The advances made recently in treating lung cancer also may offer better ways of managing the variety of side effects that accompany a diagnosis. More services are now available to provide care for the whole person instead of just the disease. Designed to improve your overall well-being, these services are known as palliative care or supportive care. Palliative care is often confused with hospice care, but palliative care services may be used at any time during the cancer care continuum, while hospice focuses on end-of-life care.
Also referred to as comfort care and symptom management, supportive care addresses the physical, emotional, practical, spiritual, financial and family-related challenges associated with cancer. Many people use it to manage physical side effects, but other resources available include assistance with nutrition, fitness, mental health and physical/occupational therapy. Your family members, caregivers and others close to you can also benefit from this support.
To ensure that your supportive care meets your unique needs, you’ll work closely with members of your health care team, which may include an advanced practice nurse, physical therapist, dietitian or palliative medicine specialist, who have extra training in symptom management. This team is skilled in side effect management. These services may be offered at a hospital, cancer center or medical clinic.
Your need for various services may change. Some types of supportive care may include medications for pain, cough suppression and breathing assistance; opening closed airways; appetite stimulants; nutritional supplements to reduce weight loss; and reducing nausea, anxiety, depression, constipation, fatigue and sleep problems. It may also include extra oxygen, emotional counseling and integrative services such as massage and meditation.
Physical Side Effects
One of the most common concerns with lung cancer treatment is the potential physical side effects. It is recommended that you talk with your medical team before treatment begins about possible severe and common side effects and what to do if they occur. It is also important to receive, discuss and sign a written consent form for any treatment.
Potentially severe side effects are usually uncommon, but they can occur with certain treatments. Ask your doctor whether you are at risk from the therapies in your treatment plan, how to identify the symptoms and when to seek emergency care. Report symptoms immediately so they can be treated right away.
Immune-related adverse events (irAEs) are potentially serious side effects of 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.
Making and staying on schedule with all medical appointments is very important because routine laboratory tests and imaging may detect an irAE in early stages before you can feel symptoms. Contact your health care team if symptoms arise between appointments, and remain alert to the possibility of irAEs for up to two years after completing immunotherapy.
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 treatments that are 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. Other symptoms, such as shaking, chills, low blood pressure, dizziness, throat tightness, skin rash or flushing, breathing difficulties and irregular heartbeat, can be serious or even fatal without medical intervention.
Common physical side effects can occur with many types of cancer treatment. Every person’s reaction is unique, even when the diagnosis and treatment are similar. Most treatments have physical side effects, but you likely won’t experience all of them. Learn the symptoms of some physical side effects so you can let your doctor or palliative care team know if they occur (see Table 2, page 13).
Emotional Side Effects
You may expect to have some physical side effects, but you may not anticipate the emotional side effects. Cancer affects more than just the body, so it is important to be aware of your mental health.
Emotional support is available in person and online. Many organizations offer buddy programs that pair you with another person who has the same type of cancer as you. Sharing your feelings with people who can relate because they have been through something similar can be very satisfying.
The following are some emotions you may experience and suggestions for ways to feel better. Contact your health care team about excessive crying or continued feelings of hopelessness or despair.
Anxiety can begin as soon as you receive your diagnosis. Moderate to severe anxiety is often treated with medication, therapy or a combination of both. Explore relaxation techniques, such as meditation, muscle relaxation, yoga or guided imagery. Peer-to-peer cancer support volunteers can offer insight into what to expect, and they’re often available by phone or online.
Depression is a psychological reaction to your situation as a whole. Certain ongoing treatments, such as chemotherapy or hormone therapy, can cause or contribute to depression. Don’t avoid talking to your doctor about it because you think depression is just part of having cancer — it isn’t. Talk with your doctor if you feel hopeless, helpless or numb. It is important to know that if these feelings last more than a few days or if you have thoughts of death or of suicide, you should seek medical attention immediately.
Doubt can lead to confusion and questions about the meaning of life and its purpose. Some people find strength in support from family, friends, the community or spirituality. It may also help to open up to a counselor or support group.
Embarrassment is possible. A great deal of stigma surrounds a lung cancer diagnosis, but it shouldn’t. Lung cancer occurs in people who both have and have not used tobacco. Regardless of smoking status, no one deserves cancer. Ask other lung cancer survivors how they manage this feeling.
Fear is common. Making plans may become difficult because every ache and pain triggers a concern. Do your best to stay focused on the present.
Guilt may occur if you feel you’ve been a burden to loved ones or if you wonder why you survived when others with similar conditions didn’t. Talk with a therapist about these feelings. You might find that you can lessen your guilt by giving back to the cancer community. Helping others may provide a sense of purpose and well-being that can take away some of the blame you may be placing on yourself.
Scanxiety is a word that describes the anxiety that can happen when you are awaiting results from imaging scans, laboratory tests or examinations you have as part of your treatment or follow-up plan. Scanxiety can be extremely stressful, and it may help to find ways to manage it.
Remind yourself that it is normal to feel this way. Set up expectations with your medical team so you can know when to expect results instead of being left waiting and wondering. Keep your mind occupied with things you enjoy, such as reading, exercising, social activities or meditation. Staying busy gives you less time to worry.
Other Support Services
Supportive care extends beyond physical and emotional issues. It includes help with the nutritional, spiritual, financial and family-related challenges that accompany cancer.
Dietary support may help if you have challenges eating or with your appetite. If a dietitian or nutritionist is not on your health care team, ask for a referral.
Spiritual or religious guidance may be available from a chaplain or spiritual care advisor at the hospital or in your religious community. Spiritual support is available to you even if you do not consider yourself a religious person.
Financial counseling is accessible from a social worker, nurse navigator or financial counselor. It may include information pertaining to health insurance and legal documentation so your information is up to date. Understanding the costs early and learning about potential financial resources may make you feel more in control.
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|
Some Common Physical Side Effects
|Bone loss and pain||Weakened bone caused by the cancer or treatment|
|Breathing problems||Shortness of breath (dyspnea) with or without cough (may be caused by anemia, a lower-than-normal red blood cell count), upper respiratory infections|
|Bruising and bleeding||May be caused by thrombocytopenia, a lower-than-normal number of platelets in the blood|
|Chemo brain (cognitive dysfunction)||Brain fog, confusion and/or memory problems|
|Constipation||Difficulty passing stools or less frequent bowel movements compared to your usual bowel habits|
|Decreased appetite||Eating less than usual, feeling full after minimal eating, not feeling hungry|
|Diarrhea||Frequent loose or watery bowel movements that are commonly an inconvenience but can become serious if left untreated|
|Edema||Swelling caused by excess fluid in body tissues|
|Fatigue||Tiredness that is much stronger and harder to relieve than the fatigue a healthy person has; may also be caused by anemia, a lower than normal red blood cell count|
|Fever||Raised body temperature that could signal an infection|
|Hair loss (alopecia)||Hair loss on the head, face and body|
|Nausea and vomiting||The feeling of needing to throw up and/or throwing 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|
|Skin reactions||Rash, redness and irritation or dry, flaky or peeling skin that may itch|