Wassersug et al previously reported that gay and bisexual prostate cancer survivors had significantly lower Gleason scores (GSs) at diagnosis than heterosexual prostate cancer survivors (P < .05)¹. The authors speculate that gay and bisexual patients may “experience more intensive screening for disease” resulting in lower scores at diagnosis; although this is contrary to published data on the topic.²

In 2020 we reported results from Restore-1, an online, cross-sectional survey study of gay and bisexual prostate cancer survivors.³ While a high proportion of participants reported GS < 6, patient interviews demonstrated nearly all scores reported as 2-5 were inaccurate. Several participants reported that they had provided a sub score rather than their GS sum. Others provided a guess without a clear memory of typical GS ranges. We hypothesized that allowing participants to choose their sum score with sub scores from a list would result in increased similarity of GSs between gay and bisexual men (GBM) and heterosexual participants.

Restore-2 was a 24-month randomized controlled trial studying the effects of a sexual and urinary rehabilitation program tailored for sexual minority prostate cancer patients.⁴ Patients were randomized to an online rehabilitation program tailored to GBM who have undergone prostate cancer treatment or traditional cares. Data collection was performed with online surveys at 6-month intervals. As part of our baseline data collection, we asked participants to self-report their GSs using the phrasing proposed in our 2020 article: At the time of your initial prostate cancer diagnosis, what was your Gleason score? Response options included: 3 + 3, 3 + 4, 4 + 3, 4 + 4, 5 + 4, 4 + 5, 5 + 5, other, and don’t know/don’t remember.

Baseline data collection, which included the collection of GS information, occurred in 2019. Inclusion criteria included self-identifying as gay, bisexual, or a man who has sex with men; having U.S. residency; a diagnosis of prostate cancer; and receiving/pending treatment for prostate cancer. In all, 401 participants were recruited into in the study.

Sample characteristics are reported elsewhere.⁴ Most study participants had a bachelor’s degree or higher and had an income >$75,000 (Table 1). About half were partnered/married. For prostate cancer treatment, 58.1% underwent surgery only, 19% radiation only, and 22.9% surgery and radiation and/or systemic treatment. The average time since participant prostate cancer diagnosis was 5.3 years, and the average PSA at diagnosis was 9.7.

The most reported Gleason score sum was 7 (42.4%) followed by 6 (17.2%; Table 2). But 114 (28.4%) stated that they did not know/remember their score. Simple logistic regression was used to estimate the odds ratio of responding “don’t know/don’t remember” for GS by time since prostate cancer diagnosis. For each year after prostate cancer diagnosis participants had a 13% higher odds of not knowing/not remembering their GS (OR: 1.13, 95% CI: 1.08-1.18).

Compared to our 2020 findings from Restore-1, our new question design has resulted in a significant increase in those not knowing/not remembering (Restore-2: 28.4% vs Restore-1: 16.1%). We would attribute this to more specific answer choices leaving less room for guessing. Only 1 patient had a Gleason score< 6 (0.3%) compared to 11.9% in Restore-1. The average Gleason score was 7.03 in Restore-2 vs 6.48 in Restore-1. The median Gleason score was 7 in Restore-2 and 7 in Restore-1. When compared to the nonheterosexual cohort from Wassersug et al we had a higher percentage of participants with GS7 (Restore-2: 42.4% vs Wassersug et al 39%) and less with GS6 and below (Restore-2: 17.5% vs Wassersug et al 34%).¹ Compared to the heterosexual cohort from Wassersug et al our results are similar, with the most common GS in both being 7 (42.4% in Restore-2 vs Wassersug et al 39%).

Our improved GS question design appears to result in answers more consistent with published norms and with the standard of care, emphasizing treatment of disease at a GS of 6 or higher. These findings suggest that how the question was worded in Wassersug and Restore-1, not over screening, likely influenced their results. It should be noted that our cohort is highly educated and majority White, suggesting an increased access to prostate cancer screening.^5,6 Because Restore-1, Restore-2, and Wassersug et al were all online studies, we would caution using these findings to inform surveys being administered in person or over the telephone. Recall bias may impact the accuracy of these survey results, but we would not expect recall bias to be any more significant in GBM versus heterosexual men. Restore-1 and Restore-2 occurred after the 2012 U.S. Prevention Task Force recommendation against prostate cancer screening while Wassersug et al was before. This might result in the Restore studies having a higher Gleason score at diagnosis.⁷