Increase in Contralateral Prophylactic Mastectomy Conversation Online Unrelated to Decision-Making

The paper investigated whether conversations on online breast cancer community contribute to people choosing an aggressive, higher risk surgery.

Background: The increased uptake of contralateral prophylactic mastectomy (CPM) among breast cancer patients remains poorly understood. We hypothesized that the increased rate of CPM is represented in conversations on an online breast cancer community and may contribute to patients choosing this operation.

Methods: We downloaded 328,763 posts and their dates of creation from an online breast cancer community from August 1, 2000 to May 22, 2016. We then performed a keyword search to identify posts which mentioned breast cancer surgeries: contralateral prophylactic mastectomy (n=7,095), mastectomy (n=10,889) and lumpectomy (n=9,694). We graphed the percentage of CPM-related, lumpectomy-related and mastectomy-related conversations over time. We also graphed the frequency of posts which mentioned multiple operations over time. Finally, we performed a qualitative study to identify factors influencing the observed trends.

Results: Surgically-related posts (e.g., mentioning at least one operation) made up a small percentage (n=27,678; 8.4%) of all posts on this community. The percentage of surgically related posts mentioning CPM was found to increase over time, whereas the percentage of *Revision version w/ Markings surgically-related posts mentioning mastectomy decreased over time. Among posts that mentioned more than one operation, mastectomy and lumpectomy were the procedures most commonly mentioned together, followed by mastectomy and CPM. There was no change over time in the frequency of posts that mentioned more than one operation. Our qualitative review found that the majority of posts mentioning a single operation were unrelated to surgical decision-making; rather the operation was mentioned only in the context of the patient’s cancer history. Conversely, the majority of posts mentioning multiple operations centered around the patients’ surgical decision-making process.

Conclusions: CPM-related conversation is increasing on this online breast cancer community, while mastectomy-related conversation is decreasing. These results appear to be primarily informed by patients reporting the types of operations they have undergone, and thus appear to correspond to the known increased uptake of CPM.

R.A. Marmor*, W. Dai, X. Jiang, S. Wang, S.L. Blair, J. Huh, Increase In Contralateral Prophylactic Mastectomy Conversation Online Unrelated To Decision-Making, Journal of Surgical Research. 218 (2017).