Live performances: Many of us have missed them for two long COVID years. New Orleans has especially missed them. And while AnCan may have never missed them, given our virtual model, Herb Geller still rocked a standing-room-only, live crowd at the American Urological Association (AUA) Annual Conference last Friday the 13th (a good omen, in this case).
A number of you with prostate cancer will remember helping us by taking one or two online surveys last year, which made this research possible. Parts of this research had already been accepted at two other conferences, the European Society for Medical Oncology (ESMO) and American Society of Clinical Oncology (ASCO). While we were pleased to be recognized by those forums, COVID turned those conferences virtual, and there’s nothing like a live performance. Herb presented our greatest hits combining both the overall survey and our Active Surveilance specific questionnaire.
Survey participants said this about AnCan groups:
83% agreed the information is useful
67% discussed the information with their care teams
61% changed or informed their treatment path or strategy
71% found help navigating treatment path or strategy
80% became better advocates for themselves
Strikingly, AnCan participants have improved their lifestyle habits:
58% improved exercise habits
38% improved diets
50% reported reduced stress
AnCan helped participants make connections with each other:
85% found the groups to be welcoming
43% connected with others
30% developed friendships with other participants
Among those who attend early diagnosis, low-risk Active Surveillance meetings:
68% said that attendance helped them be their own best advocate
23% said that attendance informed them of new insights and treatments
AnCan concluded that:
The AnCan Support Group model increases patient knowledge, positively impacts treatment planning, and promotes lifestyle improvements while providing support to reduce stress, boosts confidence in navigating the disease, and improves quality of life.
AnCan empowers patients to self-advocate and improve their disease experience. This is integral to optimize physician/patient interactions and improve outcomes.
We advocate that virtual peer group attendance, based on our model, be included in (National Comprehensive Cancer Network) NCCN treatment recommendations for prostate cancer patients, especially with advanced disease.
If you took part in one of the two surveys, thanks again. And thanks especially to Rick Davis, Herbert M. Geller, James Schraidt, Howard Wolinsky, (and yours truly) for designing the surveys, crunching the data, and developing and presenting the insights from the data.
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 10, 2022
If you’re a Vet and want to be notified when our new Vets Group starts, please let Joe Gallo know at joeg@ancan.org. Right now we plan to go ‘public’ on June 23 and each 4th Thursday thereafter. May will be a practice session.
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/
Editor’s Pick: It ain’t easy to find ‘good help’ in Canada – especially with a rare type of prostate cancer (rd)
Topics Discussed
rare sarcomatoid PCa tumor; finding a GU med onc in Canada; mCRPC trial participation; Mx disease stabilizes; longer term Tx risk from same protocol; HCP collaboration; PSA drop 12 weeks after 1st Pluvicto; supplementing testosterone for bone strength; newbie to trimix; Peter Kafka nails it AGAIN with his words of wisdom
Chat Log
Peter Kafka – Maui (to Organizer(s) Only): 6:24 PM: PSA at DX around 4.XX
Herb Geller (to Everyone): 6:25 PM: https://www.foundationmedicine.ca/
Julian Morales-Houston (to Everyone): 6:50 PM: need to leave – will try to come back later.
John Antonucci – CT (to Everyone): 6:52 PM: Like Herb, I’m looking at the llit. on sarcomatoid. I’m hoping to find an author fom Canada; if I do I’ll write in. It also seems to me so far the treatment is the same for both variants.
Jeff (to Everyone): 7:03 PM: ENTRUMADENANT,ZIMBERELIMAB,DOCETAXEL EVERY 21DAY FOR A TOTAL OF TEN TREATMENTS i ALSO OPTED FOR AN ORCHECTOMY ………….,I WAS TIRED OF THE FEMALE MENOPAUSE FROM ADT THERAPY
Herb Geller (to Everyone): 7:08 PM: https://clinicaltrials.gov/ct2/show/NCT04381832 Adenosine Receptor Antagonist Combination Therapy for Metastatic Castrate Resistant Prostate Cancer (ARC-6)
Jeff (Private): 7:10 PM: You found it Herb the study
Herb Geller (to Jeff): 7:11 PM: Yes, that’s the study.
C Huerta (to Everyone): 7:22 PM: What doctors do we know in Australia?
Ancan – rick (to Everyone): 7:24 PM: Michael Hoffman
Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 26, 2022
BREAKING NEWS …. AnCan launches 2 new groups in April – Lupus and Pancreatic Cancer. Find more information on our website https://ancan.org under Groups menu tab.
And coming in May …. a Vets Prostate Cancer Group and Chronic Pain Group.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about this and our other 11 monthly prostate cancer groups 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/
Editor’s Pick:Perhaps enzalutamide/Xtandi is causing balance issues … sound familiar? And at the end – finding Pluvicto NOW (rd)
Topics Discussed
Peter K manages his own meds; pain issues from AUD; calcium & Vit D; Pluvicto vs Ac225+Lu177; denovo Mx man needs better guidance; balance issues & enz v daro; great report on UCSF’s GU med onc Dr. Borno; Pluvicto fails to hold chemo-naive man; long-term participant thinks about adding treatment
Chat Log
Herb : 3:24 PM: Len sent an e-mail that his eyes are dilated and filled with a dye so he can’t read the screen.
George Rovder Arlington VA (to Everyone): 4:03 PM: https://faculty.mdanderson.org/profiles/patrick_pilie.html
Peter Kafka – Maui (to Everyone): 4:04 PM: Dr. Pilie – Duke Medical school, He is a genitourinary med onc at MD Anderson
George Rovder Arlington VA (to Everyone): 4:05 PM: 2015-2018 Clinical Fellowship, Medical Oncology, The University of Texas MD Anderson Cancer Center, Houston, TX Assistant Professor, Department of Genitourinary Medical Oncology, Division of Cancer Medicine, The Univ. of Texas MD Anderson Cancer Center, Houston, TX
Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 18, 2022
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups 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/
Two new AnCan groups starting this month – 1) Pancreatic Cancer 2) Lupus. Check webiste
Editor’s Pick:Hear about VERY rare form of PCa …. and we revisit metabolic syndrome more than once (rd)
Topics Discussed
Denova Mx Dx …. in Maui!!; germline vs somatic mutations; med onc leaves disease largely untreated; very rare PCa type Dx; did abi cause metabolic issues?; puzzling scalp pain after spot RT to skull base; gabapentin side effects; younger man with denovo Mx has successful Tx; switching to Nubeqa+Orgovyx vs metabolic issues; 2014 participant returns doing well; Dennis Correia back with us; KP caves over Lu177; Pluvicto experiences
Chat Log
AnCan – rick (to Organizer(s) Only): 5:04 PM: Dr. George !!! A leftover from Dominic days
Len Sierra (to Organizer(s) Only): 5:08 PM: Yes, it’s been years since Dr. George S. joined us.
Henry (Private): 5:17 PM: Hey Rick — for the new fellow — recommend triplet therapy per Arasens or Peace? (After PSMA scan of course).
Maria (to Everyone): 5:18 PM: Hi everyone, I just wanted to check in and say Hi, Jeff is enjoying his hormone & zytiga vacation, April PSA is undetectable. You are all in my thoughts…
Joe Gallo (to Everyone): 5:19 PM: Welcome. Thanks for the update Maria.
Joe Gallo (to Everyone): 5:25 PM: Rana Clinic 858-657-7876
Alan Babcock (to Everyone): 5:53 PM: I might be in the wrong group. I am 9 weeks out from a prostatectomy. Dr. Correa, from Fox Chase is minitoring my PSA.
George Rovder Arlington VA (to Everyone): 5:55 PM: Alan, This group is for Stage 4 metastatic and Stage 3 Very High Risk.
AnCan – rick (to Everyone): 5:55 PM: Alan – you are best in Peter’s Low/intermediate group that meets every 2nd & 4th Monday same time and place. We know Dr. C very well
Edward Clautice (to Everyone): 5:56 PM: I received lutetium treatment in Germany last week. Cost about $25k. The appointment was made and paid for before the FDA approved pluvitco. The care was very good. They ran daily scans to monitor lutetium attachment to tumor sites. I am looking now to continue pluvitco here in the USA, potentially at the U of Florida. Question:703-463-0490. clautice@verizon.net. Take care, Ed
George Rovder Arlington VA (to Everyone): 5:57 PM: Thanks Ed. Best of luck.
AnCan – rick (to Organizer(s) Only): 6:23 PM: Dennis Correia is in the house … please give him a shout out! Welcome back.
Don Kramer (to Everyone): 6:40 PM: I just got appeal approval for PSMA formerly denied by UHC med. advantage. Don’t give up if you are originally denied on a potential option for diagnosis you know is approved by medicare but advantage is denying. will share more next week. great meeting thank you all.
Frank Fabish – Ohio (to Everyone): 6:53 PM: Got to go guys. See you next week.
George A Southiere Jr (to Everyone): 6:59 PM: great to see all the new guys and the old guys.enjoyed the meeting tremendously
Jerry Pelfrey – Mexico (to Everyone): 7:09 PM: Jerry, sorry I have to leave.
Henry (to Everyone): 7:12 PM: Thanks all; I have to drop off now. Have a great rest of your evening, gents!
MIke Yancey (to Everyone): 7:17 PM: Enjoyed being on this call for the first time. Plan to join again next week. Gotta run for tonite.
John Birch (to Everyone): 7:19 PM: Need to go, thank you everyone for sharing and info
In April, we had Dr. Christopher Wallis(Assistant Professor of Urology, Department of Surgery, University of Toronto and Urologic Oncologist) give a talk to our AS group titled “Prostate Cancer and Treatment Regret”, a common phenomenon patients experience after making their choices for treating their prostate cancers.
Dr. Wallis found in his research that about 13% of patients with localized disease overall have second thoughts about their choices. This includes patients on active surveillance. The surgical group had the most reset followed by radiation and AS.
“Every choice has risks and benefits. The goal isn’t just to cure the disease but to live a better quality of life” Wallis said.
He said that in counseling patients, one of his challenges is that there is not “a perfect correlation between symptoms and disease.” In other words, some patients are OK with losing their sexual potency—a major concern—while others are devastated. Some have similar reactions to incontinence. “Patient-centered care improves outcomes,” he observed. Walis said long-term, “financial toxicity” from treatment also is a largely unexplored topic.
Watch this presentation 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.
