Table 1.
Characteristics of the study participants (n=12)
| Participant ID and year of diagnosis | Diagnosis | Sought a second opinion (or more) |
Management received* | When (and how) did you become aware of the concept of overdiagnosis? |
| P1 2015 |
DCIS | Yes | Lumpectomy Endocrine (hormone) therapy Currently on tamoxifen |
Unsure about timing in relation to diagnosis (personal research, media, the internet) |
| P2 2016 |
DCIS | No | Lumpectomy Physiotherapy for lymphatic cording Gene profile test |
After receiving treatment (personal research, the internet) |
| P3 2019 |
DCIS | Yes | Only diet and lifestyle changes | After diagnosis (personal research) |
| P4 2018/2019 |
DCIS | Yes | Lumpectomy | After diagnosis (medical professional, personal research, the internet) |
| P5 2013 |
Breast cancer | Yes | Mastectomy Endocrine (hormone) therapy |
After diagnosis (personal research, the internet) |
| P6 2010 |
DCIS | Yes | Lumpectomy Gene profile test |
After diagnosis (personal research, the internet) |
| P7 2019 |
DCIS | Yes | Active monitoring (personal choice) | After diagnosis (personal research, media, family/friend/colleague, the internet) |
| P8 2016 |
Breast cancer | Yes | Lumpectomy Radiotherapy (TARGIT-IORT)† Endocrine (hormone) therapy Gene profile test Chemotherapy Currently on tamoxifen |
After diagnosis (medical professional, personal research, conference lecture) |
| P9 2012 |
Breast cancer | Yes | Lumpectomy Radiotherapy (TARGIT-IORT)† |
Before screening (personal research, media, family/friend/colleague) |
| P10 2019 |
DCIS | Yes | Lumpectomy | After diagnosis (breast, ovarian cancer education centre) |
| P11 2004 |
Initially DCIS; invasive cancer found after initial lumpectomy | Yes | Lumpectomy Mastectomy |
After receiving treatment (personal research) |
| P12 2013 |
DCIS; Invasive cancer after 3 years of no treatment |
Yes | Active monitoring for 3 years. Then mastectomy. Then radiation and chemotherapy (to treat metastatic disease)‡ | After diagnosis (personal research, family/friends, internet, medical journals) |
*Self-reported. Gene profile test (eg, MammaPrint, Oncotype DX).
†TARGIT-IORT—targeted intraoperative radiotherapy during lumpectomy (no further postoperative radiotherapy).
‡Participant deceased.
DCIS, ductal carcinoma in situ.