One of my favorite patients is a lovely Bostonian transplant to New York, a woman who has been cured of her early stage breast cancer but who worries about her health—from her lipid levels to her not-so perfect bladder suspension 30 years ago. When she comes in for follow-up, she always brings me a thick file of all of her interim health reports. She takes her job as a patient very seriously and routinely follows-up. Does she need to, so religiously? And what exactly do I do for her during follow-up?
Follow-up cancer care involves regular medical checkups that include a review of a patient’s medical history and a physical exam. Follow-up care may include imaging procedures (methods of producing pictures of areas inside the body), endoscopy (the use of a thin, lighted tube to examine the inside of the body), blood work, and/or other lab tests.
Follow-up care is important because Follow-up care visits are important to identify changes in health, to help in the prevention or early detection of other types of cancer, to address ongoing problems due to cancer or its treatment, and to check for physical and psychosocial effects that may develop months to years after treatment ends. It can spot recurrence (the return of cancer in the primary site) or metastasis (the spread of cancer to another part of the body). In fact, at one follow-up visit, my patient’s unusual “rash” that had developed across her chest turned out to be a skin recurrence. This is not the normal follow-up finding, but without follow-up, things can be missed.
What should patients tell their doctor during follow-up visits?
During each visit, patients should tell their doctor about:
- Symptoms that they think may be a sign that their cancer has returned
- Pain that bothers them
- Bothersome or new physical problems that interfere with daily life. This can be new fatigue, difficulty with bladder, bowel, or sexual function, and weight loss or gain.
- Medicines, vitamins, or herbs or new “treatments”
- Emotional problems they are experiencing, such as anxiety or depression, concentration or memory changes, even trouble sleeping
- Changes in their family medical history, including any new cancers
It is important to note that cancer recurrences are not always detected during follow-up visits. However, patients often notice changes that physicians may not be able to detect easily. Having a good relationship and open dialogue brings issues to the surface much easier. Some new “problems” are nothing to worry about, but others can be serious, so let your doctor know so that he or she can determine whether the problems are related to the cancer, the treatment the patient received, or an unrelated health issue.
How Are Follow-up Care Schedules Planned?
Many patients feel that they don’t want to return to the hospital or doctor’s office for follow-up because it brings back bad memories. But the follow-ups are very important to long-term health. The frequency and nature of follow-up care is individualized based on the type of cancer, the type of treatment received, and the person’s overall health, including possible treatment-related problems. In general, people return to the doctor for follow-up appointments every 3 to 4 months initially and then less frequently after that.
When planning a follow-up care schedule, patients should consider who will provide the follow-up care (often their “favorite” of all their doctors) and who will provide routine medical care for other problems. Regardless of with whom they like to follow-up, no doctor should be ignored from the schedule. If insurance restricts follow-up care physicians to a certain approved list, call and request the physician who knows you best.
Every Cancer Survivor Should Have a List of the Following:
- What exactly was the diagnosis?
- What treatments (radiation and surgical procedure) and drugs have I been given?
- What are the expected short terms and long term side effects that I should expect?
- What are the symptoms of recurrence?
- What is my follow-up schedule?
- Are there support groups I can join?
- Did I develop any allergies or have bad reactions to new drugs?
Many patients find it helpful to write these questions down and to take notes or tape record their discussions with the doctor to refer to at a later time. All patients should keep a list of doctors, nurses and social workers with phone numbers, addresses and email addresses.