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.
Peter Kafka’s words this week allow us to plug our wonderful Stage 3 & 4 Cancer Caregivers Group …. although Peter’s words should encourage us to consider changing its title! I have seen them in compassionate action this week reaching out to a caregiver whose daughter was recently diagnosed with a difficult T3 lung cancer, and they are magnificent.
Led by former USAF Lt. Col and Women’s Health Nurse Practitoner, Susan Lahaie, our other Moderators include Pat Washburn and Barbara Dyskant, all of whom have lost partners to cancer – Susan and Barbara to prostate cancer, and Pat to breast cancer. The Group meets 1st & 3rd Tuesdays at 8.00 pm Eastern in our Barniskis Room. While all caregivers are invited to both groups, we do not discuss grief and bereavement during our 1st Tuesday meetings. Check out the Group and sign up at https://ancan.org/cancer-caregivers/
Back to Peter Kafka’s thoughts that speak volumes adn endorse the message above:
A WOMAN’S PERSPECTIVE
I recently stumbled upon a book published back in 1897, THE WOMAN IN BATTLE, by Madame Loreta Janeta Velazquez. I have not finished it at this writing, but it has already stimulated a number of thoughts relative to our individual journeys with prostate cancer.
Madame Velazquez was a young and quite ambitious woman who disguised herself as a man and fought in the United States Civil War as an officer in the army of the Confederacy. What intrigues me about her story is that it is a candid first-hand account of battles, conflict, life in the masculine military and observations of male attitudes and behavior from a female perspective. I don’t want to go into detail about her accounts other than to say that she charged right into the fray, doing battle from the start on the front line at the Battle of Bull Run.
I bring this story up as I said because I find it relevant to my own “battle”, and perhaps yours as well, with prostate cancer. Many of us on this journey have female partners who are in their own way affected by the nature of our own infliction with prostate cancer needing some form of treatment and intervention. But we rarely, if at all in our meetings hear of this experience from the female perspective. I know that we (AnCan) and other support organizations facilitate gatherings for caregivers that give partners some outlet of expression. But for myself and many of you most of our female partners would not categorize themselves at “care givers”. They are our partners who have been thrown into the fray by no choice of their own and have tried to navigate their way through the obstacles that our disease has presented.
Recently at one of our meetings a participant asked if I knew of a woman that could speak to his wife about what to expect and experience relative to a course of ADT drugs which he was about to embark upon. This request stopped me in my tracks because I had never had such a request before. It took me a while but I was able to find a woman who was of a similar age and experience who was willing to dialogue with this man’s wife. It is never hard to find another man with experience to speak with regarding any number of prostate cancer treatment protocols. I have often relied on other “brothers” as many of you no doubt have as well. But for those of us who have female partners, they are sometimes left adrift to fend for themselves, only hearing our own complaints and miseries and sometimes the opinions of our treating physicians.
But it is important to remind ourselves that if we are blessed with a woman in our life, that they too are going through changes and challenges as a result of our prostate cancer diagnosis. Their experience and perspective are just as valid and important as our own. This is not just a MALE disease because it can affect many of the ways that we relate to female partners, physically, emotionally and mentally. It is not often that female partners join in on our calls, but they are never excluded from most of our discussions and their perspective is very much valued.
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
On March 23rd, we had the pleasure of hosting Solo Arts Heal with special guest, Twinkle Burke!
Twinkle is an Actor/Writer from New York City. She is equally comfortable on stage and screen and writing in different genres and styles. Her work has been performed with TMI Project, The Actors Studio Playwright and Directors Workshop, Lift Every Voice: Black Women Speak Festival, and The Drawing Board to name a few. She can be seen in various independent films and on TV in various shows, including Season 3 of HBO’s SUCCESSION. She plays “Eugenia” in Colin West’s latest film, LINOLEUM premiering at the SXSW Festival in March of 2022. She is an avid proponent for using the arts to learn, heal, and grow.
In this SAH, Twinkle performed a piece telling how she used her craft of acting to sustain herself while miscarrying her child.
Watch the performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
In March, we had Dr. Pamela Munster(UCSF Helen Diller Family Comprehensive Cancer Center, and AnCan Advisory Board Member) give a talk to our AS group titled “Novel Strategies to Treat Prostate Cancer”
There were discussions about an exciting new treatment for Prostate Cancer in the works, plus hear from the AS community about anxiety, finding the right medical team, and how relationships impact stress levels in this special presentation.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 1, 2022
AnCan was honored by the GU ASCO 2022 Conference in mid-Feb, where we pesented our abstract and poster. You can see just how effective our support groups (and recordings!) truly are: https://ancan.org/ancan-recognized-by…
If you missed Dr. Rachel Rubin’s excellent webinar on Intimacy and Sexual Dysfunction, watch the recording at https://ancan.org/webinar-cancer-chro… Next week’s meeting will be on Mon, March 7. 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/ To sign up to receive a weekly Reminder/Newsletter for this Group or others, go to https://ancan.org/contact-us/
Editor’s Pick: Wot a session – we covered everything! You choose this week … and leave a comment (rd)
Topics Discussed
How reliable is C-11 acetate scan?; Pylarify locations; where do you find PSMA protein?; brain fog from enzalutamide; ARASENS trial; Lyrica for sciatica?;shower safety; postural hypotension; Ssign up for ZERO Summit; PROPEL trial – abi + olaparib/PARP-I; PARP vs anti-PD1; cardio-oncology issues and presentation; abscopal effect may improve PARP-I; finally something works WELL – cabazitaxel + carbo; anemia and Procrit; resuming abi may have worked; prednisone vs dex with abi
AnCan – rick (to Everyone): 4:50 PM: Postural Hypotension
Dennis Correia Arizona (to Everyone): 4:53 PM: Leaving the meeting early for another meeting this evening. Great discussion among the regulars tonight.
Len Sierra (to Everyone): 4:54 PM: Frank, I think you’ll find this little book very helpful for low back in general. It’s called, Treat Your Own Back. It’s very inexpensive.
Tumor responses improved following a steroid switch from prednisone to dexamethasone in castration-resistant prostate cancer patients progressing on abiraterone:
Conclusions: Durable PSA responses occur in up to 40% of patients following a ‘steroid switch’ for PSA progression on abiraterone and prednisone. Studies are ongoing to elucidate the mechanisms underlying this response.
Jerry Pelfrey – Mexico (to Everyone): 5:50 PM: got to go my son called
George Rovder Arlington VA (to Everyone): 5:55 PM: Thank you Peter and all