Abstract P5-13-04: Voice of cancer patients: Analysis of patient concerns regarding pregnancy and fertility preservation in patients with breast cancer
Authors: Aggarwal S , Sharma R , Sharma R , Gupta A , singh D , Aggarwal A 
Published: May 2019

Abstract
Breast cancer accounts for one third of all cancers seen in reproductive-age women. Adjuvant chemotherapy regimens used for treatment commonly affect fertility and cause premature ovarian failure. Fertility preservation in young cancer survivors is recognized as a key survivorship issue by the American Society of Clinical Oncology and the American Society of Reproductive Medicine. Many patients share their experiences in online forums, which contain millions of freely shared messages that can be used to analyze concerns regarding pregnancy and fertility preservation. However, this data is unstructured and difficult to analyze. We organize it using methods from Big Data Science (BDS) and analyze it by creating a Decision Support System (DSS) and an interface that can be used by patients and by providers to understand concerns of these patients.
Method:
We collected 5.8 million unique messages (by 170,000 users) from 20 unrestricted breast cancer forums that provide clinically relevant information. We next built custom ontologies for breast cancer, treatment, pregnancy and fertility and supportive therapies. We then created a DSS using methods from BDS, including topic modeling, information retrieval, and natural language processing to extract relevant information from these messages.
To use this system, a user provides disease-related parameters, key questions and the treatment. The DSS then gives messages discussing a similar cohort of patients that have similar parameters and are going through similar treatments.
Results:
Of 170,000 patients, only 5,109 patients reported their age and 1,604 patients reported their age below 45 years. 2,378 patients posted 6,377 messages discussing pregnancy and fertility related issues during Breast-Cancer treatment, and of these, 907 reported their age below 45.
Their specific concerns included:
· Does pregnancy increase the risk of recurrence (31 messages from 24 patients)
· Chances of successful pregnancy in patients who are 30 to 39 years old
· Risk of birth and genetic defects (23 messages from 21 patients)
Fertility options being discussed:
· Freezing embryos, eggs, or ovarian tissues. (169 messages from 138 patients)
· Artificial Insemination, hormone assisted pregnancy, or ovarian stimulation- in vitro fertilization (55 messages from 43 patients)
· Use of GNRH to preserve fertility during chemo with Lupron (291 messages) and Zolodex ( 391 messages)
Other findings include:
· 893 messages talked about stopping tamoxifen early, mostly within first 1.5 to 3 years so as to try the pregnancy option and 116 patients said that they stopped tamoxifen early.
· 83 patients talked about a successful pregnancy. Only 40 patients discussed getting fertility experts involved early.
Conclusion:
· This interactive system reliably provides meaningful insights from patient's point of view to their treatment, their concerns, and suggestions for supportive therapy. It also gives insight into unmet needs where more resources and research should be focused.
· Fertility preservation is a major concern in pre-menopausal patients. It should be addressed early on to prevent patients taking harmful decisions such as cutting short their hormonal therapy.
· Fertility counseling seems to be underutilized.
Citation Format: Aggarwal S, Sharma R, Sharma R, Gupta A, singh D, Aggarwal A. Voice of cancer patients: Analysis of patient concerns regarding pregnancy and fertility preservation in patients with breast cancer [abstract]. In: Proceedings of the 2016 San Antonio Breast Cancer Symposium; 2016 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2017;77(4 Suppl):Abstract nr P5-13-04.