Active Surveillance Prostate Cancer Video Chat, June 25th, 2025
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, Myriad Genetics, Telix, and Blue Earth Diagnostics.
Active Surveillance (AS) for low-risk prostate cancer involves unique challenges compared to other treatments. This online support group is designed for men and their caregivers who are currently on or considering AS. We hold four meetings monthly, recording only the second and fourth sessions. Our discussions cover a wide range of topics, including anxiety management, biopsy experiences, and the decision-making process around continuing or discontinuing AS. Newcomers are given priority to share their experiences, so we encourage you to join us.
AnCan, is proud to announce that two of its dedicated patient advocates have been named to the esteemed Cancer Health 25 list. This annual recognition by Cancer Health magazine salutes outstanding individuals who are making a profound difference in the lives of those affected by cancer.
The Cancer Health 25 list highlights the unwavering efforts of patient advocates who bridge critical gaps in cancer care, providing essential support, education, and resources. As the article states, “No one should face cancer alone. Luckily, a vast range of skilled and dedicated patient advocates can provide support to people with cancer and their loved ones.” The list acknowledges individuals who raise funds and awareness, build programs, share information, facilitate access to care, and much more, especially for vulnerable and underserved communities.
We are incredibly honored to see two of our own advocates recognized among such an inspiring group of individuals. This recognition underscores the vital role that patient advocates play in ensuring that no one walks their cancer journey alone. Our advocates tirelessly embody Dr. Harold P. Freeman’s vision of filling the ‘disconnect between what we discover and what we deliver’ in cancer care. We are immensely proud of their dedication and the profound impact they have every day.
Ritchie Johnson
Among those recognized is Ritchie Johnson, MBA, RN, founder of the Chris “CJ” Johnson Foundation and co-founder of AnCan’s Renal Medullary Carcinoma (RMC) virtual support group. Ritchie launched the Chris “CJ” Johnson Foundation in memory of her son, who died of RMC, a rare and aggressive type of kidney cancer primarily affecting young African Americans with sickle cell trait. A relentless advocate, Johnson has tirelessly pushed for increased RMC awareness, funding, and scientific attention, which has led to the formation of multiple clinical trials.
Howard Wolinsky
Also honored is Howard Wolinsky, a Pulitzer Prize–nominated medical journalist and a prominent advocate for active surveillance in prostate cancer. Diagnosed with low-risk prostate cancer at 63, he chose active surveillance over immediate treatment 15 years ago and has not yet required intervention. He passionately supports others navigating similar decisions, co-authoring dozens of articles in medical journals with physician-scientists. He is the editor of TheActiveSurveillor.com and is a co-founder of our Active Surveillance Prostate Cancer Group.
Our mission is rooted in the belief that shared experiences and peer support are fundamental to navigating a cancer diagnosis. The organization’s advocates work diligently to connect patients and caregivers, provide trusted information, and foster a strong, supportive community. Their inclusion in the Cancer Health 25 is a testament to their commitment and the effectiveness of AnCan’s patient-centric approach.
AnCan extends its deepest gratitude to Cancer Health for shining a light on the invaluable contributions of patient advocates and for recognizing the tireless efforts of its team members.
Active Surveillance Prostate Cancer Video Chat – June 11th, 2025
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, Myriad Genetics, Telix, and Blue Earth Diagnostics.
Active Surveillance (AS) for low-risk prostate cancer involves unique challenges compared to other treatments. This online support group is designed for men and their caregivers who are currently on or considering AS. We hold four meetings monthly, recording only the second and fourth sessions. Our discussions cover a wide range of topics, including anxiety management, biopsy experiences, and the decision-making process around continuing or discontinuing AS. Newcomers are given priority to share their experiences, so we encourage you to join us.
2nd Opinions for Biopsies -Jonathan Epstein, MD Contact:jonathaniraepstein@gmail.com https://advanceduropathology.com -Ming Zhou, MD, PHD Now at Mount Sinai Health System in New York City. If you have questions for him, please contact him directly at Email: Ming.zhou@mountsinai.org) -John Hopkins Pathology https://pathology.jhu.edu/patient-care/second-opinions Biopsy Videos/Links topics: Master pathologist Zhou continues his primer on prostate biopsies https://howardwolinsky.substack.com/p/master-pathologist-zhou-continues Second Opinion Diagnosis in Prostate Pathology Grand Rounds in Urology https://www.youtube.com/watch?v=rTjOED_da1I Should You Get a Second Opinion on Gleason 6 Pathology Slides? Expert Laurence Klotz, MD https://www.youtube.com/watch?v=J9DE6xhKQ_4
Eric- Atlanta8:25 PM
2nd Opinions for MRIs -Second opinion of MRI from Johns Hopkins Images and Reports for Providers | Johns Hopkins Radiology (hopkinsmedicine.org) Email: eradiologycenter@jhmi.edu Phone: 443-287-7378 Fax: 443-769-1210 NIH 2nd Opinion MRI: Choyke, Peter (NIH/NCI) Radiologist pchoyke@mail.nih.gov -Accolade Radiology NY, PA https://accoladeradiology.com/mritap.html Radiology Check (Switzerland) https://radiologycheck.com/en
Eric- Atlanta8:29 PM
PROMISE/COLOR Genetic Study w/ANCAN affiliate link: https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
Bill (VA) 8:34 PM
Sounds relatively heavenly.
Derek (SoCal) 8:43 PM
👍
AnCan Barniskis Room – Rick 8:43 PM
Chief is Dr. Pow Sang. I don’t know whre he stands on AS https://www.moffitt.org/providers/julio-pow-sang/
“…messaging by prostate cancer support groups and foundations lacks all credibility because they receive significant sponsorship and support from Big Tech and those in the business of prostate cancer.”
When Bert Vorstman MD chose the byline Is the cure worse than the disease? in his recent The Active Surveillor article discussing his perceived truth about prostate cancer, it raised a huge red flag for us at AnCan. If you live with anything more than Gleason 3+3 disease, there is no cure. And doctors who speak about cure will invariably backtrack and agree that they should be speaking about a durable and contnuing remission, a phrase coined by the late Dr. Snuffy Myers.
Vorstman is correct in saying that PSA is not specific to the prostate gland – the salivary glands produce it too, but it’s no ‘barefaced lie’ and raises another red flag – that further tests are needed to find out why PSA is elevated.
I am loathe to use the title Dr. when this MD claims that most published medical evidence is false. I can’t pretend to imagine the standard of his medical education in New Zealnd. But I can agree with Vorstman and his Ablin sidekick, Ron Piana, that some 3+3 prostate cancer should not be named cancer and calls for surveillance rather than surgery or radiation.
That’s about all we do agree on. Both fail to appreciate AnCan’s position that the PSA test is about information, not treatment. So discouraging PSA testing throws the baby out with the bathwater. Where are we supposed to source this headsup information elsewhere? Despite repeated request in the comments, that I urge you to read, nothing is suggested.
I had a PCP who didn’t believe in PSA testing. My PSA leapt from 2 to 10 in 2 years and had it not been for my uroogist, who I was seeing for a kidney cyst, I would now be the wrong side of the grass with no AnCan. There are many, many men like me – ask the minions of de novo metastatic men showing up in our support group weekly. Is the cure worse than the disease? is ignorant. It patently fails to acknowledge that many men with prostate cancer require treatment to avoid a prolonged and painful death.
You decide if AnCan provides a distorted message and if the prostate cancer world is one big, distorted financial scheme. Is that ‘The Great Prostate Hoax’ (Ablin & Piana) or are they the hoaxsters?
What concerns us equally at AnCan is how The Active Surveillor can publish this nonsense, followed only days later by this headline “Don’t miss your PSA screening—your life may depend upon it”. Everyone is entitled to an opinion, in fact many of you have heard the expression, “Opinions are like a**holes, everyone has one!” And I’ll add, some people confuse what comes out of one with what comes out of the other.
That said, we don’t have to provide a soap box for opinions that confuse our core audience, and even discourage them from maintaining best medical practices to addres their condition. Howard Wolinsky publishes The Active Surveillor – AnCan loves Howard the way you love that gnarly old uncle who pinches your cheek while sticking a buck in your pocket. He’s truly a treasured member of AnCan’s Advisory Board, and occasional Active Surveillance Moderator.
Raising this post in various AnCan Groups has educated me to understand that Howard’s journalist instinct encourages him to publish all sides of an issue. AnCan’s postion is that anything discouraging men from PSA testing inhibits efforts to fight prostate cancer. We are not just critical of HW; we suggest it seriously questions his credibility when he then encourages men to get tested a coupleof days later. What to believe? Don’t be an enabler.
What do you think? In the Vorstman/Piana post, Howard encorages you to let him know – please do! howard.wolinsky@gmail.com
Active Surveillance Prostate Cancer Video Chat, May 28th, 2025
Special Participant – hear from a man with a very rare case… intraductal prostate cancer cells alone
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, Myriad Genetics, Telix, and Blue Earth Diagnostics.
Active Surveillance (AS) for low-risk prostate cancer involves unique challenges compared to other treatments. This online support group is designed for men and their caregivers who are currently on or considering AS. We hold four meetings monthly, recording only the second and fourth sessions. Our discussions cover a wide range of topics, including anxiety management, biopsy experiences, and the decision-making process around continuing or discontinuing AS. Newcomers are given priority to share their experiences, so we encourage you to join us.
Link to Eggener https://surgery.uchicago.edu/faculty/scott-e-eggener-md
Hugh -Houstonsent: 9:01 PM
Link to Helfman https://www.northshore.org/apps/findadoctor/physicians/brian-t.-helfand
AnCan Barniskis – ricksent: 9:01 PM
Helfand
Georgesent: 9:07 PM
gdiaz8@hotmail.com
AnCan Barniskis – ricksent: 9:19 PM
So George… technically intraductal has no Gleason score although it heightens risk significantly. Some pathology soceties have recommended it should be assigned a Gleason. I always thought it was automatically assigned a 4, I expect the other men who had had intraductal had sufficient other cores to give them a Gleason score. I would ask Dr. Epstein to assign you a Gleason.
Rick (Atlanta)sent: 9:21 PM
https://connect.mayoclinic.org/group/prostate-cancer/ Forum discussion
Georgesent: 9:21 PM
Thanks, Rick. I hope to get more clarity from Dr. Epstein.
Marty Keoughsent: 9:23 PM
Thanks Everyone! Marty K
Dan Gifford, Pensacola, FLsent: 9:30 PM
But you can view it NOW at The Active SUrveillor YouTube channel: https://youtu.be/aoyReZwU5v8?si=Baa5O4JJzQYeFdDy
AnCan Barniskis – ricksent: 9:31 PM
Guys – I have to run over to check another meeting. Will try to return before you close.
Maxsent: 9:55 PM
greatmaxx@gmail.com in case don’t have my email-Max
Maxsent: 9:56 PM
Boakye
George sent: 9:58 PM
Thank you, gentlemen. I truly appreciate your time and knowledge. New to this and it can be overwhelming at times.
