By Howard Wolinsky
Need some support? We’ve got it now.
Just a few years ago, though, support for men on active surveillance was hard to come by. In fact, there was none.
We were pushed into groups with men with more advanced disease and the side effects of treatment, including impotence, shortened penises, libido loss, urinary and fecal incontinence, etc. Some guys on AS were frightened, incorrectly assuming the problems were inevitable.
Back in 2017, I wrote in my column in MedPageToday.com about the need for separate support groups for men on AS.
Things changed rapidly as Thrainn Torvarldssen, a pioneer from Iceland, and I schemed to create Active Surveillance Patients International along with Mark Lichty and Gene Slattery.
Now, active surveillors can get plenty of support.
—Cancer ABCs Active Surveillance Virtual Support Group ZOOM is on at 4 p.m. EST Wednesday, February 9. Go to https://us02web.zoom.us/j/86292743989?pwd=MlVGSzhlZDlqMjlPeWZyRkNlRUhGdz09 Jan Manarite, ABC’ EVP, gives lots of TLC. Bring your biopsy report, MRIs etc. Jan loves to interpret the tests.
—AnCan’s Virtual Active Surveillance Support Group meets at 8 p.m. EST this Wednesday and the first four Wednesdays of each month. I am co-founder of this group. We get a large turnout. But newbies always go first. Hilarity often ensues. Join, me and the boys. Joe. Hugh. Garry. Jim. One of our guys says it’s his fav streaming program. And another always brings a plate of sprouts and chows down. Bring your greenies and to: Barniskis Room: https://www.gotomeet.me/AnswerCancer Also: https://ancan.org/groups/joining-instructions/
—Join the Active Surveillance Nationwide Support Group on the second Thursday of each month at 4:30 p.m. Pacific and 7:30 p.m. Eastern. This is a very intimate, relaxed group. Our Canadian brothers and sister will make you at home. I like this meeting a lot. National differences are invisible here.
—The Prostate Forum of Orange County currently sponsors two zoom meeting a month where they share information about treatment decisions. These meetings are conducted by a medical doctor and survivors. Meetings are held the second Tuesday of each month at 5 p.m. Pacific are dedicated to newly diagnosed. The meetings held the fourth Thursday of each month at 5.pm. cover advanced sharing.
The newly diagnosed are welcome at both meetings, however, the emphasis is toward ongoing concerns in the advanced sharing.
The Forum follows the national guidelines recommending AS as the preferred treatment for those who qualify.
Each month also on the fourth Thursday, but at 7 p.m. Pacific, we sponsor a presentation by a prominent medical professional. Their site at www.prostateforum.org includes an extensive library of presentations. Helpline 1-714-459-2058
The Active Surveillor looks forward to attending this very well-organized meeting. I like the emphasis on the newly diagnosed. These patients need help, and the Forum delivers.
—Prostate Cancer UK meets the 2nd Tuesday of every month from 7- 8p.m. GMT. That’s 1 p.m. Central for those unacquainted with NHS and BBC.
It will be Tuesday the 8th of February from 7-8 p.m. GMT. Come and join the chat and share your concerns and experience with each other.
You can join them on video chat or voice call from your computer, tablet or smartphone. Click here to join.
Or you can dial in on the phone:
United Kingdom: +44 131 460 1196
Meeting ID: 882 090 3966
Passcode: 527989
Good luck to the new moderators, Hugh and Frank. Keep your peckers (chins) up, lads.
February 26 at 12-1:30 p.m. Eastern. Cultcha and the prostate.
Now for something completely different--a historical and sociological view of the prostate. The program is entitled: The Secret Life of the Prostate: The Good, The Bad and the Ugly
Ericka Johnson, PhD, professor of gender and society, Linköping University, Sweden, will talk about her new book, "A Cultural Biography of the Prostate" (MIT Press, 2021.) She examines the gland from a societal and historical point of view; the mistreatment and manhandling of men and their prostates throughout history, how the same surgical group that created the mastectomy went on to roll out the prostatectomy, how famed medical artists did not take note of the prostate until the 15th century, and more. She promises to share her views on AS--not covered in the book.
Register here: https://zoom.us/meeting/register/tJYsdeugqDosHdPjr1Qtg1ZtqswYOE_aDq4p
March 4-8. Climbing the ZERO Summit.
Mark your calendar.
The Tres Amigos, Joe Gallo, Jim Schraidt, and I, all moderators for the AnCan/ZERO/US TOO Virtual Support Group for AS, will be holding a special support group on AS at the ZERO Summit. We meet at 11 a.m. Eastern March 7.
You can register directly here:
ZERO Prostate Cancer Summit | ZERO - The End of Prostate Cancer (zerocancer.org)
For more detailed information and to register click the below link:
Meanwhile, This just in…
What The Active Surveillor readers are saying:
Nancy Gallagher, of Albuquerque, New Mexico, has followed AS news to help her physician husband:
“Howard Wolinsky consistently brings his readers the latest medical news regarding active surveillance and low-risk prostate cancer diagnosis and treatment. It's almost impossible to keep up with all the current studies without help from writers like him. Many thanks!”
Thank you, Nancy.
Paul Schellhammer, MD, noted urologist, prostate cancer survivor, and past president of the American Urological Association:
"In his new newsletter, Howard Wolinsky, a well-informed and respected journalist, shares observations about active surveillance for prostate cancer, a strategy he has pursued/ The newsletter provides updates and insights for prostate cancer patients, especially those newly diagnosed.”
Free subscriptions: TheActiveSurveillor.com