Hi-Risk/Recurrent/Advanced PrCa Video Chat, July 29, 2025
MARKET RESEARCH STUDIES: AnCan has a new market research opportunity for you and your Care Partners through our collaboration with Pinpoint Patient Recruiting. It’s seeking to fill 2 different studies with:
Men &/or Carers – both can apply but with separate applications
Must be US based
Men confirmed hormone sensitive with or without mets OR castrate resistant
Active treatment is NOT required – you can be on a drug holiday
You’ll intially earn $125 for a 60-minute virtual online interview. Researchers want to understand your experiences living with prostate cancer and your opinions on treatment and care.
There’s another $50 if you provide evidence from your medical records of your confirmed diagnosis – screenshots suffice.
If you opt in for a second interview, another $125 is available. Your Carers also have the opportunity to earn $125 for a 60 minute interview. By our reckoning, that’s upto $425!
The researchers are particulalry interested in reaching diverse minorities – especially African Americans and Hispanics.
If you’ve already been contacted directly by Pinpoint from a prior study and been accepted, please let us know at rd@ancan.org.
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, Myriad Genetics, Telix, Blue Earth Diagnostics and Foundation Medicine
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
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Join our other free and drop in groups:
Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/
Veterans Healthcare Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Editor’s Pick: Is radiation worse than surgery in intraductal? (bn)
Topics Discussed
Intraductal, but leaning toward radiation because of comorbidities and surgical risks; hot-flash news flash: a salute to Dr. Wassersug and his ADT book; cancer doc waiting for a 1.0 PSA is less scary than it seems; anyone have heart problems on abiraterone? (answer: lots of us); Marc V. awaits liver biopsy results and mulls future steps; bloodwork problems go away when he switches to one abi with a meal from two abis without; hopes for spotting recurrence early with a blood test for residual disease — but it’s still early in the pipeline; actinium trial turns him down but is vague about why; lymph nodes light up PSMA PET, but MRI says nothing’s there; liver and spleen mets appear to be a false alarm; our disagreements with Mayo’s Dr. Kwon; happy about monthly results that show his PSA still dropping; anyone know how to get back on your feet after chemo’s Mack truck takes you down?
Chat Log
Hank Zajic Springfield VA · 6:32 PM
Deville was my Radiation Oncologist. He works out of SiIbley. First rate!
Hank Zajic Springfield VA · 7:06 PM
Richard Wassersug’s book is Androgen Deprivation Therapy 3rd Edition, published in 2023. You can also find him/ his work at the website LifeonADT. I found the book (and his course) an excellent “manual” that describes the therapy approaches, side effects and practical things to help get ahead of impacts. For a novice, looking down the barrel for the first time (so to speak) I found it a terrific resource.
AnCan – rick · 7:09 PM
Dr. Javid Moslehi https://www.ucsfhealth.org/providers/javid-moslehi
Jim Marshall, Veteran, Alexandria, VA · 8:11 PM
When esophogeal cells are damaged, they are replaced by Stomach cells. Known as Barrett’s Esophagusgiving at 15% chance of developing cancer in the throat. Jim
AnCan – rick · 8:39 PM
Embr watch https://embrlabs.com/
Hi-Risk/Recurrent/Advanced PrCa Video Chat, July 15, 2025
Earn up to $425… but move quick!
AnCan has a new markert research opportunity for you and your Care Partners through our collaboration with Pinpoint Patient Recruiting. It’s seeking to fill 2 different studies with:
• Men &/or Carers – both can apply but with separate applications
• Must be US based
• Men confirmed hormone sensitive with or without mets OR castrate resistant
• Active treatment is NOT required – you can be on a drug holiday
You’ll intially earn $125 for a 60-minute virtual online interview. Researchers want to understand your experiences living with prostate cancer and your opinions on treatment and care. There’s another $50 if you provide evidence from your medical records of your confirmed diagnosis – screenshots suffice. If you opt in for a second interview, another $125 is available. Your Carers also have the opportunity to earn $125 for a 60 minute interview. By our reckoning, that’s upto $425!
There are 30 slots available so move quickly. To see if you qualify for the study or to get more information, please visit pinpointpatientrecruiting.com/pc-interview-ancan2025 or contact Brittany Weathersbee at brittany@pinpointpatientrecruiting.com. All information and responses will remain confidential. If you’ve already been contacted directly by Pinpoint from a pror study and been accepted, please let us know at rd@ancan.org.
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, Myriad Genetics, Telix, Blue Earth Diagnostics and Foundation Medicine
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
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Join our other free and drop in groups:
Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/
Veterans Healthcare Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Editor’s Pick: PSMA PET finally lights up at PSA of 20 — there may be a lot it’s not showing (bn)
Topics Discussed
Exactly one lymph node removed — who does that?; worred about surgeon who shrugs off pathology findings; since prostatectomy in 2001, he’s been on and off the ADT train — time for monotherapy?; keeping extremities iced during chemo — is it effective?; PSMA PET doesn’t light up till PSA reaches 20 — could his cancer be a variant type?; what’s this rise in alkaline phosphatase — and what does the test show; with an initial PSA of 325, he did the work and is now down to 0.09
Chat Log
AnCan Barniskis – rick · 6:04 PM
Go To support 877 582 7011
AnCan Barniskis – rick · 7:04 PM
Dr. Jonathan Epstein https://advanceduropathology.com/ pathology 2nd opinion
AnCan Barniskis – rick · 7:05 PM
Dr. Ming Zhao https://profiles.mountsinai.org/ming-zhou pathology 2nd opinion
Jim Marshall, Alexandria, VA · 7:06 PM
Fairfax Hospital, VA is part of the INOVA Healthcare system.
AnCan Barniskis – rick · 7:27 PM
Was MN Onc who raised Barry to triplet, not Kwon.
Barry Blomquist · 7:29 PM
Yes I pretty sure it was Dr Antonarakis and MO after he sent them email.
AnCan Barniskis – rick · 7:45 PM
https://www.lifeonADT.com
Jim Marshall, Alexandria, VA · 7:48 PM
Leaving for the Vetrerans SUpport Group. Jim M.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, June 24, 2025
Remember — no meeting next week! Next meeting is July 7.
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, Myriad Genetics, Telix, Blue Earth Diagnostics and Foundation Medicine
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
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Join our other free and drop in groups:
Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/
Veterans Healthcare Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room
Editor’s Picks: Gleason 10 learns his doc stopped testing his PSA; active surveillance patient starts treatment too late. (bn)
Topics Discussed
Reports of Dr. Snuffy Myers’s death are greatly exaggerated, as Paul Schellhammer can confirm; doc silently dropped PSA from Alaska newcomer’s yearly blood test in 2011 — now he’s Gleason 10; active surveillance patient’s PSA passes 4 without treatment and it’s 435 now; “Orgovyx? No, you don’t want that,” he’s told; PSA falls from double-digits to undetectible in two months with help from brachy, IMRT, and hormone therapy; a lot of anemia symptoms, but his blood work doesn’t show it — might it be something else?; to see Dr. Antonarakis, he needs to be sicker; hints of a trial that targets foamy gland prostate cancer; NCCN guidelines say added abi is an option for very high risk patients getting ADT with primary radiation; newcomer is 4+3 but he’s got ductal — should he be with us or Low/Intermediate?; no meeting next week — see you July 7.
Chat Log
John A · 6:48 PM
Stage IIIc
Karl Sullivan · 6:58 PM
unable to get audio
AnCan Barniskis Room · 7:00 PM
Karl – call 877 582 7011 for suppport. Have you selcte teh right speaker in the Settings?
AnCan Barniskis Room · 7:16 PM
Dr. John Antonucci dr.john@ancan.org
Karl Sullivan · 7:18 PM
Thank you. I have audio but NOW, not my camera. This IS my first sign in. Very impressed with the conversation.
Ben Nathanson · 7:23 PM
Going off camera a sec, still listening
dan, alexandria · 7:39 PM
👍
AnCan Barniskis Room · 7:41 PM
Ember device https://embrlabs.com/
dan, alexandria · 7:42 PM
Another good meeting, guys. Thanks…. I have to leave.
Gary V Portland, Oregon · 7:53 PM
Good evening gents thanks for all the information…
Steve Roux, North Michigan · 7:57 PM
Have a great week and weekend guys! GREAT meeting once again!
Richard Tolbert · 8:00 PM
Ben, thanks for moderating. Great meeting!
Thomas M · 8:26 PM
Got to bounce, gentlemen. Thanks for a great meeting.
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.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, June 10, 2025
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, Myriad Genetics, Telix, Blue Earth Diagnostics and Foundation Medicine
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
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Join our other free and drop in groups:
Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/
Veterans Healthcare Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room
Editor’s Pick: Does a “tricky” cancer merit two chemotherapies at once? (bn)
Topics Discussed
Urged by Alexa’s mom to check their PSA, 3 discover de novo metastasis; we’re not spokespersons or shills for any pharma company; doc piles it on with two chemo drugs and they’re hitting him hard — does he really need both; his tricky intraductal diagnosis demands top-notch docs; Eggner, Liao, and Szmulewitz are “the A team”; PSA risen to 0.4 doesn’t mean “see you in 3 months”; after a “mismash” of treatment, Tanya Dorff may give clarity; plan to use focal therapy raises eyebrows; sharing details of a cardio-oncologist visit; are more Pluvicto rounds really needed for a super-responder?; pace yourself when working to regain muscle; scary dental side effects from a bone strengthener; Hope Lodge visit was “an amazing experience”; former Moffitt patient’s advice: go elsewhere; his tricky radiation looks like it hit the mark; trouble with gynecomastia; feeling better after 5 rounds of chemo; treating the prostate after de novo metastasis — radiation or surgery?
Chat Log
AnCan Barniskis – rick · 6:30 PM
dr.john@ancan.org
Len Sierra · 6:41 PM
This comes from GU ASCO 2024: Site of Metastatic Disease Median OS HR 95% CI P value Bone 59.4 m Ref Lung 82.2 m HR 0.6108, 95% CI: 0.47- 0.7988, p,0.001 LN 66.6 m HR 0.845, 95% CI: 0.7435-0.9875, p= 0.018 Liver 45.3 m HR 1.58, 95%
AnCan Barniskis – rick · 6:50 PM
davidm@ancan.org
AnCan Barniskis – rick · 6:51 PM
David Muslin
DJFairbanks · 6:58 PM
Our PSAM PET showed lung nodules at 0.36
Gary V Portland, Oregon · 7:18 PM
You are all wonderful really appreciate all of your knowledge just incredible…See you all in 2 weeks..
DJFairbanks · 7:19 PM
THank you everyone – I look forward to learning more from you all.
AnCan Barniskis – rick · 7:24 PM
Elisabeth Heath https://www.mayoclinic.org/biographies/heath-elisabeth-i-m-d/bio-20576547
Len Sierra · 7:25 PM
Sartor left Mayo this year.
AnCan Barniskis – rick · 7:27 PM
Forget Sartor
Len Sierra · 7:30 PM
AstaBio, a biopharmaceutical company developing next‑generation targeted cancer radiotherapies, today announced the appointment of Oliver Sartor, MD to its Medical Advisory Board.
Alfredo in Houston · 7:31 PM
SpaceOAR, Barrigel, BioProtect are the three products that create space between rectum and prostate
Steve Roux, North Michigan · 7:42 PM
This group is awesome – I’ll see you next week gang!
Alfredo in Houston · 7:43 PM
I have to run. Bye for now. Thanks for all the good information tonight. Good health to all!
DJFairbanks · 7:44 PM
Ooh, I want a tshirt – 🙂
AnCan Barniskis – rick · 7:45 PM
Here’s where you get a T-shirt … or sweatshirt. https://ancan.org/shop/
dan, alexandria · 7:45 PM
Another great session… but I do have to scoot. Thanks All….
DJFairbanks · 7:46 PM
@Bob Schwartz, USN, Venice FL Bob – What chemo did you have?
AnCan Barniskis – rick · 7:48 PM
G-d bless you, Lee
George (Chicago) · 7:58 PM
Thank you, gentlemen. Much learned, much to be learned.
Steven T · 8:03 PM
Thanks everyone. Have a great evening!
George (Chicago) · 8:03 PM
Thanks very much, Ben. A pleasure meeting you in person for sure. Yes, we’ll stay in touch. Do you think this is the right group for me?
Alan Babcock · 8:05 PM
On exercising find something you love and do it
AnCan Barniskis – rick · 8:08 PM
https://flcancer.com/en/physician/elizabeth-guancial-md/ Elizabeth Guancial
