Helping with Follow-up Medical Care
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.
"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:
- 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|
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:
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.
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.