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.
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.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 4, 2022
Next meeting will be on Apr 12, 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/
Editor’s Pick: Heads up for a marathon session this week. And we keep returning to 2 topics …. intermittent hormone therapy (IHT), and of course Pluvicto (rd)
Topics Discussed
original low Gleason progresses to advanced PCa over 21 yr period; do you buffer on resuming IHT; Epstein reclassifies 3+3 to 5+4 with treatment implications; weighing time to Pluvicto availability with a trial now; stay with chemo or shift to Pluvicto?; Herb’s last man under the wire; starting darolutamide (Nubeqa); how long before testosterone returns?; after 5 yrs it’s time for IHT; side effects from chemo; post-Pluvicto – abi, Provenge, or …? ; alternative advanced disease markers; scan concordance is important for Pluvicto; vertebral fracture with advanced PCa may have implications.
Chat Log
Peter Kafka – Maui (to Everyone): 5:23 PM: Has the doctor suggested a PSMA scan while the PSA was up?
Len Sierra (Private): 5:39 PM: Rick, I’ve actually been on complete drug holiday since Jan. 12 of this year, so almost 3 months now. No Lupron, no daro.
Stephen Saft (to Everyone): 5:42 PM: my doctor told me it wouldn’t get approved but I fought for a long time and finally got him to put it through. It was approved and I had the Pylarify PET scan on March 4.
John Birch (to Everyone): 5:58 PM: Stephen, why the the doubt on insurance approval? Thats the isssue I am running into.
Frank Fabish – Ohio (to Everyone): 6:00 PM: Amir Mortazavi at OSU James Cancer Hospital
Stephen Saft (to Everyone): 6:00 PM: That is a very good question. I don’t know. I think the old school thinks that it won’t change treatment so the oncologist doesn’t like the idea.
Len Sierra (to Everyone): 6:23 PM: Steve, the half life of Ac-225 is 10 days and it takes 5 half lives to clear 95% of a drug, so you’re looking at 50 days of washout.
George Rodriguez-Chantilly VA (to Everyone): 6:29 PM: Rick, I need to drop off. Very informative. I’ll reach out later to get some information on what to expect with hormone treatment of Yonsa w/methylprednisolne in concert with Eligard.
Frank Fabish – Ohio (to Everyone): 6:29 PM: Rick I have to go. I have my 3 month check up and blood draw tomorrow. I’ll let you know results.
Ben Nathanson (to Organizer(s) Only): 6:30 PM: Len, aren’t these different half-lives? Isn’t drug clearance a function of pharmacokinetic half-life, not radioactive half-life?
AnCan Herb (to Organizer(s) Only): 6:31 PM: The biological half life is much faster. The unbound compound is excreted, and then the bound drug disappears with its half life. It is a two compartment model
Ben Nathanson (to Organizer(s) Only): 6:31 PM: Right, so less than 50 days
Len Sierra (to Everyone): 6:32 PM: Ben, I believe the greater concern would be the radioactive half life since that is the toxic payload.
Ben Nathanson (to Organizer(s) Only): 6:32 PM: But if it’s out of the body faster than that, it doesn’t matter if it’s still radioactive
Tony D’Errico – Cornwall, Ontario (to Everyone): 6:35 PM: I will see you all soon. bye for now.
Len Sierra (to Everyone): 6:35 PM: I guess we’ll have to consult with a nuclear medicine doc on this..
Ben Nathanson (to Organizer(s) Only): 6:45 PM: Herb, this video? “Lymphocytes as a “Living Drug for the Treatment of Cancer” and Emergence of the NIH cGMP Program to Support Patient Care Innovation” from 3/30?
AnCan Herb (to Organizer(s) Only): 6:46 PM: Yes, that should be it
Ben Nathanson (to Organizer(s) Only): 6:46 PM: Thanks!
John Birch (to Everyone): 7:08 PM: Thanks to all. Need to run apparently tornados are landing in the area.
David Muslin (to Everyone): 7:12 PM: Going to bed. See ya next week.
Stan Friedman (to Everyone): 7:23 PM: Good night. See you next week.
Mark Baldridge – Seattle (to Everyone): 7:57 PM: Thank you everyone for such good information – Kathy and Mark
Len Sierra (to Organizer(s) Only): 7:57 PM: Got to go, Gents. See ya next week.
George Rovder Arlington VA (to Everyone): 7:59 PM: Thank you all. Goodnight. George
Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 21, 2022
Apologies to all this week as the Reminder did not go to the full distribution list. My error whilst on the road! Nonetheless, you can catch up now … (rd)
Next meeting will be on Apr 4, 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/
Editor’s Pick: Peter K says “We have to strategize our own treatment!” And how can we fail to mention Jerry Dean’s incredible courage and attitude?!? (rd)
Topics Discussed
Prostate Cancer brain mets and Tx; new de novo Mx man discusses his Tx path; pembro will bve next Tx for MSI-H gent; what’s next – darolutamide, Provenge??; we have to strategize our own treatment; metformin; Orgovyx; super-broccoli; AUA Summit; Lu177 PSMA in Phoenix
Chat Log
Peter Kafka – Maui (to Everyone): 5:38 PM: Was the brain cancer Prostate cancer? I might have missed that.
William Franklin (to Everyone): 5:41 PM: He saiid it was unrelated.
Peter Kafka – Maui (to Everyone): 5:53 PM: IMUDX swab test provides info about whether Keytruda will be tolerated.
Pat Martin (to Everyone): 5:57 PM: Thanks to all.
Peter Kafka – Maui (to Everyone): 6:09 PM: What about Provenge at this point?
Julian Morales-Houston (to Everyone): 6:44 PM: I eat roasted brocolli along with brussel sprouts on a regular basis.
George Rovder Arlington VA (to Everyone): 6:45 PM: Thanks Rick.
Frank Fabish – Ohio (to Everyone): 6:47 PM: Got to go guys.
Len Sierra (to Everyone): 6:48 PM: That PCF site said eating broccoli had the anti-inflammatory effect of one Advil. So, take an Advil and call me in the morning.
Jeff Marchi (to Everyone): 6:48 PM: can’t take advil, on blood thinners
