Feeling nervous or concerned about potential side effects is normal. It may reassure you to know that there are many ways to prevent and manage side effects related to treatment. Knowing what to expect can help you prepare. When you discuss treatment options with your doctor, ask about the possible side effects for each option and when they are likely to occur.
Preventing and managing them is also extremely important for the success of your treatment. That means you have an important role in side effect management, too. Keep the lines of communication open with your health care team and let them know as soon as a symptom or side effect occurs. That enables them to address it early, hopefully before it gets worse. Also, be honest with your family and caregiver about the side effects you have and their level of severity.
Potentially Severe Side Effects
Though serious side effects are rare, they can occur with certain types of treatment. 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 if they occur so they can be treated rapidly. Some potentially severe side effects include the following:
- Ascites is a condition in which an abnormal amount of fluid collects in the peritoneal (abdominal) cavity. Ascites can be malignant, meaning it is caused by cancer cells distributed throughout the abdominal cavity, or non-malignant, meaning it is caused by something other than cancer (such as cirrhosis). It can be treated with diet, diuretics, paracentesis (procedure to drain the fluid), chemotherapy or surgery. Your doctor will discuss the option that is best for you.
- Hepatic encephalopathy occurs when the liver is unable to filter toxins in the blood sufficiently. The buildup of these toxins affects the brain and ability of the nervous system to function. Ask your doctor for symptoms to watch for and when to go to the emergency room.
- 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. If you cannot reach your doctor, go to the emergency room.
- Immune-related adverse events (irAEs) may occur with certain immunotherapy drugs if the immune system becomes overstimulated by treatment and causes inflammation in one or more organs or systems in the body. Some irAEs can develop rapidly, becoming severe and even life-threatening without immediate medical attention.
- 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.
Some Common Physical Side Effects
Most cancer treatments have physical side effects, but you likely will not experience all of them. People respond differently, even if they have the same diagnosis and type of treatment.
Be prepared for late effects. These are side effects that develop weeks, months or years after treatment ends. They can vary widely from person to person based on many factors, such as age, gender and overall health status. Because they are hard to predict, knowing what to do if they occur is a good idea. Talk with your doctor about the symptoms to be the most concerned about.
Preparing for Emotional Effects
A cancer diagnosis can cause feelings of distress that affect your mental, physical, social and spiritual being. It is common to experience a range of emotions, from sadness and anger to anxiety and depression as well as loneliness and regret. These feelings, and all others you experience, are valid. It is normal to be concerned about how cancer treatments will affect your health, family and daily life.
Support is available to ensure your whole person is being cared for. You do not need to face these emotional challenges alone. These suggestions may help:
- Understand that your feelings are normal.
- Staying positive is important, but it is just as important to give yourself permission to feel bad, mad or sad sometimes.
- Cancer survivors are valuable resources for support, friendship and insight. Ask about local or online support groups or phone-based peer support programs.
- Explore meditation, gentle yoga, massage therapy, deep breathing exercises or other relaxation techniques.
Taking care of your emotional well-being will help you handle the challenges of cancer treatment. Consider addressing these feelings with the following resources:
- A counselor, psychologist, psychiatrist, nurse or another specialist.
- Support groups. Some offer one-on-one buddy programs that 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 invaluable. In addition, telephone and email cancer helplines and advocacy groups are available.
- Exercise. It may reduce anxiety and depression. Research shows that regular exercise can greatly improve mental health at any time during treatment. Even if you were not active before being diagnosed with HCC, a customized exercise program can be a benefit.list item
You may also have scanxiety, a mixture of anxiety and stress that can happen when you are awaiting results from imaging scans, laboratory tests or exams you have as part of your treatment plan. That is a lot of stress to put on your mind and your body, and it may help to find ways to manage it. In addition to the previous suggestions for relieving anxiety, set expectations with your doctor or nurse about when and how you will receive the results so you are not left waiting and wondering.
Remind yourself that it is normal to feel this way. Consider discussing your fears with your friends, a support group or a therapist. Keep your mind occupied with things you enjoy, such as reading, playing games or gardening. Staying busy gives you less time to worry.
If you or your caregiver notices any of the following symptoms, notify the health care team:
- The inability to follow treatment due to extreme emotional distress.
- Constant thoughts of death or feelings of hopelessness.
- Becoming unusually angry or irritable.
- Withdrawing and isolating yourself from family and friends.
- Feeling worthless or thinking of suicide.
Some Common Side Effects
|Abdominal pain||Cramping and dull aches in the abdominal area|
|Ascites||Fluid accumulation in the abdomen|
|Bleeding problems||Hemorrhaging and bruising|
|Chemo brain (cognitive dysfunction)||Brain fog, confusion and/or memory problems. Also known as cognitive dysfunction|
|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|
|Difficulty swallowing||Also called dysphagia; may include painful swallowing|
|Fatigue||Tiredness that is much stronger and harder to relieve than the fatigue an otherwise 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; may include pain, swelling, tightness and redness on the palms of the hands or soles of the feet; or blisters and calluses|
|Headache||Pain or discomfort in the head|
|Hypertension||Abnormally high blood pressure|
|Lymphedema||Swelling of the extremities|
|Mouth sores||Inflammation in the mouth with blister-like ulcers|
|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|
|Pain||Musculoskeletal pain and aches that occur in the muscles, joints, bones, tendons, ligaments or nerves|
|Proteinuria||High levels of protein in urine|
|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|
|Taste changes||Foods may taste different or bland, or your ability to handle spicy, sweet or bitter foods changes|
|Thrombocytopenia||Low number of platelets in the blood, which can lead to bruising and bleeding|
Draw on the valuable support of palliative care
During HCC treatment, you may experience complications as the disease progresses. This may require additional support and assistance from your multidisciplinary health care team. To be most effective, team members draw on a broad range of services known as palliative care. Also known as a form of supportive care, it addresses the physical, emotional, practical, spiritual, financial and family-related challenges of people diagnosed with cancer and their loved ones.
These services are designed to benefit anyone with a serious or life-threatening illness, from diagnosis through survivorship. Palliative care is often confused with hospice care, which is reserved for end-of-life. Think of the purpose of palliative care as “quality-of-life preservation” or “quality-of-life restoration.”
It is recommended that you seek palliative care assistance soon after diagnosis because the course of HCC is difficult to predict. As liver function decreases, toxins that are normally filtered by the liver can build up, which can cause cognitive decline and other conditions that may make it difficult to think clearly. You may need assistance to understand the prognosis and make decisions about treatment and quality of life.
To begin, ask your doctor for a palliative care referral. Together with a palliative care specialist, you will develop a plan to ease symptoms and improve your quality of life. A specialist may offer the following forms of support:
- Educating you about your illness and prognosis.
- Managing symptoms and quality-of-life issues.
- Defining your terms for quality of life.
- Coordinating care among the health professionals.
- Providing support for decision-making and stress management.
- Referring you to psychosocial support to manage depression, sleep disturbances and other mental health challenges.
- Helping with advance care planning and assisting caregivers. Advance care planning is also recommended as early as possible after diagnosis so you can make decisions before the disease progresses and interferes with normal thinking and decision-making.
- Finding financial counseling through a social worker, nurse navigator or financial counselor.
The palliative care team may include palliative care doctors and nurses, mental health professionals, pain specialists, pharmacists, nutritionists and social workers. This team will work with your doctor and provide an extra layer of support to your care.
Palliative care services are often covered by individual insurance plans, Medicare and Medicaid. To learn more, you can talk with the hospital’s social worker or financial counselor or your health insurance representative.