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.
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
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.
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 February 23rd, we had the pleasure of hosting Solo Arts Heal with special guest, Barbara Dyskant!
Barbara is an energetic and versatile pianist, composer, singer-songwriter, and writer who strives to use her art to warmly evoke empathy with her audience and empower them to move forward in their lives, as well as to entertain and delight. She also was caregiver for both her daughter and her husband’s cancers.
Barbara’s other passions include hiking, dancing, camping, adventuring, laughter, meeting people, reading about science, preserving the environment, good conversations, and learning from everyone. And using what she learns from her experiences and those of others to improve lives.
Watch the performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
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.”