Follow Up Care
There have been a number of recent questions,in my groups and individual sessions, about appropriate follow-up care after completion of adjuvant treatment for breast cancer. This topic has been carefully addressed by a number of organizations, and I will begin by referring you to several of those sites: ASCO, LBBC, and ACS all have good position papers. Additionally, the NCI published a report in 2006 that suggests that family doctors/PCPS can provide follow up care to women who have been treated for early breast and do just as well as medical oncologists.
If this statement seems surprising, it will make sense when I remind you that, in fact, once you have completed adjuvant treatment ( some combination of surgery, radiation, chemotherapy, and/or hormonal therapy), everything that can be done to keep you well has been done. The goal after treatment is to try to believe that you are going to stay well and to live your life as though you are doing fine. Doctors, both generalists and specialists, will basically assume that you are well unless proven otherwise. As counter-intuitive as it may seem, women do just as well, and live just as long, if a breast cancer recurrence is identified when it presents itself symtomatically as if it were found a little sooner on an x-ray.
Over the course of my thirty years working in Oncology, I have seen a gradual shift towards fewer tests after treatment is done. Some years ago, women were subjected to annual chest x-rays and bone scans, sometimes supplemented with other scans, to insure that all was well. Over time, doctors learned that these annual exams raised everyone's anxiety, often resulted in further tests which came back normal, and did nothing to keep women alive longer. Many medical oncologists continue to order annual blood tests, but the ASCO recommendation at this time is not to include cancer markers (the CEA or CA 27.29). Why not? These blood markers are not a reliable way to find an early recurrence of breast cancer. Although that does sometimes happen, they often are elevated--resulting in a panic for the patient and a series of scans and x-rays that sometimes show nothing. These are false positives as the markers may be elevated/abnormal for a range of non-cancer reasons. Your oncologist may be checking other things with these blood tests: the CBC (complete blood count, most important during chemotherapy), or liver function tests or others. If some of these numbers come back as abnormal, they, too, may trigger other tests, but there is less anxiety as everyone understands there may be many reasons for the numbers. A decision about blood tests should be a shared one with your doctor. Some women like having markers drawn because they are reassured by a normal answer. Others (like me) would prefer not to hear bad news until/unless it is absolutely necessary and trust, per above, that they will do just as well without undergoing such tests. Talk with your oncologist about this questions: Are you best served by having breast cancer markers (blood tests) drawn or not?
Here is what should happen with good medical follow-up (whether it is provided by a medical oncologist or a PCP). You certainly should have an annual mammogram and, in some situations, an annual Breast MRI. If you have both, they should probably be staggered, so you have something every six months. You should have a good physical exam every six months for a number of years, and this exam should include a thorough conversation about your health and anything that is worrying you. Women generally are followed by their breast surgeon, radiation oncologist, and medical oncologist for a long time. Most are happiest spacing these appointments so they are seeing someone every few months--at least for the first few years.
What should you worry about between appointments? Repeating that the goal for us all is to believe that we are well, I also know that it is impossible not to sometimes worry. Most oncologists practice by the "Two Week Rule." This means that if something bothers you for less than two weeks, don't bother to report it. If it persists, call your doctor. Clearly, you need to use some common sense and good judgment here; an intense or obviously dangerous symptom should never be ignored. Symptoms that may suggest a breast cancer recurrence include enlarged lymph nodes under the arm, above your collar bone, in your neck, bone pain, a cough that does not away, persistent headaches or visual changes. Anything that worries you and that lasts for more than two weeks should be reported to your doctor.
I can promise you that we all have symptoms that scare us and that, most of the time, they go away and don't turn out to be anything worrisome. I can also promise you that, over time, you will regain some confidence in your body, your good health, and will work out a longterm relationship with your doctor (s) that helps you believe that you are well.