AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
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AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Newbie not sure whether to attend AS, Low/Int. or both; Post radiation/ADT treatment schedule; Comparison of radiation treatment options; SBRT and fertility; When should you get a PSMA PET scan test?; Understanding biopsy results; Preparing for IRE ( electrical focal zapping) and SBRT clinical trial – is this the best option; Pros and cons of participating in a clinical trial; PCRI Conference — largest patient centric conference in the world.
Chat Log
AnCan – rick · 8:24 PM
Gents – please feel free to share your emails with each other to follow up
AnCan – rick · 9:11 PM
IRE ???
AnCan – rick · 9:16 PM
Electroporation – electrical focal zapping
Helpful Tips to be Your Own Best Medical Researcher
AnCan asked Mike Wyn, a valued AnCan Frequent Flyer and intrepid researcher, to provide a little navigation to those who are new to research… as well as useful tips for some old hands like myself. I’ve already gathered some research nuggets from Mike’s wisdom… thank you, Mr. W.
Here are a few tips ensure the medical information you are researching is reliable and accurate
Book Research
Check the publication date: authors may need at least a year to write a book, and the average time between a book’s acceptance and its publication is typically between 9 to 12 months. Hence, the data may already be outdated when it hits the shelves
Professional Presentations
Check the credentials, disclaimers, and disclosures of the presenters. Who is the author? What is the sponsoring organization providing the information? Preferred sources are from reputable institutions, such as universities, hospitals, or government health agencies.
Google Web Searches
Use command “site:” to limit you search to top-level domains like .gov, ,org and ,edu. For example, type: latest NCCN guidelines for prostate active surveillance site: .gov OR site: .org OR site: .edu
Be cautious with .com sites unless they are from recognized and credible entities. Medical databases such as PubMed, Cochrane Library, and Google Scholar are good sources for cross-referencing scientific research.
Articles, Online Posts
Check articles, online posts, videos etc. for their sources, including scientific studies, medical journals, or clinical trials. Information from peer-reviewed journals is typically more reliable than content from non-peer-reviewed sources. Poor reviewed means that other people similarly qualified to the author have reviewed teh article adn provided comments.
Anecdotal Evidence
Anecdotal evidence is information that has been observed by the person reporting but not verified. Be skeptical of anecdotal evidence such as personal stories. It is not scientifically reliable. Focus on information supported by scientific evidence and clinical studies. The quality levels of evidence from highest to lowest for medical data are:
Systematic reviews: collect and evaluate all available data/evidence within the researchers’ criteria. An example is the “Cochrane Database of Systematic Reviews”. Meta studies are a systematic review.
Randomized controlled trials: participants are randomly assigned to experimental and control arms. The double-blind trial is the gold-standard of medical research where neither the participants nor the researchers know the placebo or medication/treatment is given. This is to prevent bias and to ensure the validity and reliability of the study.
Cohort observational study: participants with common traits or exposure to the proposed medications or treatments are followed over a long period of time.
Case study or report: a detailed report of result after treatment of an individual. This is formalized and reviewed anecdotal evidence.
Medical Trial Reports
The phases of medical trial studies cited by published medical papers are:
Pre-clinical studies: laboratory experiments using cell cultures, animal or computer models. In vitro means tested In Vitro – literally ‘in glass’ means testing outside a living organism, in a test tube or petri dish, In Vivo – literally in life -means testing in a living organism, often mice. Then studies move on to humans…
Phase I trials: assess safety, dosage and side effects of the proposed medications or treatment.
Phase II trials: expand P 1 to evaluate efficacy of the proposed medications or treatment – how well it works..
Phase III trials: confirm efficacy, safety, dosage and to evaluate side effects of the proposed medications or treatment in much larger samples. This is often where randomized blind and double blind design is used. Blind means the patient does not know what they are getting; double blind means neither the patient nor the clinician know what is being dosed.
Phase IV trials: monitor long term effectiveness and safety of the medication or treatment.
Statistical Terms
Some terms regarding statistical data cited in medical journals are explained as follows:
N = the number of participants: be wary of studies with a very low N.
HR = hazard ratio: HR=1 – there is no change in the proposed medication/treatment compared to control baseline. HR<1 – there is a reduction of risks with the proposed medication/treatment. HR>1 – there is an increase risk with the proposed medication/treatment.
CI = Confidence Interval: A trial shows that a particular drug has a 20% effect within a certain time frame with 95% CI. This shows that the study, if repeated many times, it will be 95% confident that the 20% reduction will be consistently observed.
P-value = Probability Value: This measures how strong the evidence is that the hypothesis, or effect being tested, is correct, rather than the result being random, or incorrect (null hypothesis). We seek a P-value that is <=0.05 meaning that there is a 95% or better likelihood the result is attributable to what is being tested..
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.
We were so happy to welcome AnCan’s own, Dan Dressen!
Dan is a moderator for our Active Surveillance Prostate Cancer support group, and also a talented musician from Southern Idaho, with a passion for Americana music. With roots in Minnesota and a stint in both Southern and Northern California, Dan has honed his skills on the guitar since the age 14.
In 1975, while at the University of Minnesota, he filled in as student coordinator at the Whole Coffeehouse. The Whole, as it was know, brought in music that attracted audiences locally, regionally and nationally and he still follows the music and musicians from that time period.
Now today and for over a decade, he has been entertaining at open mic nights, sharing his unique blend of country-inspired tunes with audiences in various venues on West Coast. Married to his wife Lila for 35 years, Dan is joined by their two feline friends Willow and Webster. Drawing inspiration from songwriters such as Guy Clark, Tom Russell, John Prine, and Robin & Linda Williams, Dan brings his own distinct voice to the Americana genre.
You’ll hear warm songs, fantastic stories, and great conversation. Dan has learned the importance of being “active” when taking charge of one’s health journey, and will also share the importance of being your own best advocate. (an AnCan favorite!)
Transperineal Biopsies – AnCan’s favorite Standard Bearer explains!
If you’ve been around AnCan’s prostate cancer programming, and for sure our Active Surveillance and Low/Intermediate Groups, you are certain to know AnCan moderator and medical journalist Howard Wolinsky. He has campaigned on many issues impacting men like him with very low, low and intermediate risk prostate cancer. The list is long – and included below!
Howard has three signature campaigns. He has worked ceaselessly to expand the number of men diagnosed with very low, low and low/intermediate risk prostate cancer who are treated with the active surveillance protocol. He is a founding member of the medical group advocating to rename very low grade prostate cancer something other than cancer. It recently dawned on us that AnCan, one of Howard’s ever present platforms, had never blogged on TPs.
TPs avoid the germy rectum and virtually never cause infections or potentially deadly and disabling sepsis, although nothing is 100%. The biopsy needle is placed through the perineum, the space between the rectum and the testicles. This is not only patently more hygienic avoiding all fecal material, but also allows access to posterior areas of the prostate that cannot be reached with the TR protocol. Here’s an excellent short video to better explain.
Over 800 people—fellow patients and some leading physicians—have signed his petition to phase out transrectal biopsies. Wolinsky called on Medicare and Congress to intervene after a scandal in Norway caused the European Association of Urology to take on the issue in 2021 when a Norwegian died from sepsis following a prostate biopsy. The policy head of EAU told Wolinsky that transrectal biopsies were tantamount to “malpractice” in Europe. Wolinsky moderated a debate on TP vs. TR at AnCan in 2022 AnCan also ran two webinars on the topic in 2022:
So what did the American Urological Association do?
You might expect some resistance to a major change in practice that’ would cost urologists time to be trained and up to $40,000 in equipment to set up this new approach. That’s what happened. Wolinsky, representing AnCan, as a consumer reviewer, told the AUA Early Detection Guidelines in 2023 that they should recommend transperineal biopsies as the preferred method. He said men were dying while they were debating which end of the egg is better to break first.
AUA still put TP on par with TR in its guidelines. A small step for men, as Neil Armstrong said on the first moon landing. The AUA is conservative and says it requires high levels of evidence from research before changing its guidelines—even though EAU counterparts consider TP their preferred method. Daniel Lin, MD, vice chair of the AUA committee, said in 2023 that randomized clinical trials would be the key to resolving the issue and several were coming in the next year.
Dr. Badar Mian’s single-center RCT at the University of Albany showed TR and TP essentially had the same results in terms of infections. It was widely criticized for not having enough patients to reveal rates for sepsis.
Dr. Jim Hu’s multi-center study based at Weill-Cornell “almost” showed a statistical benefit to TP in a paper presented last January. But no cigar. The study was expanded and it is clear that TP wins in this research. Hu told the recent AUA meeting about it, but won’t talk about the results until the study is published.
But TP, meanwhile, is in increasing demand. A poll of 145 AS-educated readers of TheActiveSurveillor.comfound that 36% had undergone a TP biopsy – far above the national average of 15% now and 10% two years ago. 54% of respondents expect to undergo transperineal procedures in their next biopsies.
None of this is say biopsies should be eliminated, just that they should be done as necessary and as infrequently as possible. A decade ago, urologists recommended annual biopsies. As their confidence in AS has increased, the frequency varies by practice: from every other year to three to five years as in Dr. Klotz’s practice in Toronto. Wolinsky’s own care as a peer in this Active Surveillance cohort has de-intensified with annual visits to his doctor, Dr. Brian T. Helfand | NorthShore He has not had an MRI or biopsy in eight years–though his doctor still considers Wolinsky on AS. At age 76, he is considering hopping off the AS train.
Just in case you think Howard is a one-track (or even three-track) pony, here are a few other issues he has undertaken on behalf of men living with very low, low and intermediate prostate cancer.
Where in the world is best for a radical prostatectomy?
Ever wondered whether medical tourism makes sense for a radial prostatectomy? After all, most of us are well aware that a RP comes with significant expectations for erectile dysfunction and incontinence. A recent paper in JCO Global Oncology analyses surgical outcomes in 10 countries covering almost 22,000 men, although by far the most (72%) come from Germany. Notably none are Scandinavian where we already know Active Surveillance (AS) for men with Low/Intermediate risk prostate cancer (PCa) is highest.
If you’ve been paying attention to our AS Mods, in particular Howard Wolinsky, you will already know that the US lags far behind when it comes to treating suitable men with AS. This study confirms 84% of men treated in the US were Stage 1 and 26% were Grade Group 1. Only the Barbers of Seville performed more aggressively treating 88% of T1 and 27% in GG1. The Brits were way out ahead treating just 13% of men with T1, 9% in GG1. G-d Bless the National Health Service and its cost saving measures.
Sexual dysfunction reported a fairly tight band between 40-53%. The happiest campers were those singing Waltzing Matilda in Oz, while the Brits were the loudest complainers, although Canada was slightly higher when weighted. US was in the middle.
Those Spanish toreadors caused the most urinary bother at 54% (33% when weighted) albeit 29% reported issues going in. The Italians only reported 1% after surgery and 10% before… either those Italian surgeons are true maestros, or the Signore are not being honest. USA was right around average at 9%.
The main caveats in the study are the huge variance in respondent numbers between countries with a heavy bias to Germany. The researchers also recognize that men in different countries may answer the survey referencing different standards. All told, this is the fist ever comparative study… and for me personally, I’d stick to the beaches and the Prado when visiting Spain!
There are a lot of numbers to plough through here, and a Mike Wyn deserves a big shout out for helping us get through them. If you want to dig into them yourselves, you’ll find the link at https://ascopubs.org/doi/pdfdirect/10.1200/GO.23.00420
above all, to make biopsies safer. He started this campaign with an article entitled
Ever wondered whether medical tourism makes sense for a radial prostatectomy? After all, most of us are well aware that a RP comes with significant expectations for erectile dysfunction and incontinence. A recent paper in JCO Global Oncology analyses surgical outcomes in 10 countries covering almost 22,000 men, although by far the most (72%) come from Germany. Notably none are Scandinavian where we already know Active Surveillance (AS) for men with Low/Intermediate risk prostate cancer (PCa) is highest.