Abstract P2-14-14: Voice of cancer patients (VoCP): Analysis of experiences of cancer patients undergoing breast cancer surgery
Authors: Aggarwal S , Sharma R , Bhoemick J , Singh M , Aggarwal A 
Published: May 2019

Surgery is an important part of breast cancer treatment. Most patients either go for mastectomy or lumpectomy + radiation (i.e., breast conserving surgery, BCS). It is well known that mastectomy and BCS have equal long-term outcomes, and more patients are choosing to get breast reconstruction.

In this study, we analyzed experiences, concerns, complications and side effects in patients who have undergone breast cancer surgery and who shared their views on various online forums. Such forums have millions of freely shared messages and are rich sources of such information. However, this data is unstructured. We used our automated system, VoCP, that used techniques from Big Data science and artificial intelligence (e.g., deep learning, topic modeling, information retrieval, natural language processing) to analyze concerns and experiences of patients undergoing breast cancer surgeries.

Methods: We collected 5.5 million messages from 174556 distinct users in 21 unrestricted breast cancer forums. We built specific ontology for different surgeries, reconstruction, side effects and sentiments and used our system, VoCP, to extract relevant information from these messages.

Results: 52172 users shared 307966 messages regarding surgery and their views are summarized below.

Lumpectomy (BCS):

· 25850 users provided 98499 messages

· 15771 users had lumpectomy and shared 50390 messages

· 3760 users shared 6322 messages with complications

· 2760 users mentioned need for additional surgery

· 1447 users mentioned satisfaction with the outcome whereas 117 were dissatisfied

Mastectomy:

· 37544 users shared 198494 messages

· 22716 users had mastectomy and shared 94595 messages

· 5065 users shared 8983 messages regarding complications

· 2730 patients expressed satisfaction with outcome whereas 286 patients were dissatisfied

Reconstruction:

· 23164 users provided 113568 messages regarding reconstruction

· 9850 users had reconstruction and shared 32472 messages

· 1904 users shared 2734 messages with complication

· 1982 users had immediate reconstruction; 353 users mentioned delayed reconstruction

· 2686 users had autologous tissue reconstruction and 3105 repot implant reconstruction

· Type of Autologous Reconstruction reported : 759 TRAM flap, 296 Diep flap, 820 fat grafting, 108 Latissimus Dorsi flap, 89 SGAP Flap/hip Flap

· 418 users expressed satisfaction whereas 40 were dissatisfied with outcome

Complications reportedComplicationsReconstruction #Lumpectomy #Mastectomy#Overall#Scars1071,5051,4163,028Pain7101,4104052,525Infection2823106521,244Necrosis22951167447Numbness35145369549Lymphedema80136334550Lumps60115196371Seroma56222462740Swelling83290385758Frozen Shoulder3783151271Bleeding 445599Hematoma 178139317Itching/Rash 130253383Anxiety 82145227Blood Clot  6464Bruising  6060Drainage  5454

Conclusions:

· Despite reports of equal long term outcomes between BCS and mastectomy, more patient had mastectomy.

· Scar issues and pain is the most common complication from any surgery.

· Most patients have expressed satisfaction from their chosen surgery.

· VoCP reliably provides meaningful insights from the patient's point of view; it also gives insight into unmet needs where more resources and research should be focused.

Citation Format: Aggarwal S, Sharma R, Bhoemick J, Singh M, Aggarwal A. Voice of cancer patients (VoCP): Analysis of experiences of cancer patients undergoing breast cancer surgery [abstract]. In: Proceedings of the 2018 San Antonio Breast Cancer Symposium; 2018 Dec 4-8; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2019;79(4 Suppl):Abstract nr P2-14-14.