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Facing Forward: When Someone You Love Has Completed Cancer Treatment

  • Posted: 11/30/2010

Helping with Follow-up Medical Care

Meeting with the Doctor
Side Effects to Watch for After Treatment
Long-Distance Caring

Many caregivers are surprised to find that their loved one's recovery takes longer than they thought it would. For some people, recovery can be an ongoing process, involving physical and emotional changes. A lot of emotional support, love, and patience from you and other family members may be needed.

After treatment ends, you may begin to worry about whether the cancer will come back. This is one of the most common fears people have, especially during the first year after treatment. As time goes by, fear of cancer returning may lessen for you, and you may find that you aren't thinking about it as much. Yet even years after treatment, you may find that certain occasions, such as follow-up visits, anniversary of the cancer diagnosis, or even symptoms that may seem similar to when your loved one had cancer, may trigger concern and worry.

This is the time to begin shifting your focus from cancer treatment to follow-up tests and care. Your loved one should ask for a follow-up care plan (see box below). During follow-up care, the patient continues to see the doctors and specialists he saw during cancer treatment. They might recommend certain tests to monitor his health. They will also want to manage side effects from treatment and look for new ones that appear later. You may need to help keep track of information and help with your loved one's choices for care. Being active partners in decisionmaking can help both you and your loved one regain a sense of control that may have been lost during treatment.

At the first follow-up visit, the doctor will suggest a follow-up schedule. In general, people who have been treated for cancer return to the doctor every 3 to 4 months during the first 2 to 3 years after treatment. They then go once or twice a year after that for follow-up visits.

Meeting with the Doctor

"Every time I go with her to a checkup, I think, 'What is it going to be this time?' Every ache and every pain becomes a source of worry. It's been two years now, but still whenever something comes up, you just have to look at each other and say, 'One step at a time.'" - Bill

If your loved one wants you to continue to go with her to doctor visits, ask how you might be helpful. You may want to talk to your loved one about any changes you're seeing in her, no matter how small. These may be:

  • Fatigue
  • Pain
  • Lymphedema (swelling)
  • Mouth or teeth problems
  • Weight changes
  • Bowel and bladder control
  • Menopause symptoms
  • Sexual problems

For more information about these side effects, see Side Effects to Watch for After Treatment.

If you need to learn more, or do not understand, be sure to ask the doctor to explain. It's normal to have questions. Other caregivers have found it helpful to:

  • Talk about ways to follow a healthy diet and lifestyle, if this will be something new. You may even want to talk with the doctor about developing a wellness plan for your loved one and family.
  • Ensure that the patient asks for copies of any new tests or medical records at the time of the visit. Keep these in a folder or notebook, along with a list of medicines she is taking, in case you need them later. In it, include a list of important names and numbers you may need. This may be members of the healthcare team, pharmacists, and insurance contacts.
  • Help keep track of your loved one's medication schedule and prescriptions to be filled.
  • Talk about whether counseling would be helpful. A counselor could help you and your loved one cope with what has happened.
  • Encourage your loved one to keep a "health journal." This can help keep track of any symptoms or side effects that occur between checkups.
The Institute of Medicine recommends that every cancer patient receive a follow-up care plan. For more information, see the NCI fact sheet, Follow-Up Care After Cancer Treatment, at www.cancer.gov/cancertopics/ factsheet/Therapy/followup.

Tips on Coping with Fear of Cancer Returning
  • Learn more about your loved one's type of cancer and recovery and what he could do for his health now. This may give you a greater sense of control.
  • Be open and try to face your emotions. This may help you feel less worried. Expressing strong feelings like anger or sadness may help you let go of them.
  • Try to use your energy to focus on wellness and what you and your loved one can do to stay as healthy as possible. This may help you to feel better about life.
  • Focus on controlling what you can. Try to stay involved in your loved one's health care if needed, keep appointments, and help with lifestyle changes. You may find that putting your life in order makes you less fearful and more in control.

Side Effects to Watch for After Treatment

It may take time for the patient to get over the side effects from treatment. All people recover differently, based on the type of treatment they had and their overall health. If your loved one seems frustrated, upset, or angry, it may help to understand that she may still be coping with some of the same problems that she had during treatment. Some of the most common side effects people report are:

  • Fatigue: Feeling tired or worn out after treatment is one of the most common side effects the first year after treatment. Rest or sleep does not "cure" this type of fatigue. For some, fatigue gets better with time, and for others it may last years.
  • Pain: Your loved one's skin may feel sensitive where she received radiation, or she may have pain or numbness in the hands and feet due to damaged nerves, or she may have pain in a missing limb or breast.
  • Memory Problems: Memory and concentration problems can begin during and after treatment. They do not always go away. If a person is older, it may be hard to tell if the problems are age-related or not. Either way, some people feel that they cannot focus as they once did.
  • Lymphedema (LIMF-eh-DEE-ma): The patient may have swelling caused by a build-up of fluid in the tissues. It can be quite painful. Some types don't last very long, and other types can occur months or years after treatment. Lymphedema can also develop after an insect bite, minor injury, or burn.
  • Mouth or Teeth Problems: These problems include dry mouth, cavities, changes in taste, painful mouth and gums, infections, and jaw stiffness or jawbone changes. Some people also have trouble swallowing. Some of these problems may go away after treatment. Others last a long time, or never go away. Some may develop months or years after treatment.
  • Weight Changes: Some people have problems with weight loss because they have no desire to eat. Others have problems with weight gain. Unfortunately, the usual ways people try to lose weight may not work for them.
  • Bowel and Bladder Control: Some treatments or surgery may cause problems with bowel and bladder control. This may be a total loss of control for some, while others have some control, but have to make lots of sudden trips to the bathroom. These problems are very upsetting for people. People often feel ashamed or afraid to go out in public.
  • Menopause Symptoms: Some women stop getting their periods every month, or stop getting them altogether. For some younger women, their periods may start again, but for others they may not. Common signs are changes in periods, hot flashes, problems with the vagina or bladder, lack of interest in sex, and fatigue and sleep problems. Memory problems, mood swings, depression, and feeling irritable may also occur.
  • Sexual Problems: Sexual problems in the body can be caused by changes from cancer treatment or the effects of pain medicine. Sometimes these problems are caused by depression, guilt, changes in body image, and stress. Some patients lose interest in sex because they struggle with their body image, or because they are tired or in pain. Others are not able to have sex as they did before because of changes in sex organs. Other main concerns people have are symptoms of menopause, and not being able to have children.
These are all common side effects you may want to watch for in your loved one. If he or she is struggling with any of these, you may want to suggest talking to the doctor about ways to get relief. For information on these changes, see the NCI publication, Facing Forward: Life After Cancer Treatment. It can be downloaded from the Web at www.cancer.gov, or ordered by calling NCI's Cancer Information Service toll-free at 1-800-4-CANCER.

Long-Distance Caregiving

After treatment ends, you may not be sure what kind of help is still needed. You may feel like you're a step behind in knowing how your loved one is coping. Yet even if you live far away, you can still give support. You can still be a problem-solver while starting to get back to your own routine.

Caregivers who live more than an hour away often rely on the telephone as their link. But it's hard to track someone's needs by phone. You know that you would rush to their side for a true medical emergency. Other situations, however, are harder to judge. Staying in regular contact by phone or e-mail is important to help lift your loved one's spirits, as well as your own. Talking with her may also give you a sense of how she's coping.

Finding Contacts

Many caregivers say that it helps to explore paid and volunteer support for your loved one if he still needs help. If you have not done so already, try to create a support network of people who live nearby. These should be people who you can call day or night and count on in times of crisis. You may also want them to just check in with your loved one from time to time. People who could not help during treatment might be able to now.

You could also look into volunteer visitors, adult day care centers, or meal delivery. Having a copy of the local phone book for your loved one's area can give you quick access to resources. Checking the white and yellow pages online is useful, too.

Other Tips

  • Discuss what kind of support is still needed.
  • If other family members or friends are visiting, check in with them to get their thoughts on how your loved one is coping.
  • Ask other long-distance friends and family to stay in touch with your loved one by phone calls, cards, or e-mail.
  • If you're feeling out of the loop now that you're far away again, remind your friends and family that you still need support, too.