Cancer Follow-Up Care
Your healthcare team will help you manage long- term side effects of cancer and watch for any changes such as the cancer spreading or coming back. 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.
- 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.
Fear of Cancer Recurrence
Many cancer survivors 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.
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? Education, the environment, 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 cancer 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 cancer 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.
- 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.
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.
Immunizations for Cancer Survivors
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.
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.
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:
- Nasal and Paranasal
If you already have a cancer diagnosis, smoking can increase your risk of recurrence.
Why should I quit smoking?
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
*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 smoking?
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:
- Feelings of sadness
- Stress and anxiety
- Difficulty sleeping
- 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 to Quit Smoking
For more information on survivorship, read the Survivorship Handbook here.