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AS patients: Let’s spit for science in search of genetic clues in prostate cancer

Test now. Why wait?

Howard Wolinsky

Jul 13, 2022

By Howard Wolinsky

AS (active surveillance) patients, the time has come for you to step up and spit for science.

Yes, your slobber and that of others with more advanced prostate cancer (PCa) can help discover new data that might help you and others with PCa but also male and female relations with certain other cancers,

The PROMISE registry (Prostate Cancer Registry of Outcomes and Germline Mutations For Improved Survival and Treatment Effectiveness), a collaboration between investigators at the University of Washington in Seattle and Johns Hopkins in Baltimore, wants you to participate in the study of how genetic variants can affect prostate cancer outcomes.

Channing Paller, MD, a medical oncologist at Hopkins, one of the Principal Investigators, said all comers are welcome, from those with very-low risk lesions, the Sleeping Lions, to those with advanced prostate cancer, the Snarling Tigers.

She told me: “The PROMISE registry is an opportunity for patients, researchers, and physicians to come together to find patients with rare mutations and learn more about their rare mutations. We know a lot about BRCA1 and BRCA2, but we don’t know a lot about ATM, CHEK2, MLH1, and many others.”

Paller, Associate Professor of Oncology and Urology, Department of Oncology, Johns Hopkins University School of Medicine, Baltimore, and Associate Director of Oncology for the Johns Hopkins Clinical Research Network (JHCRN), said the goal is to offer genetic testing to 5,000 patients in search of 500 with pathogenic or likely pathogenic genetic variants in any of the 29 genes PROMISE is looking at. All 29 genes relate to cancer, but 10 are known to be specific for prostate cancer and we are learning more about other genes. Patients will be followed for 15 years.

Register at:

prostatecancerpromise.org

(Did I mention that the otherwise $300+ test is free.)

They’ll send you a test tube to spit into; you return it via mail to a lab, where your DNA will be extracted from your saliva; you’ll then get the results and, if necessary, a chat with a genetic counselor.

You may get news that you are a carrier of a gene that puts you on alert to risks of prostate cancer and other cancers.

Or you’ll be told that you are not a carrier, and just carry on.

Either way, let your children, sibs, and other close kin the results.

Paller said: “Participants may learn about potential trials. They may learn about new research. They may learn about research that they want to share with their friends at their support group.”

“It’s a two-part study. The first part is where everyone is screened through genetic testing, but then we’re only going to follow 500 people very closely. The 4,500 who are screened can tag along and learn through our patient newsletters and updates, but we’re trying to put our arms around the 500 individuals with positive mutations.”

What is the promise of PROMISE?

If you think you’re scot-free with a low-volume Gleason 6 diagnosis, you’re wrong.

Some of you may know Joe Axler, who was diagnosed with low-risk Gleason 6 diagnosis and went on Active Surveillance briefly. He had a DNA test that confirmed what he suspected, he was a BRCA 2 carrier like his father and sister. His sister underwent prophylactic mastectomies to try to head off breast cancer.

Joel underwent a radical prostatectomy, which revealed a previously undetected aggressive prostate cancer. Joel signed up for the PROMISE registry to try to contribute to science.

Read Joel’s first-person story here:

The Active Surveillor

'Wildcard’: A journey of genetics, waiting, frustration, desperation, and, finally, a big decision

(Editor’s note: Joel Axler posed some serious issues for the moderators at the AnCan Virtual Active Surveillance Support Group. Axler, on the surface, appeared to have low-risk prostate cancer. But he had a plot twist—genetic mutations that doctors increasingly are taking seriously in finding a path to treat prostate cancer. Just how ‘active’ should hi…

2 years ago · 2 likes

PROMISE registry participants receive genetic profile information and genetic counseling that can impact treatment options and ongoing updates on prostate cancer.

My mother died young in 1988 at age 66 with two primary cancers, breast and colon plus metastases to her liver. She died a horrible death. I am still haunted by what she told me: “I want to die but I don’t know how.” I have dreams to this day of rescuing her, running an ultramarathon from Chicago to her home in LA and arriving too late,

Doctors duly noted my mother’s cancers in my history when I was diagnosed with prostate cancer. But no alarms were raised about genetics.

But just a couple of years ago, my sister in the Bay Area was diagnosed with breast cancer. Her oncologist raised questions about whether we might have a Lynch syndrome scenario with a grabbag of cancers.

The oncologist tested my sister’s DNA and found no evidence of a Lynch syndrome genetic variant. My sister’s test let me off the hook. For now at least.

Paller said that the large number of patients who will be studied in the PROMISE registry will enable researchers to uncover previously not understood genetic information called genetic variants of uncertain significance.

“We’re going to learn more about these rare mutations. We’re going to follow patients over 15 years and match them to clinical trials around the country. Sometimes it’s hard to find the 1% of people with the rare mutation but if we find those patients and we match them to a target that fits them, we can sort of transform cancer from what used to be a lethal disease into a target we can treat,” she said.

PROMISE has enrolled 1,000 patients with prostate cancer. They need your help.

(Note: Participation at this time is limited to Americans.)

Come on, and spit for science.

Again, register at

prostatecancerpromise.org

Meanwhile, join the ASPI program on diet: “Eat to Beat Prostate Cancer,” at 12p.m. Eastern July 30 featuring Dr. William Li, a famed TED talker on diet and cancer.

Free Registration: www.aspatients.org or go to: https://bit.ly/3t5lFLx

Free prostate-healthy recipes for all registrants.

More info: info@aspatients.org; or DrDavidKingKeller@gmail.com

Stacy Loeb, MD, of NYU Langone, and Justin Gregg, MD, of MD Anderson, recently presented a webinar on diet and other lifestyle factors to the AnCan group. To view, go to: https://us06web.zoom.us/webinar/register/WN_eUvLX0yNSAmRe5b-ST7zeg.

Join Dr. Channing Paller, associate professor of Oncology and Urology at Johns Hopkins University, Sidney Kimmel Comprehensive Cancer Center, and Rob Finch, Director of Urology Medical Affairs at Myriad Genetics as they discuss the impact of genetic factors in prostate cancer and the PROMISE study.

Genetics, the PROMISE Study, and Prostate Cancer: a Town Hall Webinar

July 20, 6:00 p.m. - 7:00 p.m. Eastern Time

Join a ZERO webinar, Prostate Cancer and the Unique Needs of the LGBTQIA+ Community featuring Anne Katz PhD, RN, FAAN, of CancerCare Manitoba, Winnipeg. The program will be held July 27, 2022 at 6:30 p.m. Eastern.