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 2, 2022
Apologies for the bad link to our Elizabeth Jameson Solo Arts Heal interview. The Marsh pulled the recording to edit it – find it now at https://www.youtube.com/watch?v=D4n2a… Don’t tell Jimmy G or Elliott, but this could be the best yet! She’s an inspiration …
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 are probably going out to the public on June 23; 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 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: How do we relate to our prostate cancer? And we back-end a VERY young denovo Mx newbie (rd)
Topics Discussed
Denovo oligoMx gent; group’s take on Covid immunizations; darolutamide fatigue … maybe?; exercise fights HT side effects; PSA creeping on IHT; how do you relate to your PCa??; AnCan’s Speaking Freely; brief snippets – true or false?; chemo plateaus PSA around 17; for Locometz seek Lutathera sites; are v. small changes in insignificant PSA a concern; Pluvicto shortages; 43 yrs old w. denovo Mx.
Jeff Marchi, San Francisco (to Everyone): 3:39 PM: when you sign up with Promise your sample is processed by Color and their genetic counselors talk with you about results. if you have future issues they will work with you.
Thomas Jacobsen (to Everyone): 3:42 PM: Dropping off now. Thanks everyone for your comments. – Tom
MIke Yancey (to Everyone): 3:59 PM: Gotta drop early. Be on next weeks meeting.
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
Going back many years, there has been debate around what is and what is not considered to be cancer. As an old-timer in the field of cancer advocacy I recall this debate ignited by UCSF breast cancer surgeon extaordinaire Dr. Lara Esserman when she spoke about IDLE in a Lancet article. IDLE stands for Indolent Lesion of Epithelial Origin. Early blogger Mike Scott latched onto this since the concept was supported by her UCSF prostate cancer colleagues, Drs. Peter Carroll and Matthew Cooperberg. Mike’s “new” Prostate Cancer Infolink article,New Terminology, IDLE threats, and human behavior (about cancer)from May 5, 2014 is defintiely worth a read!
Fast forward 8 years, and we are back in the midst of the same debate as to whether some suspect lesions should or should not be considered cancer. And who is that at the heart of this …. none othre than our own Advisory Board member, Howard Wolinsky stirring up the pot yet again along with urologist buddy, Dr. Scott Eggener from University of Chicago. Howard and Dr. Scott got to talking and rekindled this debate as to whether calling a suspicious lesion cancer too early can result in more harm than good. Howard, for example, had a life insurance policy application rejected in 2010 becasue of his prostate cancer diagnosis that has only produced one diagnosed Gleason 3+3 lesion in multiple screenings and biopsies over almost 13 years!. Dr. Eggener was motivated to write an journal article; he leads leads an illustrious group of authors that includes Matt Cooperberg … and of course Howard representing the patient voice in a controversial piece that appears in ASCO’s Journal of Clinical Oncology this month titled Low Grade Prostate Cancer: Time to Stop Calling It CancerLow Grade PCa – not cancer HW JCO 0422 .
While Dr. Cooperberg maintains his opinion, Peter Carroll may no longer wholly endorse that view. He and another of our Advisory Board members, Dr. Jonathan Epstein, are preparing rebuttals. Another well respected medical professional went as far as to say privately,”Unfortunately I really struggle with this. Why do we need to infantilize patients. We don’t call metastatic cancer the ‘monster'” There are definitley two sides to the coin ….. from the anxiety the ‘C-word’ provokes and repurcussions that Howard found out can be financial; to failing to properly acknowledge the gravity and treatment of precancerous lesions medically and otherwise.
Read the Chicago Sun Times report here; and Howard Wolinsky’s own take posted on his blog here. To see Howard and Scott Eggener speak about this yourself, listen to them on Chicago NBC news …. then you decide!!
AnCan is proud to announce that we recently joined the Modern Medicaid Alliance, a partnership
between Americans who value Medicaid and leading advocacy organizations. We look forward to
working with the Alliance to educate policymakers and the public about the benefits and value of
Medicaid.
As part of our partnership with the Modern Medicaid Alliance, we will be highlighting the diverse
populations that depend on Medicaid for their health and financial security. Medicaid covers about
1 in 5 Americans, including millions of children, older adults, people with disabilities, and 2million
veterans. Medicaid provides an essential safety net for when Americans need it, providing high-
quality, cost-effective care to more than 73 million people nationwide.
We join the Modern Medicaid Alliance at a critical time. While policymakers debate changes to
Medicaid, the program is enjoying widespread support from Americans. In fact, recent polling
found that 86% of Americans want a strong, sustainable Medicaid program – and fewer than 20%
of Americans support cutting Medicaid funding.
AnCan is particularly interested in furthering Medicaid expansion in all States in order to
promote health equity. Indeed, providing mental health services to veterans and to all those
enduring chronic conditions is an urgent need.
