Patients & Advocates

Next, in 2016, we led an effort that identified that about 10% of men with metastatic prostate cancer have inherited mutations in the same genes related to DNA damage repair (e.g. BRCA1, BRCA2, PALB2, ATM, CHEK2, and others).  These were not always seen in men who were younger, or who reported that cancers ran in their family. This was important because when there is an inherited or hereditary genes mutation related to DNA damage repair, there are important implications not only for treatment of cancer (e.g. the COBRA study), but also for blood relatives, who may have up to a 50% chance of carrying the same mutation and be an increased risk of cancer. Because insurers and the medical systems were not immediately able to adjust to these discoveries, and because there is a shortage of genetic counselors, we launched the GENTLEMEN study in order to quickly explore alternative strategies to provide this critical testing and information by web and phone to patients with metastatic prostate cancer, free of cost and to anyone with metastatic prostate cancer in Washington State and then expanded to the United States.

This research study provides genetic testing to men with prostate cancer that has spread to other parts of the body (metastatic prostate cancer) and will look for inherited genetic mutations in about 30 cancer-risk genes. The researchers seek to learn about the participant's opinions and concerns about genetic testing, to determine if this is an acceptable way to deliver testing and to potentially help guide the participant's treatment. Neither treatment nor any decisions related to treatment will take place on this study, but researchers will share each participant's genetic testing results with that participant. (NCT03503097)

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After launch of the GENTLEMEN study which provided genetic testing free of cost and to anyone with metastatic prostate cancer in the United States, we realized this was a valuable study for many patients, but there were still people who were not finding out about the importance of genetic testing. Perhaps they lived in a more rural place and did not know about the new information. Perhaps their oncologists did not know. Perhaps they did not have good internet access and/or did not feel comfortable using the internet, or had reservations and questions. We wanted to better understand who might be at risk for being left behind. To help address potential information and access disparities, we launched the GIFTS Study. In this study, we aim to ensure that every single man who has a new diagnosis of metastatic prostate cancer in our cancer center region (and is therefore is registered in our Fred Hutch Cancer Registry) receives a letter and personal phone call of invitation explaining the study in plain language and has the opportunity to undergo genetic testing if they want to. The GIFTS study may help us reach more men, and may also begin to identify if additional barriers to genetic testing for men with metastatic prostate cancer might still exist. The GIFTS study is also there to help men who carry inherited cancer risk mutations provide their male relatives with access to genetic testing since the relatives may also be at risk for prostate cancer. 

This research study invites men with prostate cancer that has spread to other parts of the body (metastatic prostate cancer) identified through the Washington State Cancer Registry to complete genetic testing looking for inherited genetic mutations in about 30 cancer-risk genes. Participants also fill out a survey on their health history and family history of cancer. After receiving their test results, participants who are found to have genetic mutations predisposing to higher cancer risk receive genetic counseling, and their adult male relatives are invited to complete genetic testing as well. The researchers seek to learn about factors that might predict a higher likelihood of having a mutation, to learn how best to facilitate "cascade" genetic testing for at-risk male relatives of men with metastatic prostate cancer who are found to have concerning genetic mutations, and finally, to identify men without a prostate cancer diagnosis but with high risk genetic mutations who may benefit from a more focused screening protocol for prostate cancer. (NCT04254133)

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Finally, the PATROL early detection study allows us to offer men who don’t yet have prostate cancer, but who may be highest risk due to inherited cancer risk gene. These could be the sons, brothers and nephews of our patients from COBRA, GENTLEMEN and GIFTS who are found to have inherited mutations DNA damage repair genes (e.g. BRCA1, BRCA2, PALB2, ATM, CHEK2, and others we are still learning about). Or, they could be men from families seen in our Breast and Ovarian Cancer Prevention and Gastrointestinal Cancer Prevention Clinics. The PATROL study seeks to detect cancer early if it develops by using new methods and technology. Our hope is that early diagnosis and targeted approaches for the cancers that may develop will change the natural history and outcomes for patients with these mutations.

This study investigates ways to detect prostate cancer earlier in men who are at increased genetic risk of developing prostate cancer that forms, grows, or spreads quickly (aggressive). Studying samples of blood, urine, and/or tissue in the laboratory may help doctors further understand the genetics of prostate cancer and help identify ways to detect cancer earlier, thereby improving treatment and methods of early detection in the future. (NCT04472338)

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