neurologic||Encephalitis||Confusion, hallucinations, seizures, changes in mood or behavior, neck stiffness, extreme sensitivity to light|
|Pulmonary/lung||Pneumonitis||Chest pain, shortness of breath, unexplained cough or fever|
|Renal/kidneys||Nephritis||Decreased urine output, blood in urine, swollen ankles, loss of appetite|
|Skin||Dermatitis||Rash, skin changes, itching, blisters, painful sores|
Common Physical Side Effects
Though most cancer treatments do have side effects, keep in mind that you likely won’t have all of them. Every person responds differently, even to the same type of treatment.
There are varying degrees of side effects. Although some are simply an inconvenience, others can disrupt your quality of life. It is critical that you and your doctor discuss ahead of time what you should watch for and what to do if any occur.
|Abdominal pain||Typicaly occurs in the stomach and may include cramping and dull aches. It can be more severe and debilitating than the occasional abdominal pain experienced by healthy individuals.|
|Anemia||Abnormally low red blood cell count.|
|Bleeding problems and bruising||If you experience any of these symptoms, contact your doctor immediately; blood in your stools or black stools; pink or brown urine; unexpected bleeding or severe bleeding that you cannot control; vomit that looks like coffee grounds; coughing up blood or blood clots; increased bruising, dizziness, weakness or confusion; changes in speech; or a headache that lasts a long time.|
|Chemo brain||Brain fog, confusion and/or memory problems|
|Constipation||Difficulty passing stools or less frequent bowel movements compared to your usual bowel habits|
|Diarrhea||Frequent loose or watery bowel movements that are commonly an inconvenience but can become serious if left untreated|
|Fatigue||Tiredness that is much stronger and harder to relieve than the fatigue a healthy person has|
|Fever||Raised body temperature that could signal an infection|
|Hair loss (alopecia)||Hair loss on the head, face and body|
|Hand-foot syndrome||Also known as Palmar-Plantar Erythrodysesthesia. It is characterized by pain, swelling, tightness and redness on the palms of the hands or the soles of the feet. It can also cause painful blisters or calluses.|
|Lymphedema||Swelling where lymph nodes have been removed or damaged|
|Nausea and vomiting||Stomach upset, and the urge to throw up|
|Neuropathy||Numbness, pain, burning sensations, and tingling, usually in the hands or feet at first|
|Neutropenia||Low white blood cell count that increases the risk of infection|
|Pain||Musculoskeletal pain and aches that occur in the muscles, bones, tendons, ligaments or nerves|
|Respiratory problems||Shortness of breath (dyspnea) with or without cough, upper respiratory infections.|
|Skin reactions||Rash, redness and irritation or dry, flaky or peeling skin that may itch|
|Thrombocytopenia||Low number of platelets in the blood, which can lead to bruising and bleeding|
|Weight changes||Gaining or losing weight|
Be alert for side effects that may develop long after treatment ends. These are known as “late effects.” Late effects and other medical conditions can develop months or years after treatment has ended.
Emotional Side Effects
Cancer can affect you emotionally as well as physically. It’s common to experience anger, fear, guilt, insecurity, loneliness and other emotions. Taking care of your well-being may help you better cope with cancer-related issues, including physical side effects. Supportive care services can connect you with resources to manage these feelings.
It is also important to recognize the effect that physical changes from treatment can have on your self-esteem and body image. Treatments may leave scars, discoloration of the skin, hair loss, lymphedema and other conditions. An ostomy may add other challenges. These can affect your mood, self-image and sense of desirability. All of these feelings are completely normal, and it is important to address them.
Support is available through a number of sources, from online and in-person support groups to counselors, psychologists, psychiatrists and other specialists. Contact your doctor about excessive crying or continued feelings of hopelessness or despair. Get immediate medical attention for thoughts of suicide or death.
What Other Types of Support Are Available?
Ask your health care team how to access these valuable services.
Social support is available in many forms. One-on-one buddy programs can pair you with another person who has the same type of cancer as you. Talking with someone who has gone through a similar experience can be extremely helpful. In addition, telephone and email cancer helplines, advocacy groups, national organizations and wish-fulfillment organizations are available.
Mental support includes exercise, counseling, meditation and medications for depression and anxiety. Don’t hesitate to ask your doctor about ways to counteract the symptoms. Treatments and medications can affect how your mind works.
Spiritual support is available from a spiritual care advisor at your treatment center or from your religious community. Many hospitals offer a chaplain who is trained to talk about spiritual concerns such as life and death, regardless of your faith. A spiritual advisor can help you find meaning in life and create legacy plans, and will also work with your social worker to help you with practical, social and emotional issues. Spiritual support is available to you even if you do not consider yourself a religious person.
Financial support is available from a social worker or financial counselor. The stress and anxiety of paying for treatment and other related expenses can negatively affect your well-being. Expenses may include traveling for treatment, daycare and over-the-counter or prescription medications. This resource can also help you apply for medical leave or disability payments if you are unable to work for a period of time.
Ostomy support is available for people who’ve had a colostomy or an ileostomy. Your doctor, a nurse or an enterostomal therapist who specializes in colostomy management will help teach you how to care for, clean and maintain an ostomy. You may consider reaching out to an ostomy support group that includes people who live with ostomies because they can offer first-hand experience.
Rehabilitation support is most often given after cancer treatment, but it can also be given before. When it’s given before treatment, the rehabilitation team can help you build strength so your body is better prepared to handle treatment. This can help reduce the level of pain you experience during or after treatment.
After cancer treatment, the rehabilitation team will teach you exercises that will help your body recover from surgery or improve the function of muscles and tissues damaged by radiation treatment or chemotherapy. These exercises may cause some discomfort in the beginning, but over time, your body will become stronger and this discomfort will pass. Gaining muscle strength can also help control other cancer-related pain.
Dietary support may be necessary after colorectal cancer treatment. Your dietary needs may change and certain foods may be recommended or avoided. A dietitian can work with you and your caregiver to develop a nutrition plan for you. Your dietitian may also function as a liaison between you and your medical team, helping to relay or explain information, and serve as an advocate for you. Ideally, you will meet with one very soon after diagnosis.
In some cases you may need enteral (EN-teh-rul) nutrition, also called tube feeding. This may be your single source of nutrients, or it may be used to add them until you can eat enough by mouth. It may be a temporary or permanent solution. A tube may be placed through the abdomen and into the stomach or intestine to deliver a liquid mixture. It can be given in several “meals” throughout the day (also called bolus feeding), or a specific amount can be delivered over a certain amount of time through the use of a special pump. In the hospital, your health care team will manage this for you. If you need to continue (or begin) this type of feeding at home, you will be trained on the process.