Neurological (Central Nervous System - CNS) Cancer Survivorship

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, MRIs or blood tests.

You may also benefit from rehabilitation services like:

• Speech therapy to help regain your speech abilities, which is also suggested prehab (prior to treatment)
• Occupational therapy to help you perform activities of daily living, which is also suggested prehab (prior to treatment)
• Counseling with a social worker to help you cope with the emotional and social effects of a cancer diagnosis and treatment
• Neuropsychological testing to check for mental and behavioral changes from the tumor and treatment
• Medications to improve memory or decrease fatigue

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. 
• 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 for increased energy.

• 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.
  • 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.

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 these guidelines:
  • 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. 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 OK to be scared. It is OK 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:

• Knitting
• Cooking
• Painting
• Hiking
• Photography
• Writing
• Yoga
• Reading
• Traveling
• Trying new restaurants
• Playing an instrument
• Baking
• Gardening
• Singing

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? 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
  • These organizations connect you with a fellow survivor. Usually, the connections happen via phone.
  • Imerman Angels: Visit imermanangels.org or call 877-274-5529.
  • Cancer Hope Network: Visit cancerhopenetwork.org or call 800-552-4366.
• 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.

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.

Visit Sarah Cannon’s blog to learn more about neurological (CNS) 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.