Study: Males with prostate cancer share positive experiences with genetic testing

What is this study about?
Researchers used the PROGRESS registry research study to collect information from men with prostate cancer who chose to have genetic testing for an inherited mutation (germline testing).

Men were asked about their experience with the testing process, including: 

• how they felt before and after getting their results.
• whether the process was clear.
• whether the results helped them understand their health risks.

Why is this study important?
Between 9-17% of men with prostate cancer have an inherited mutation in a hereditary cancer gene. Most studies report that rates of mutations are higher among men with young-onset cancer or aggressive, locally advanced or metastatic disease.

Genetic testing can:

• provide important insights into treatment options, targeted therapies and eligibility for clinical trials.
• help blood relatives understand their own risk.
• inform risk estimates, risk reduction and early detection for prostate and other hereditary cancers.

For men diagnosed with prostate cancer, national guidelines recommend genetic testing in these situations:

• Diagnosed at age 55 or younger
• Metastatic or very high-risk prostate cancer
• Ashkenazi Jewish ancestry
   

Testing may also be recommended for those with low-risk prostate cancer or those who have not been diagnosed with prostate cancer but testing is warranted based on their personal or family history of cancer.

You can learn more about genetic testing for prostate cancer here.

Study findings

This study looked at 414 men who filled out a survey about their experience with genetic testing for prostate cancer.

• Most of the men in the study were white (88%).
• Three in four men (75%) said they had a close family member—a parent, sibling, child, grandparent, aunt, uncle or cousin—who had cancer.
• About one in four (25%) said they had Ashkenazi Jewish ancestry.

Among participants who responded about their genetic testing results, about 28% reported having a gene mutation.

Overall participant experience

Patient-reported experiences with genetic testing for prostate cancer were generally positive.

• Most participants reported high satisfaction with the genetic counseling and education that they received before testing.
• Most felt comfortable with their decision to have genetic testing (reporting low-to-moderate conflict about their decision)

Attitudes toward testing were favorable. Participants rated testing as more beneficial than harmful, important, a good thing and moderately pleasant.

• Most felt genetic testing is worth it.
  • Most men said the experience was positive and helped them understand their prostate cancer risk better.
• Many felt anxious before genetic testing.
  • This was common and expected. The results suggest that feeling worried before testing did not necessarily mean testing would be a bad experience. Many men felt more in control once they had test results.
• Most felt that genetic testing can reduce uncertainty.
  • Among those who felt worried before testing, many felt reassured afterward because they had clearer information.
• Most believed genetic testing could help guide decisions.
  • Results can help patients and their care team make more informed choices about treatment options, screening plans and whether family members might also benefit from testing.

Key study results at a glance

What was measured	What the results showed
Satisfaction with pretest education/counseling	Very high satisfaction with pre-test counseling and education (average score: 27 out of 30).
Decisional conflict	Low to moderate uncertainty when deciding about testing.
Attitudes toward testing	Strongly positive overall (participants rated testing as beneficial, important and a good thing).
Pretest information received	24% of participants said they received no information before testing.
How men learned about testing	About half (47%) met with a genetics professional, either in-person, by phone or via telehealth. Others learned through their doctor (21%), websites (215) or videos (11%).
Genetics knowledge	Moderate understanding of genetics (participants answered 51% of the questions correctly).
Sharing results with family	90% of participants shared or planned to share results with family members.
Sharing with clinicians	73% of participants shared or planned to discuss results with a doctor or clinician.
Notable associations	Phone-based counseling was linked to higher satisfaction and less uncertainty about the decision to test.
Understanding results	Some confusion about results (about 78% of participant-reported results matched official reports).

 

The registry also highlighted gaps in how well men were prepared for and understood genetic testing. Nearly 1 in 4 respondents said they received no information before testing.

Overall, knowledge of cancer genetics was moderate (about half of the participants answered the questions correctly). Most men (90%) intended to share or had shared results with family, and about 75% intended to discuss or had discussed results with their primary care doctor.

Researchers found that phone-based genetic counseling was associated with higher satisfaction and lower decisional conflict. Asian American participants reported lower satisfaction and higher decisional conflict than white participants. However, their were few Asian Americans in the study and so these results need further study. Finally, what men reported differed from their official test results. Overall agreement was 78.0%, underscoring the need for clearer communication of results and supportive resources after testing.

Overall, patient-reported outcomes suggest that germline testing for prostate cancer is generally well-received and can help men better understand their risk and make informed health care decisions.

What does this mean for me?
Most men in this study felt genetic testing was worthwhile and were satisfied with the process, but some did not get enough information beforehand, and some misunderstood their results.

Before having genetic testing, it is important to ask what the test can and cannot tell you. It is also important to review your results with your care team or a genetics professional, and ask how your results may affect your family members.

Genetic testing can be helpful but getting clear information before and after testing is essential.

FORCE helped recruit study participants, and a FORCE staff member, Sue Friedman, DVM, was an author.

Reference
Loeb S, Scott K, Gross L et al. Patient-reported outcomes from males regarding germline testing for prostate cancer: Results from the PROGRESS registry. JCO Precis Oncol. 2025.

Disclosure: FORCE receives funding from industry sponsors, including companies that manufacture cancer drugs, tests and devices. All XRAYS articles are written independently of any sponsor and are reviewed by members of our Scientific Advisory Board prior to publication to ensure scientific integrity.

Share your thoughts on this XRAY review by taking our brief survey. 

posted 5/26/26

• Should I have genetic testing?
• I tested positive for an inherited mutation. How might this affect my treatment?
• I tested positive for a genetic mutation but have not had prostate cancer.  How will this impact my screening and risk-reducing strategies?
• How do I talk to family members about my test results?