Liver Cancer Survivorship

Even after treatment ends, your cancer journey continues. Many cancer survivors refer to the time after treatment ends as the “new normal.” It may take you a while to readjust to life after treatment. You may wish to make changes in your nutrition and lifestyle to help prevent recurrence. Use these sections to help you navigate your “new normal” and to promote wellness during survivorship.

Follow-Up Care

Follow-up care after completing cancer treatment is very important. Your healthcare team will help you manage long term side effects and watch for any changes such as the cancer spreading or coming back. Your follow-up care plan will depend on your specific diagnosis and treatment. Here are some things to remember about follow-up care:

  • Always go to your follow-up appointments.
    • You will probably have follow up exams every 3-6 months following treatment depending on the stage of your cancer.
    • After some time goes by without a recurrence, your healthcare team will probably recommend checkups only once or twice a year.
    • Follow your recommended screening schedule.
      • Your screening scheduled will depend on the type and stage of your cancer and other aspects of your medical history.
      • Typically a few months after treatment your doctor will order an imaging scan such as a CT scan, PET scan, or MRI to set a new baseline. Your doctor will use this image to compare with future scans to check for recurrence.
      • At most appointments with your oncologist you will have a lab visit first to do blood tests. Your oncologist uses these blood tests to check for tumor markers, protein levels, blood cell counts, and general health.
      • Your doctor will also check to make sure you liver is functioning properly.
      • If you have hepatitis B or C, which may have contributed to primary liver cancer, your doctor will also want to help you manage the infection.
      • If you change your primary care physician, make sure your new doctor has all your medical records and history.
      • Tell your doctor about any side effects.

Some side effects occur after treatment ends. Let you healthcare team know of any and all changes so they can help you manage them effectively.

  • Keep your health insurance if at all possible.

Follow-up care, especially imaging, can be very expensive if you do not have health insurance.

Once cancer treatment is complete it is time to restore and rejuvenate the body by feeding it with the best foods for optimal nutrition. Nutrition status, physical activity, and body weight all play a role in preventing cancer recurrence. Here are some guidelines to follow while adopting a new lifestyle now that cancer treatment is over.

Eat a wide variety of colors of fruits and vegetables every day.
  • Fruits and vegetables contain phytochemicals that fight against cancer. Each color contains a different phytochemical. A wide variety of colors introduces more types of these cancer fighting chemicals into the body.
  • Choose organic varieties when available to limit exposure to chemicals and pesticides. Wash all fruits and vegetables very well.
  • The most important fruits and vegetables to buy organic are those that are conventionally grown with the most pesticides. These are often referred to as the “dirty dozen.”
  • Frozen fruits and vegetables are a great alternative to fresh and are easy to have available when time for shopping is limited.
Choose complex carbohydrates for increased energy.
  • Select complex carbohydrates like whole grains (oats, wheat, brown rice, whole grain pasta) and whole fruits and vegetables.
  • Complex carbohydrates are digested slowly due to their high fiber content, providing sustained energy.
  • Choose grain products that have whole wheat or a whole grain flour listed as one of the first 3 ingredients.
    • Avoid highly processed and refined grains (white enriched flour, baked goods, snack foods, sweets).
    • A serving of whole grain is one slice of bread, ½ cup of cooked rice or pasta, and ½ cup of whole grain cold cereals and oatmeal.
Choose lean protein most of the time.
  • Choose lean proteins that include beans, eggs, white meat chicken and turkey, and fresh fish (not farm raised). When available, select organic and locally farmed. Other good sources of protein are nuts, and tofu.
    • Limit red meat to less than 18 ounces per week. Red meat includes beef, pork, and lamb. For reference, one ounce of meat contains 7 grams of protein. To make sure that you are getting enough protein, aim to eat a source of protein at every meal.
Incorporate good fats into meals and snacks.
  • Eliminate fried foods and eat foods that are high in omega-3 fatty acids such as avocados, fish, and nuts.
  • Avoid trans fats and avoid foods containing partially hydrogenated oils.
Limit sweets and simple sugars.  Avoid artificial sweeteners.
  • Choose fruit to satisfy cravings for sweets. Sweets provide our body with empty calories and no nutritional value.
  • Stevia is a plant-based natural sweetener that is an acceptable alternative to sugar, or artificial sweeteners like aspartame sucralose, and saccharin.
Drink plenty of water.
  • Staying hydrated is essential to rejuvenating the body. Too much caffeine may lead to dehydration.
  • Green tea and white tea are also good beverage options for staying hydrated.
  • Aim for 64 ounces of caffeine free fluids per day. If you are not drinking any water, start slowly and gradually increase water intake.
Eat consistently throughout the day to avoid overeating.
  • Five to six small meals per day eaten every 2-3 hours help to keep blood sugar levels more stable.
  • Smaller, more frequent meals help with weight management by encouraging metabolic rate to increase.
  • Smaller, more frequent meals allow for better absorption of nutrients.
Achieve and maintain a healthy body weight for your height.
  • Eat healthy by following the guidelines on this handout.
    • Consult with a registered dietitian to determine individual energy needs and a realistic goal weight.
    • Monitor food intake and measure portion sizes.
    • Begin to track food intake in a journal.
Exercise
  • If not currently exercising, gradually work toward 45-60 minutes daily. This can be split up into 10 or more minute increments to make it more possible when time is a factor.
  • Be realistic and start slowly. A regular exercise program may help to minimize stress and depression.
  • Choose an enjoyable activity. Enlist a friend or relative as an accountability partner.
Nutrition Supplements
  • Choose food first as the primary source for vitamin and minerals. Ask a registered dietitian for guidance on vitamins, minerals, and other nutrition supplements.
  • Do not rely on supplements for cancer prevention.
Drink alcohol in moderation, if at all.
  • Alcohol is a contributing factor to many types of cancer.
  • Alcohol provides the body with calories but not any nutrients.

Many believe that once treatment ends, the cancer journey is over, but that’s not the case. Many cancer survivors struggle with the fear of recurrence. What if my cancer comes back? What if my cancer spreads? For some, these fears can become overwhelming even years into remission. These fears are completely normal, but there are things you can do to try to manage them.

Take charge of what you can.

You may feel afraid because of the lack of control you have over the situation.  To take back some control in your life, try making positive changes.

  • Talk to a registered dietitian about developing a survivorship nutrition plan. Good nutrition can reduce your chance of recurrence and make you healthier all around.
  • Start an exercise program. Exercising is not only good for your body; it is also good for your mind. Exercising releases endorphins, natural chemicals that make you feel happier. Many people also say exercising helps clear their minds and lower stress. Always talk to your doctor before starting any exercise program.
  • Stay on top of your screenings and checkups.  At the end of your treatment, work out a screening and checkup plan with your oncologist.  What kind of scans or tests to do you need? How often do you need them?
Take a deep breath.

If you feel yourself starting to get worked up, close your eyes, take a deep breath, and count to ten. This may seem like silly or old advice, but taking a second to gather your thoughts can make you feel a lot better.

Try meditation or visualization. Find a quiet, comfortable spot in your home. Take a few moments to yourself to breathe deeply and reflect on the positive things in your life. Think about some of your goals, even simple ones, and imagine yourself reaching them. In the rush of everyday activities, we sometimes forget to just breathe.

Find a hobby.

Hobbies can be a great source of entertainment and can also take your mind off of negative things. Try one of the hobbies listed below or make up one of your own.  Find something that you enjoy and are passionate about.

  • Knitting
  • Cooking
  • Painting
  • Hiking
  • Photography
  • Writing
  • Yoga
Volunteer.

Volunteering can be a worthwhile way to pass your free time and make a difference in your community. Is there a cause you are passionate about, such as education, the environment, or animals? To find a variety of volunteer opportunities in your neighborhood, visit VolunteerMatch.org or Volunteer.gov.

A quick word of caution: For some, volunteering for a cancer support organization may hit too close to home. Consider how it may affect you to be in this environment with constant reminders of your experience. You need to do what is best for you. If you are unsure how it may affect you, volunteer once before committing more time.

Talk about it.

You may find it helpful to talk to someone. It can be especially comforting to connect with other survivors. Hearing other survivors’ stories can show you what you are feeling is normal, and you are not alone. You may also be able to help someone else by sharing your story.  Here are some options for connecting with other survivors:

  • Support Groups
    • Cancer Support Community hosts support groups around the country.
    • Ask your healthcare team about other groups in your area or at your hospital.
    • One-on-One Partnering Organizations
      • These organizations connect you with a fellow survivor. Usually the connections happen via phone.
    • Imerman Angels
    • Cancer Hope Network
    • Survivor Retreats
      • Epic Experience offers outdoor adventure retreats to adults with a past cancer diagnosis. Activities are based on the season.
      • Visit epicexperience.org or call (855) 650-9907.
      • First Descents hosts retreats for young adults (18-39) to learn to rock climb, kayak, or surf.
Educate yourself.

Knowledge is power. Talk to your oncologist about your fear of recurrence.  Here are some questions to ask:

  • What are my chances of recurrence?
  • What can I do to lower my risk?
  • What signs do I need to look for to know if my cancer has returned?

Armed with the answers to these questions you can better understand your situation and minimize fear of the unknown.

If you do face a recurrence, remember that every survivor’s situation is different.  With clinical trials and new medications, there may be many treatment options available. Not all recurrences are equal.

Know what triggers your emotions, and avoid it.

Do movies or TV shows that address cancer upset you? Don’t watch them. Does the sight of the sweatshirt you wore on treatment days bother you? Throw it out or donate to a clothing bank. Do you get especially anxious around scan days? Ask a friend to go to lunch with you.

If you can identify the objects or activities that trigger negative feelings, you can make a special effort to avoid them.

Don’t dismiss your fear.

It is normal and understandable to fear recurrence.  A cancer diagnosis is a scary thing. If you’ve already been through treatment, you know how difficult it can be.  Don’t be too hard on yourself. It is okay to be scared.  It is okay to be upset.  Admitting your feelings can be an important first step to managing your emotions.

Remember what works for other people may not work for you. Try a few different things.  Once you find an activity that makes you feel at ease, be sure to include it in your schedule. Take time for yourself.

If your fear of recurrence becomes overwhelming or interferes with your day-to-day activity, talk to your doctor. You may need individual counseling from a medical professional. Your doctor can make a recommendation for you.

What are immunizations?

Immunizations help your body build a resistance to specific diseases. Most immunizations work by introducing a small, safe amount of the disease to your immune system. This way if you are ever exposed to the disease, your body’s immune system already knows how to fight it. Most immunizations are vaccines given as a shot or series of shots.

Many people receive one-time immunizations when they are children for diseases such as chickenpox. Some immunizations, such as tetanus shots, need boosters to keep them effective. Other immunizations, such as flu vaccines, need to be received annually.

What are the risks of vaccines?

As with any treatment or medication, vaccines can cause side effects. Each vaccine carries risk for different side effects. Most side effects are minor such as pain where you receive the shot and mild fever. There are risks for serious side effects, but vaccines are carefully tested

for safety. In most cases, the great benefits of vaccines outweigh the minor risks. To learn more, visit the Centers for Disease Control and Prevention (CDC) at www.cdc.gov. Talk to your healthcare team about the risks and benefits of vaccines to determine what is best for you.

I’m a cancer survivor; what immunizations do I need?

For cancer survivors, immunizations are especially important because cancer treatments weaken the body’s immune system. Below is the immunizations schedule recommended by the CDC for people with weakened immune systems, such as cancer survivors.

Influenza (flu) - Annually

Tetanus, diphtheria, pertussis (Td/Tdap - One Tdap vaccine with Td booster every 10 years.

Varicella (chickenpox) -Should NOT get vaccine**

HPV vaccine  (women and men -3 doses through age 26

Zoster (shingles - Should NOT get vaccine**

Measles, mumps, rubella (MMR - Should NOT get vaccine**

Pneumococcal (PCV13 - 1 dose

Pneumococcal (PPSV23 - 1 or 2 doses

Meningococcal - 1 or more doses

Hepatitis A - 2 doses

Hepatitis B - 3 doses

Source: Center for Disease Control

*  These vaccines are only for adults who did not get them as children.

** If you received these vaccines before your cancer diagnosis, there is no harm done. In fact, it is good that you are protected from these diseases. If you have not received these vaccines, it is not safe to receive them with a weakened immune system.

If you are planning to travel outside of the United States, check the recommended vaccines for where you are going. You may need additional immunizations.

Always consult with your oncologist before receiving any vaccine.

What else do cancer survivors need to know about immunizations? Influenza (Flu)

If you are a cancer survivor, the CDC recommends getting the annual flu vaccine. However, only get the flu shot; do NOT get the nasal spray version. The nasal spray version contains live viruses so it is not safe for people with a compromised immune system.

Caregivers or anyone living with a cancer survivor should also receive the flu vaccine to lower the risk of infection.

Pneumococcal

There are two pneumococcal vaccines: PVV13 and PPSV23. For cancer survivors, doses of each may be needed. Ask your healthcare team about the best pneumococcal schedule for you.

Meningococcal, Hepatitis A and B

These vaccines are recommended for adults with certain jobs, lifestyles, or other health factors that increase their risk of these diseases. Your healthcare team can tell you if you are at a higher risk.

Varicella, Zoster, and MMR

As shown in the chart above, people with a compromised immune system, such as cancer survivors currently or recently out of treatment, should NOT receive these vaccines.

Why is smoking bad?

Smoking increases your risk for heart disease, stroke, and emphysema. Smoking also increases your risk for a number of cancers, including:

  • Lung
  • Oral
  • Nasal and Paranasal
  • Throat
  • Esophageal
  • Bladder
  • Kidney
  • Pancreatic
  • Ovarian
  • Cervical
  • Colorectal
  • Stomach

If you already have a cancer diagnosis, smoking can increase your risk of recurrence.

Why should I quit?

Quitting smoking has almost immediate benefits. Here are some of the benefits of quitting smoking:

20 minutes - Blood pressure and heart rate drop

12 hours - CO2 levels in blood stream return to normal*

3 months – 9 months - Circulation and lung function improve

1 year - Risk of heart disease cut in half

5 years - Risk of mouth, throat, esophageal, and bladder cancer cut in half

10 years - One-half as likely to die from lung cancer and risk of laryngeal and pancreatic cancer decreases

15 years - Risk of heart disease is the same as a non-smoker’s

Source: smokefree.gov

*If the CO2 (carbon dioxide) levels in your bloodstream are high, your lungs have to work harder to return these levels to normal. When you exhale, CO2 leaves your body.

How can I quit?

The first step is to talk to your healthcare team about the best quitting strategies for you.

With smoking, your body builds up a dependency on nicotine, a chemical found in tobacco. As you quit smoking, your body will go through withdrawals from nicotine. Some common symptoms and side effects of withdrawal include

  • Cravings
  • Feelings of sadness
  • Stress and anxiety
  • Difficulty sleeping
  • Restlessness
  • Weight gain
Here are some tips to help you manage the side effects of withdrawal:
  • With you doctor’s permission, you may wish to use nicotine replacement therapies (NRT).
    • NRTs give you a small, decreasing dose of nicotine without smoking to help you wean yourself off nicotine and minimize withdrawal symptoms.
    • NRTs come in many forms such as gum, lozenges, inhalers, and patches.
    • Some NRTs are available without a prescription, but always talk to your healthcare team first.

Other prescription medications are available to help you quit. Check with your doctor to see if these may be right for you.

  • Tell your friends and family that you are trying to quit.
    • They can support you and hold you accountable.
    • Ask a friend or family member you trust to be your “sponsor.” If you feel the urge to smoke, you can call them to talk until the craving passes.
    • If your friends or family members smoke, ask them not to smoke around you and not to offer you cigarettes. This will only make achieving your goal harder.
    • Join a support group or online support group to connect with other people trying to quit.
    • Change your routine.

For example, if you always have a cigarette with your coffee, find a new morning routine. Try watching the news with your coffee, or replace your cigarette with a healthy snack.

  • Know your triggers and have a plan.
    • What triggers your cravings—stress, food, other people smoking?
    • Avoid triggers if at all possible.
    • If you encounter a trigger, have a plan to keep yourself from smoking such as chewing gum, counting to 10, or calling a friend.
    • If you have a setback, don’t be too hard on yourself. Get back on track as soon as possible. However, do not use a slip as an excuse to start smoking regularly again.
    • Do not use other tobacco products or e-cigarettes as a replacement for smoking.
      • Other tobacco products can also increase your risk for cancer and diseases.
      • E-cigarettes have not been studied enough to know their safety. The chemicals inhaled with e-cigarette use may have their own risks.
Resources for Quitting

Smokefree.gov

Call (800) Quit-Now to connect with your state’s helpline.

Resources

My PearlPoint

At My PearlPoint, a website for adults impacted by cancer, you can find more educational, nutritional, and practical information to help you through your cancer journey. You can also find recipes, videos, survivor stories, and more. Create a personalized dashboard to save all the resources you find in one convenient location. mypearlpoint.org

(877) 467-1936 X 101

guidance@pearlpoint.org

American Cancer Society

For more than 100 years, the American Cancer Society (ACS) has worked relentlessly to save lives and create a world with less cancer and more birthdays. Together with millions of our supporters worldwide, we help people stay well, help people get well, find cures, and fight back against cancer.

www.cancer.org

 (800) 227-2345

National Cancer Institute

A collection of information run by the National Institutes of Health.

www.cancer.gov

(800) 4-CANCER

CanLiv: The Hepatobiliary Cancer Foundation

CanLiv’s mission is to be the catalyst that brings together patients and their families affected by cancer of the bile duct, gallbladder, and liver with doctors, researchers, and partners to create a community that will work together to advance research, improve patient outcomes, and search for the cure.

www.canliv.org

State Medicaid:

Medicare: www.medicare.gov and www.cms.gov

Affordable Care Act: www.healthcare.gov/law/

Hill Burton: http://www.hrsa.gov/gethealthcare/affordable/hillburton/

Your Local Health Department and Local Free Clinics: http://freeclinics.us/clinics/search

The American Cancer Society’s Road to Recovery

The American Cancer Society offers a volunteer-run service called Road to Recovery. This service provides transportation to and from treatment for people who have cancer and do not have a ride or are unable to drive themselves. Because this service is run by volunteers who donate their time and use their own cars, the drivers cannot usually drive long distances. Call (800) 227-2345 to learn how to schedule a ride in your area.

Free or Reduced-Cost Flights

Sometimes getting to treatment also includes having to fly for treatment. Angel Flight is an organization that provides free air transportation for medically necessary trips. They are a group of pilots and volunteers.  You can contact Angel Flight by calling (918) 749-8992 or visiting www.angelflight.com.

Support Groups

Cancer Support Community

-This includes The Wellness Community and Gilda’s Club.

-Visit cancersupportcommunity.org or call (888) 793-9355.

CancerCare

-Visit cancercare.org or call (800) 813- HOPE (4673).