For the Caregiver
Your hard work and support can make a world of difference to a loved one diagnosed with liver cancer. Attending medical appointments, managing medications, running errands and offering emotional support are just some ways you may help. As you prepare to take on these important responsibilities, consider the following suggestions.
1. Get the “OK” to receive medical information. Be sure you are authorized to communicate with your loved one’s health care team, access medical information, renew prescriptions and more. If you are unsure about the forms you may need to sign, ask a member of the health care team.
2. Meet the health care team. Introduce yourself to the doctors, nurse navigator and other key people on the team. Ask questions to help you learn about your loved one’s diagnosis, treatments and unique needs. Determine the best ways and times to contact the team. Building strong relationships will make it easier to communicate openly and honestly with them.
3. Recognize and report symptoms and side effects. It is often difficult for people undergoing cancer treatment to accurately remember and describe symptoms to their doctors. Track symptoms at home with detailed notes to take to appointments along with a running list of questions. Speak up to help clarify details about the frequency, intensity and duration of side effects. Before treatment begins, find out what symptoms should warrant a call to the doctor, a visit to urgent care or emergency medical attention.
4. Keep track of the calendar. Maintain a paper or electronic calendar or one on your phone to track medical appointments and lab tests.
5. Help manage cognitive and physical limitations. An HCC diagnosis and treatment can affect your loved one’s mental focus, memory, thinking skills, emotional stability and stress level — all of which can significantly impair communication skills.
6. Explore telehealth. Find out if your loved one’s medical team offers virtual visits and if they are covered by insurance. This option enables your loved one to stay home if he or she feels unwell or finds it physically challenging to go to an appointment. It is more convenient for people who live far from the medical office, helps limit potential exposure to infections in clinics and hospitals, and offers an easy way to report symptoms or complications between visits.
7. Serve as “Information Central.” You and your loved one can get exhausted as family and friends call with questions about what the doctor said, what the treatment plans are, how the patient is feeling and how they can help. Create an email group so you can send one email with all of the information your loved one is comfortable including. This will dramatically reduce phone calls and individual emails as well as ensure that everyone is getting the same information and at the same time. Siblings, for example, are informed all at once rather than one being communicated with first.
8. Be a good listener. Facing HCC can be overwhelming, and sometimes your loved one may just need someone to talk to. Simply listening is more helpful than you may realize.
9. Take care of yourself. You will be a more effective caregiver if you maintain your own health. Eat right, exercise, keep medical appointments and give yourself time off. Take advantage of family and friends who offer help. Create a list of things that can be delegated to others. People want to help, and you must realize you can’t shoulder all the responsibility alone.
10. Find online support groups and resources. Taking on the role of a caregiver can be challenging, but you do not have to do it alone. There are many resources for the physical and emotional aspects of being a caregiver, including how to manage the stigma of HCC. Ask your health care team for referrals.
Meet Your Health Care Team
People with liver cancer may consult with multiple doctors, specialists and other health care professionals. Some of the following may be on your team.
- Gastroenterologists have special training in diagnosing and treating disorders of the digestive system.
- Hepatobiliary surgeons specialize in surgical procedures for the liver, bile ducts, gallbladder and pancreas.
- Hepatologists (subspecialty of gastroenterology) diagnose, treat and manage diseases of the liver.
- Interventional radiologists use imaging such as X-rays, CTs and MRIs to navigate small instruments, such as catheters and needles, through blood vessels and organs to treat a variety of diseases.
- Liver transplant surgeons have special training in transplantation surgery. The surgeon replaces a diseased liver with a healthy one.
- Medical oncologists treat cancer with drug therapy and other medications.
- Nutritionists/dietitians help meet nutritional challenges that arise during and after treatment.
- Oncology pharmacists have special training in how to design, deliver, monitor and change chemotherapy for cancer patients.
- Palliative care specialists work to provide physical and emotional relief for cancer symptoms and treatment-related side effects.
- Pathologists interpret the biopsy of the cells, tissues and organs removed.
- Patient navigators/nurse navigators serve as guides through diagnosis, treatment and follow-up; they may also be patient advocates, helping identify barriers to treatment such as the need for transportation or help with copays and deductibles, and access resources to resolve such barriers. Navigators are commonly involved throughout the continuum of care.
- Radiation oncologists treat cancer using radiation therapy.
- Surgical oncologists have special training in performing biopsies and other surgical procedures in cancer patients.
- Other specialists to address other health conditions.