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
Some may have read the excellent ediorial written by Moderator Ben Nathanson in a recent High Risk/Recurrent/Advanced Prostate Cancer Reminder. Ben explains ‘time toxicity’ … a concept that effects many living with serious disease. If you missed his musings, here they are again:
Treatment that gives us time to live demands time in return. It drags with it scans, blood work, drives to the hospital, doctors running late, computers down, battles with insurance. Part of our gained lifetime is lost in dead time. Toxicity is always in the cancer mix. Financial toxicity has become part of the conversation alongside physiological toxicity, and time toxicity — time lost in an effort to gain time — is joining it. In a thoughtful 2018 essay, physician Karen Daily notes “Much of our patients’ time investments remain invisible to clinicians.” This year, in ASCO’s lead journal, three physicians have taken up the challenge, proposing that clinical trials, when reporting overall survival, distinguish between “Days with Physical Health Care System Contact” and days the patients actually own — “Home Days.” This a new idea only in cancer, say the authors — cardiology and other fields already make these kinds of measurements. When medicine’s best offer is a handful of months, we face difficult choices. Time toxicity casts a shadow over both survival time and quality of life. As we try to balance days added against side effects, it would be good to know how much of the time we’re gaining will be ours to spend.
Reading Ben’s thoughts prompted one of our regular participants to write a reply to us both that touched me to the core. I asked if we could reprint that too, and was graciously given permission on condition of anonymity. Here it is!
Ben, thanks for the article on “time toxicity” in the (recent) meeting announcement. It identifies an important consideration for all to think about in the fight vs. cancer and from my personal experience an impact that changes over time. Your write-up got me to thinking and pushed me to a holistic realization that this is basically an investment decision with expected returns.
For the prostate component of my cancer fight (now 17 years and counting), I did not think about the time investment in the first 14 years that I (and family members) were making to “do battle” (eg lab work, appointments with doctors, scans, treatments, family meetings, insurance challenges and personal downtime / reduced effectiveness in work due to treatment, etc.), It was a “no-brainer” decision and I never considered the tradeoff as the benefits for the opportunity to “continue to live life” due to treatments as my “life” returns were overwhelmingly positive vs.the “investment” required to do battle.
Having retired three years ago and simultaneously entering a new phase of my cancer fight I am aware of the increased time I (and family members) now spend on cancer treatment yet obtaining reduced time for life (and quality of life). I’m now spending significantly more time at Doctors appointments, treatments and longer periods of time post treatment feeling the physical effects of treatment and have begun to recognize I’m going to hit a point where this equation gets out of balance….and I’m not equipped with a decision model to manage that occurrence. Given my personal nature is to grind on stuff (I can make it work, give me time and let me try!) — I’m likely to blow right past the point of equilibrium where time toxicity and balance of life toxicity begin to get out of hand. For much of the first 14 years of my cancer fight I practiced a very large (and for me, healthy) dose of self-denial that I was dealing with prostate cancer. I was able to keep the cancer part of my life cordoned off, did not have significant residual time spent thinking / worrying / etc. about the disease and lived life to the max both personally and professionally. Now, in the last three years I am finding growing quantities of “thinking time” consumed by the disease and also sucking family members…. wife and children….deeper into the cancer battle as discussions / time encroach on them as well increasing the cost of investment (time) in the battle vs. cancer.
Prostate cancer is my second cancer fight, Ten years prior to the prostate cancer diagnosis I was diagnosed with a rare leukemia (rare as it was diagnosed in a limited number of folks (~2,000 / per year in the United States) and was usually fatal shortly after diagnosis as there were no lasting treatments until about 4 years prior to my diagnosis. As a freak outcome of scientific research a drug treatment was developed; the drug was intended for another cancer that had a much larger annual incidence of new cases; the drug was not effective on the targeted cancer but it was very effective on the rare leukemia. And at the time the treatment protocol was 7 days of continuous drip via a small pump one wore around the waist as an outpatient; minimal side effects; and if the first treatment didn’t work a second round was almost guaranteed to work. Talk about lucky! There was no way research funds would have been spent on this cure except by accident — which was exactly the case. The time toxicity for me in my first cancer battle was non-existent and I believe has indirectly helped me in the prostate cancer fight by giving me a dose of optimism and coping skills.
I think the topics raised by both of you….including Rick’s statement on treatment longevity results are important for the group to consider. These are relevant points of management in the cancer battle that I haven’t seen addressed by my oncologists (except one) nor psychologists and psychiatrists that I’ve also used in my treatment.
Editor’s Comment: In the original Reminder, I responded to Ben’s comments by adding one of my own. I pointed out that frequently Overall Survival benefits were shorter than might be expected because trials are often run on patients at a very late stage of their disease. This caveat should be considerd when we see the FDA reporting short life extension, sometimes as few as 2 or 3 months, for newly approved drugs.(rd)
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.
Some may have read the excellent ediorial written by 
