According to the National Cancer Institute’s definition of a cancer survivor, “a person is considered to be a survivor from the time of diagnosis until the end of life.” Even after treatment ends, your cancer journey continues.
Many head and neck 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 a recurrence. Use these sections to help you navigate your “new normal” and to promote wellness during survivorship.
Head and Neck Cancer Follow-Up Care
After you finish treatment, you and your oncologist will create a customized follow-up care plan to address lingering or long-term symptoms and screen for a possible recurrence. This plan will be based on guidelines for your specific cancer and may include physical examinations and medical tests, like X-rays, CT scans or blood tests.
You may also benefit from rehabilitation services like:
- Speech therapy to help regain your speech and swallowing abilities.
- Physical therapy to help improve your movement and range of motion.
- Occupational therapy to help you perform activities of daily living.
- Dietary counseling to ensure you eat the right number of calories, vitamins and nutrients.
- Education about caring for a stoma (an opening in your windpipe that allows you to breathe).
- Reconstructive surgery to restore swallowing, speech and appearance.
Head and neck cancer treatment can impact your ability to talk, chew and swallow. You may have difficulty eating certain foods, particularly right after treatment. After surgery for head and neck cancer, some people need to get their nutrition through a feeding tube or their veins.
Talk to your oncologist, speech-language pathologist and/or dietitian about the best ways to meet your nutrition needs.
Here are some nutrition tips to make eating easier if you experience side effects from head and neck cancer treatment:
- Practice good oral hygiene. See your dentist for regular checkups, brush and floss daily, ask if you should use a special type of mouthwash and avoid alcohol-based mouthwash.
- Choose the right foods. Opt for soft, cool or room-temperature foods that are easy to swallow, like pudding, yogurt, cottage cheese and cheese. You can puree food in a blender or dunk hard foods (like bread or crackers) in coffee, tea or water to make them easier to eat.
- Avoid acidic foods (at least temporarily). If you have pain when you swallow or experience mouth sores, avoid irritating and acidic foods like citrus fruits, tomatoes and spices.
- Practice good posture when eating. This can make swallowing easier.
- Take medications as prescribed. Your doctor may prescribe certain medications to make chewing and swallowing more manageable.
- Eat slowly. Take your time when chewing and swallowing.
- Manage other symptoms. If you experience a metallic taste in your mouth and can tolerate acidic foods, eating lemon wedges, pickled foods, vinegar or tart candies can help with this side effect. You can also use plastic utensils. If you experience dry mouth, try tart foods like candies, lemon sorbet and fruit popsicles.
Once cancer treatment is complete, it’s 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 has 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 your exposure to chemicals and pesticides. Wash all fruits and vegetables very well.
- Frozen fruits and vegetables are a great alternative to fresh and are easy to have available when time for shopping is limited.
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 whole-grain flour listed as one of the first three ingredients.
- Avoid highly processed and refined grains, such as white enriched flour, baked goods, chips, crackers and 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, such as beans, eggs, white meat chicken and turkey, and fresh wild-caught fish (not farm-raised). When available, select organic and locally farmed protein sources. Other good sources of protein are nuts and tofu.
- To make sure that you are getting enough protein, aim to eat a source of protein at every meal.
- Limit red meat to less than 18 ounces per week. Red meat includes beef, pork, lamb, veal and venison.
- Limit or avoid processed meats, such as bacon, sausage, salami and deli meats.
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.
- Other healthy sources of fat include olive oil, avocado oil, nut butters and seeds.
- Avoid trans fats and avoid foods containing partially hydrogenated oils.
Choose fruit to satisfy cravings for sweets. Sweets provide our body with empty calories and no nutritional value.
- Limit sweets and simple sugars.
- Avoid artificial sweeteners.
- Stevia is a plant-based natural sweetener that is an acceptable alternative to sugar and 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.
- Gradually increase your intake of caffeine-free fluids (like water) to 64 ounces per day.
Eat small meals throughout the day.
- Try eating five or six smaller meals per day. Or have a "mini-meal" every two to three hours.
- Smaller, more frequent meals help with weight management by encouraging metabolic rate to increase. They also allow for better absorption of nutrients.
- Achieve and maintain a healthy body weight for your height.
Eat healthy by following these guidelines.
- Consult with a registered dietitian to determine your individual energy needs and a realistic goal weight.
- Monitor food intake and measure portion sizes.
- Begin to track food intake in a journal.
- If you’re not currently exercising, gradually work toward 45 to 60 minutes daily. This can be split up into 10-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, such as walking, water aerobics, yoga, dancing, weight lifting, barre classes, Pilates, jogging or swimming.
- Enlist a friend or relative as an accountability partner.
Ask for guidance before taking supplements.
- Choose food first as your primary source of vitamins 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 no 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. 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.
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 in 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 activities, talk to your doctor. You may need individual counseling from a medical professional. Your doctor can make a recommendation for you.
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, which are natural chemicals that make you feel happier. Many people also say exercising helps clear their minds and lowers 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 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 10. 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
In the rush of everyday activities, we sometimes forget to just breathe. Find a quiet, comfortable spot in your home. Take a few moments to yourself to breathe deeply and reflect on the positive aspects of your life. Think about some of your goals, even simple ones, and imagine yourself reaching them.
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.
Here are just a few ideas:
- Trying new restaurants
- Playing an instrument
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? 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.
Join a Cancer Survivors Support Group
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.
- Visit cancersupportcommunity.org or call 888-793-9355.
- Ask your healthcare team about other groups in your area or at your hospital.
- One-on-one partnering organizations
- 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 to 39) to learn to rock climb, kayak or surf. Visit firstdescents.org or call 303-945-2490.
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.
Visit Sarah Cannon’s blog to learn more about head and neck cancer.
Know What Triggers Your Emotions
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.
For cancer survivors, immunizations are especially important because cancer treatments weaken the body’s immune system. Immunizations help your body build a resistance to specific diseases, such as COVID-19, the flu and shingles.
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 a 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). Talk to your healthcare team about the risks and benefits of vaccines to determine what is best for you.
What Vaccines Do You Need?
Always consult with your oncologist before receiving any vaccine. Here are some that your doctor may recommend:
- COVID-19 vaccine. Many cancer experts recommend that both cancer survivors and those actively undergoing treatment receive the COVID-19 vaccine. Ask your doctor if the vaccine is right for you. Caregivers or anyone living with a cancer survivor should also receive the COVID-19 vaccine to lower the risk of infection.
- Flu shot. 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 vaccine. 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. People with a compromised immune system, such as cancer survivors currently or recently out of treatment, should NOT receive these vaccines.
- Travel vaccines. If you plan to travel outside of the United States, check the recommended vaccines for where you are going.