Care After Breast Cancer
What constitutes good care after breast cancer treatment? How often do we need to see our doctors and what screening tests make sense and which doctors do we need to see anyway? There are different opinions about this issue, and one important factor certainly is psychological peace of mind (or, at least, as much peace of mind as you can find). Some women would prefer to never again see a cancer doctor and others wish they could check in monthly. Different physicians and different institutions have different standards of care, but, generally, it goes something like this: After completing radiation or chemotherapy, you fairly soon check back with your medical oncologist (especially if you are having a hormonal therapy, this may be the time that it is first prescribed). The appointments soon become less frequent and, usually, staggered so that you are seeing your surgeon, your radiation oncologist (if relevant), and your medical oncologist twice a year. With the right scheduling, this can mean a visit with someone every two months. Some women prefer to lump them together and stay away from the hospital when possible, but more seem to be reassured by more frequent exams and conversations. The only tests suggested by ASCO are an annual mammogram and, if you are at particularly high risk (usually meaning women who carry a gene mutation or women who have had more than one breast cancer), an annual breast MRI. ASCO specifically recommends aganst blood markers (http://jco.ascopubs.org/site/misc/15.5.2149.pdf), although some doctors and some patients do prefer to receive these tests.
All in all, it can seem like very little is being actively done to monitor a possible recurrence. The truth is (as counter-intuitive as this may be) that it has not been shown to be helpful to find a recurrent cancer a little sooner due to a rising marker or a scan rather than a little later when there is a symptom. It is also true that most recurrences are not found by the doctor at a follow up appointment, but are generally reported by the woman who is experiencing a symptom or a concern.
I like this article from Support Care Cancer. Instead of a lot of medical information, it presents the issues from the survivor's perspective. Per usual, I give you the beginning and a link to read more:
Problems in transition and quality of care: perspectives of breast cancer survivors
Aimee Kendall Roundtree & Sharon H. Giordano & Andrea Price & Maria E. Suarez-Almazor
Purpose We conducted a qualitative study to explore breast cancer survivors' perceptions and attitudes about their current healthcare utilization, screening, and information needs. Methods We completed eight focus groups of breast cancer survivors. We included women, adult survivors, with an initial diagnosis of breast cancer in the year 2000, treated, and without a recurrence as per medical record. To analyze transcripts, we used grounded theory methods, wherein unexpected themes and direct answers emerged from consensus between co-coders.
Results Focus groups included 33 participants, the majority of whom were white (84.8%), college-educated (66.7%), and covered by private medical insurance (75.7%) or Medicare (27.3%). Participants' perceptions and attitudes about care were framed in terms of personal experiences (including facing barriers to screening, feeling in limbo in the healthcare system, having problems with communication with and between physicians, confusion about symptoms, and using self-prescribe remedies), personal attitudes (including strong opinions about what survivorship means, concerns about recurrence, and changes in self-perception and agency), and social influences (including modeling others' behaviors, changes in social life, and listening to family).
Conclusion Survivorship attitudes, recurrence fears, mem- ories, and self-perceptions were influential personal factors in addition to self-efficacy. Solutions such as providing a cancer treatment summary might resolve many of the problems by consolidating and making readily available the numerous medical history and recommendations that survivors accrue over time, switching from provider to provider. Clinicians must also implement communication changes in their interactions with patients to enhance positive attitudes and behaviors, and leverage social influences.