On October 6th, we had Sanoj Punnen, MD (Co-Chair of the Genitourinary Site Disease Group at the Sylvester Comprehensive Cancer Center, University of Miami, Miller School of Medicine) give a talk to our AS group titled “The Current State of Active Surveillance and How Active It Needs to Be”
Dr. Punnen said MRIs are playing an increasing role in diagnosing prostate cancer. He said MRIs must be performed before biopsies to target lesions.
“Get an MRI before a biopsy”, he stressed. ”MRI more likely do a better job of finding lesions appropriate for active surveillance.”
He said genomic and genetic testing can provide reassurance that AS is a safe path for individual patients.
He said he has long preferred transperineal biopsies over the so-called “gold standard” transrectal biopsies that carry a risk of deadly and disabling sepsis.
Dr. Punnen said if the MRI “looks good,” biopsies may need to be performed every three to five years rather than the annual biopsies that used to be performed in AS.
“One protocol will not fit all. Some need intense follow-up but some don’t,” he said.
Watch here:
Slides will be posted when available.
For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
On September 29th, we hosted the webinar “Prostate Cancer – Active Surveillance and More…Past, Present, and Future“.
Featuring Laurence Klotz, MD, a pioneer in developing active surveillance and other areas dealing with prostate cancer, told a webinar about his journey as a urology researcher at Sunnybrook Health Sciences Center in Toronto. With over diagnosis and overtreatment of prostate cancer in the 1990s with the introduction of screening PSA testing, he and his colleagues set out to develop a new strategy of close monitoring of men with low-risk Gleason 6 prostate cancer.
He sees rapid advance of introduction of highly accurate “liquid biopsies” that focus on DNA shed in urine by tumors. He sees great potential in focal therapy.
Watch it all here:
Special thanks to Myovant Sciences – Pfizer, Foundation Medicine, and Advanced Accelerator Applications for sponsoring this webinar.
We apologize, but slides are not available for this webinar.
For information on our peer-led video chat PROSTATE CANCER VIRTUAL SUPPORT GROUPS, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
Through its CDMRP — Congressionally Directed Medical Research Programs — one of the largest US funders of medical research is the Department of Defense. It will take another blog post to learn how this came about (volunteers??), but they have multiple programs for many conditions including multiple cancers … you can check the complete list at https://cdmrp.army.mil/researchprograms. Attend any gathering of patient advocates, and you are likely to find ‘Consumer Reviewers’ for one budget or another.
AnCan has several reviewers, and not just for prostate cancer. One of our PCa group regulars just finished his maiden stint reviewing grant requests for the 2022 $100 million PCa allocation, making the CDMRP the country’s second largest funder of prostate cancer research. Ben Nathanson’s qualifications …. well, he has prostate cancer, participates in AnCan groups, and likes reading scientific papers. No PhD or MD required.
Len Sierra is a seasoned Consumer Reviewer and recommended Ben as a Consumer Reviewer. Consumer reviewers sit on a panel alongside scientists and clinicians, and have an equal vote in who gets funding. They’re asked to read certain proposal pages, not the entire thing. But if you’re the right sort of person for this job, you’ll want to try reading it all.
PCRP is always looking for reviewers. To learn more, contact Melissa Flathmann, Melissa.Flathmann@gdit.com. The Prostate Cancer Research Program’s web page is https://cdmrp.army.mil/pcrp . In Ben’s own words, here’s a little more about his experience:
I just helped review grant proposals for the second-largest source of prostate cancer research funding in the United States. They ignored the fact that I’m not a doctor and haven’t studied biology since high school. They wanted me for my body.
No request gets a dime until it’s been voted on by a consumer reviewer. “Consumer” in this case means you have prostate cancer or have had prostate cancer or are a caregiver for someone with prostate cancer. It’s not enough just to want prostate cancer.
My agency wasn’t NIH (the top funder); it was the Department of Defense, which quietly oversees funding for a number of civilian health programs. More than $100 million is budgeted for prostate cancer research in the coming fiscal year.
The Peace Corps liked to bill itself as “the toughest job you’ll ever love.” Although this is a different arm of government, I too was assigned to be a cultural ambassador to a developing region where they speak a foreign language. Every fellow reviewer was a scientist, a clinician, or a statistician. For every proposal, each of us, in our own language, drafts a critique, gets a turn to speak, and gets an equal vote.
As with the Peace Corps, ditto on the tough, ditto on the love. A consumer reviewer need only read selected pages of the proposal, including an Easy Reader page (“Lay abstract”) prepared just for you. But — personal view — you take this job to stand with the scientists at the edge of research, and if you don’t take the effort to read it all, all you’re seeing is the sales pitch. The process — it’s about six weeks — leaves you breathless. You’ve geeked with the geekiest.
They’re always looking for bodies like yours. Beyond disease qualifications, somebody from a patient-advocacy organization — such as AnCan — needs to write a letter of nomination. I was wildly fortunate that Len Sierra has been doing DoD reviews for years; I sent him my resume so he’d know I really am as geeky as I look, and he wrote me a lovely letter. Len, you got me a ticket to the edge of cancer discovery, and I can’t thank you enough.
On September 1st, we had Aurora Esquela Kerscher, PhD (Associate professor of microbiology and molecular cell biology and a prostate cancer researcher at Leroy T. Canoles Jr. Cancer Research Center) offered strategies to help laypeople understand medical research articles.
Laypeople may want to read medical journals to find out the latest research in the media, including findings that might impact their care. Dr. Kerscher said it can be hard to track down and expensive to obtain papers. She said Google Scholar at https://scholar.google.com/ and PubMed.gov can lead to pertinent papers. ResearchGate.net can help link people to authors, who might be willing to send interested parties their papers.
In this presentation, Dr. Kerscher gave an anatomy of a research paper, focusing on a new study on how exercise can help prostate as well as cardiac health in men on active surveillance.
She also provided a step-by-step guide on how to quickly read/skim a research paper.
“Ask yourself – WHAT IS THE BIG QUESTION?”
–What problem is being addressed?
–Then ask yourself – Why should I care?
Her final helpful tips were:
• Read slowly, take notes as you read,
• Question assumptions, the importance of the problem.
• Write questions to track what you don’t understand. Write down and translate jargon in Google.
• Sometimes what is not in the paper is more important than what is in it.
• Is there something the authors have overlooked?
• Don’t let ideas or design details pass until you understand them.
• Do not assume the paper is correct, even if published in a prestigious peer-reviewed venue
Watch this extremely information presentation here:
To view the slides from this presentation, click here.
For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
On August 25th, we had Shelby Hofer!
Shelby is an award-winning actress, writer and director, and the Co-director of Atlanta-based PushPush Arts (formerly PushPush Film & Theater) where she develops distinctive opportunities for artists to take risks, explore new ideas and collaborate. In addition to her noted stage and film work at PushPush, she has appeared on many stages locally, nationally, and internationally. In Atlanta, her many stage performances include seven productions at Horizon Theater, including the critically acclaimed solo comedy, Bad Dates by Theresa Rebeck. Her work also includes film, commercials, multimedia, teaching, writing, directing and stand up comedy. Her 2009-2011 performances of the solo show 101 Humiliating Stories garnered numerous awards including one of the Top 50 Shows of the Decade and a Best Actress award from Creative Loafing Atlanta in 2010.
She shared scenes from her one-woman show, High Risk, Baby! a comedy about the child within the mother, and Shelby’s personal voyage from infertility to motherhood, told from the perspective of both her 8-year-old and adult self. During the 75-minute autobiofictional ride, Lenora is on a mission, but her not-so-inner child is bursting with irreverent questions about DNA, ADD, quantum physics, boners & babies — where they come from, how they get here, and mostly, how she can get one. With hilarious and maddening advice from her sex-ed teacher, Elvis, Mr. Rogers, the mysterious Dr. Mark, and a bunch of ill-mannered “dolls,” Lenora and her Honey board a train for a wild adventure that leads to some unexpected destinations.
Watch here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
