AnCan’s founder, Rick Davis, innovated virtual peer-led support groups back in 2010. He recognized the potential of peer advice as the best information a patient could find. AnCan’s 2021 research confirms what Rick knew intuitively.
Neuroscientist Herb Geller PhD, the abstract’s lead author, highlighted the following key research findings,
“Our research indicates that peer-led groups don’t just improve quality of life around the things we can control like diet, exercise and stress. Eighty percent of our participants feel the groups make them better advocates for themselves, and well over 60% take information gleaned back to their healthcare teams.”
While this poster is featured in the Advanced Prostate Cancer track on Feb 17, AnCan is proud of its work to establish the stature of the low risk Active Surveillance (AS) protocol and includes its AS findings.
Co-author and nationally recognized AS Advocate, Howard Wolinsky, said:
“Sixty eight percent of our AS participants told us the Groups made them better advocates and 27% reported lower levels of anxiety – that’s a major difference. Active surveillance is the Rodney Dangerfield of prostate cancer – including our study at GU ASCO recognizes AS patients”
Rick Davis, founder of AnCan and a prostate cancer survivor, says the research demonstrates the power of patient communities on outcomes:
“I realized the power of peer-led support groups from my own treatment. Bringing them to a virtual platform 10 years before anyone had ever heard of COVID-19 and Zoom meetings, made peer support available to those compromised by geographical, physical and social issues. Recognition by GU ASCO is a big step in legitimizing AnCan’s work for all peer-led support.”
AnCan will remember our beloved Moderator, Tech Guru, FB Manager and buddy, Jake Hannam on Feb 20 @ 6pm EST. All are welcome – drop-in. NB It will be on Zoom not our virtual rooms – Zoom link: https://zoom.us/j/6516459299
Next week’s meeting will be on Tue, Feb 15. That’s because Feb and March mess up our Meeting Calendar, so we have to make adjustments to avoid consecutive nights! 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/
Editor’s Pick: Conflict of Interest …. we are all too familiar with community docs with another agenda. But what about Center of Excellence practitioners who push to fill their trials? (rd)
Topics Discussed
Disease recurs some 10 yrs after PBRT Tx; IHT and heart issues; drug insurance appeals by your doc; general med onc reacts too slowly; clinical trial conflict of interest; ABC man caves to chemo; PSMA scans and concordance w. FDG; 3000 PSA at Dx and still undetectible; statins make a difference; once finally found, RT nukes the spot.
Chat Log
Larry Fish (to Everyone): 6:31 PM: who tells him this – what a dummy doctor
Alan Moskowitz (to Everyone): 6:38 PM: Is Embr covered by Medicare? Or is it still in clinical trial?
James Barnes (to Everyone): 6:41 PM: I received a Embr for Xmas and I am now a fan!
Len Sierra (to Everyone): 6:46 PM: Alan, as far as I can tell, it is not covered by Medicare, but one of the many guys in our group who has one should answer this question for you!
Jeff Marchi (to Everyone): 6:53 PM: I have 2 Embr devices and have gone from 8+ hot flashes a day to 0 or 1 a day
Len Sierra (to Everyone): 6:54 PM: Jeff, does Medicare cover it?
Jeff Marchi (to Everyone): 6:54 PM: not as far as I know
Alan Moskowitz (to Everyone): 6:56 PM: Jeff, thank you.
George Rovder, Arlington VA (to Everyone): 7:09 PM: Dr. Paul Leger, GU Medical Oncologist at Georgetown Lombardi Center of Excellence is solid.
Mike (to Everyone): 7:14 PM: Thank you
Ted Healy- Portland, OR. (to Everyone): 7:14 PM: Could Peter’s insurance cancel his policy if they did not approve the meds?
AnCan Herb (to Everyone): 7:24 PM: People are suggesting Germany for lutetium and I am certainly aware of it. Howard Scher says he has set people there. And the cost is not prohibitive.
Len Sierra (to Organizer(s) Only): 7:27 PM: Herb, before you do that, get a PSMA scan and an FDG scan here in the U.S. to see if you are a good candidate for Lu-177. Technetium 99M
AnCan – rick (to Organizer(s) Only): 7:29 PM: We’ve been trying to get him to Elizabeth Guancial for 12 months.
Len Sierra (to Organizer(s) Only): 7:31 PM: Rick, unfortunately, she has moved away from GU for men over to GU oncology for women. She wanted to set me up with a new PA so I went to Dr. Oh via Telehealth. I hate to lose her. I thought she was super.
AnCan – rick (to russell hoover hudson florida): 7:37 PM: Russ – Guancial no longer seeing GU men; only GU women. Len just told me. Focus on Moffitt
Jim Greenfield (to Everyone): 7:46 PM: Thanks George! Wasn’t she great?
Frank Fabish (to Everyone): 7:46 PM: Got to go. Goodnight.
John Birch (to Everyone): 7:55 PM: Thanks everyone, need to go. Keep fighting!
Want to make 2022 the best year of your sex life? We’ve got the webinar for you in “Cancer, Chronic Illness, and Intimacy”.
From pleasure with a partner, or just riding solo, nothing is off limits in this webinar featuring sexual medicine rockstar , Dr. Rachel Rubin.
Featuring a panel of patients Dion (lupus), Jimmy (prostate cancer), Kim (multiple sclerosis), and Michael (testicular cancer), and questions from the audience, you’re sure to find answers to your own questions.
The AnCan team thanks Dr. John Antonucci for submitting his opinions on hospice and palliative care in end-of-life considerations. Dr. John is a retired clinical, academic and research psychiatrist. His most recent gig before hanging up the white coat was at the VA providing care in the addiction clinics. He is also a peer in our High Risk/Recurrent/Advanced Prostate Cancer Group.
Our discussion group (High Risk/Advance Prostate Cancer) hasn’t talked much about end-of-life care or making decisions about things like resuscitation status, stopping treatment or hospice care. But the topic has come up lately, and since we have Dr. BJ Miller, co-author of a relevant book and a palliative care physician, on the AnCan Advisory Board, it is appropriate to take a first or second look at his chapter.
The authors start by defining these often-confused terms: Hospice provides end-of-life care with the goal of comfort rather than trying to cure a disease. It is actually a sub-section of palliative care. Palliative care is treatments added-on to regular medical care, at any stage of serious illness, and is intended to improve the quality of our physical, spiritual and emotional lives.
The authors explain what qualifies a patient for Hospice care. Anyone who has a terminal illness and is ready to stop treatment aimed at curing it, and who is expected to live 6 months or less, may qualify. A multidisciplinary team is then assigned and the treatments are brought to us, in our own homes if desired. (There are also residential hospices but these are not as common as often assumed.) Health insurance policies, including Medicare, cover Hospice. There are useful tips in the book on finding and choosing Hospice providers, and a section for when the hospice is not performing well. The authors encourage us to not to wait until our last few weeks to get this process going.
Palliative care is now its own medical specialty. Again, the idea is to make our lives nicer by helping to reduce a wide variety of suffering, including pain, anxiety, drug side effects, depression, fear, nausea, and spiritual pain. Most of this type of care is delivered in the hospital or outpatient clinic. Palliative care is integrated into our existing treatment plan, rather than being comprehensive like Hospice. Health insurance will generally cover these services although it might leave us with co-pays and deductibles. And again, the authors urge us to start early; there is no requirement that we be close to the end, only that we have a serious illness.
The overall effect on me of reading this chapter was not only education but also reassurance. Not only reassurance that we deserve comfort and don’t have to hide our suffering, but also that Someone will be there to care about our suffering and try to help. Quite comforting, I believe.
I rarely write in the first person. I make an exception today to eulogize Jake Hannam z”l (the Jewish equivalent of RIP).
Many of you will recognize Jake from the picture above, lying on his bed participating in our virtual meetings. This was largely Jake’s world – literally! I want to fill you in between the lines as to why AnCan and The Reluctant Brotherhood were Jake’s window to the world for the past 8 or 9 years. Jake was intensely agoraphobic – a fear of open spaces. He made no secret of this if you knew him, and occasionally mentioned it publicly in our virtual support groups. Jake was private but not in the least ashamed of his phobia.
For me personally Jake pesonified why I started this virtual endeavor 10 years pre-Covid. I recognized many people could not attend a real location – not only for physical or geographical reasons, but because they had a social disability … like, for example, agoraphobia.
In Jake’s case this was not recent. His wife, Paula, told me it was present when they dated and discussed having kids. She made it clear she wanted these future Hannams to visit the ocean and Disneyland; Jake made it clear those trips would need to be with just their mom. Jake was catholic – he held great relligious faith. So much so, that Jake told me on several occasions that his fear of death was subsumed by his fear of venturing outside his safe zone – and that safe zone shrunk the older he got. He preferred to stay at home on Xmas and Thanksgiving waiting for Paula to bring home leftovers, rather than take the 20 minute ride to his older son, JP’s house. His fear severely compromised Jake’s ability to seek the best treatment for his advanced disease. Because we loved Jake so, it frustrated many of us that a 40 minute drive to Johns Hopkins was never an option; he had to settle for mediocre local care.
I supported Jake from around 2013 (I think) when his cryotherapy failed. He was part of the Inspire UsTOO prostate cancer written forum, then started attending our Reluctant Brotherhood virtual telephone conference calls. Jake and I had our differences over the years. Unlike some of his AnCan brothers, I was smart enough to avoid politics, so Jake and I largely disagreed over treatment choices,and occasonally how I ran AnCan. That said, he never failed to support our effort, even updating a video introduction to AnCan as recently as early December that you can watch here.
Jake was our tech and social media guru. He figured out how to get AnCan on YouTube, Facebook and Twitter, He managed those sites for us, often posting content he sourced. Jake figured out how to record and publish our meetings; and, he was the first to volunteer to learn GoToWebinar to run our webinars. And many of our volunteers came to know Jake through being trained by him on these platforms. If you watched the screen when Mr. H was participating, his icon would go dark every so often for a minute or so. Most of us insiders knew that was Jake having a puff on one of his beloved cigarettes that he never gave up to his dying day. We all loved Jake dearly, even if it was not always kumbaya; he could be grumpy even irascible at times. Jake always discounted his own extensive knowledge about prostate cancer, and chose to be our behind the scenes moderator, making sure the meeting flowed well technically and muting any noisy interlopers..
Jake leaves his wife Paula, and JP and Phil, his two married, super smart boys with PhDs, one of whom travels the world for the World Bank. His first grandchild is expected next month. Jake was immensely proud of both of them, For details of Jake’s family, education and career, you can read his obituary here ; we thank Geoge Rovder for forwarding this to us.
AnCan and The Reluctant Brotherhood plan a joint virtual tribute to Jake Hannam on Sunday, Feb 20 at 6.00 pm Eastern. It will be on the RelBros Zoom platform not ours; we’ll publish a flyer in upcoming Reminders. Our sincere thanks to Peter Kafka and John Tesiberg for arranging this. This is my eulogy, so I doubt I wil take more time on Feb 20th.
And one last, very recent reminiscence to close that expresses a lot. I share this in Phil’s words from an email sent last Saturday, Jan 29, two days before Jake left us:
This is Phil (Jake’s younger son). Dad has been sleeping most of the day owing to the pain medication and hasn’t been able to use the computer since around Jan.14. He is declining more with each day. I offered to read his email today, and in reply to yours, he smiled and said “Onward and Upward” (the most he has said all day!).
Sincere thanks to you and my Dad’s other brothers at AnCan. We will keep you posted.
May Jake’s memory always be a blessing to us at AnCan Foundation and all who knew him.
I rarely write in the first person. I make an exception today to eulogize Jake Hannam z”l (the Jewish equivalent of RIP).