Groups vary according to who their sponsors and leaders are. Particeps
cave--participants beware. Some groups are fronts for particular hospitals or maybe radiation practices. Some groups are very broad and AS patients may feel intimidated by the talk of erectile disorder, incontinence, brain fog, hot flashes, penis shrinkage and the like. That's why some of us started ASPI and AnCan support for AS. I have done an annual program for Zero, which took over UsToo. I met some leaders from the Zero Sphere. Their personal experiences can shape their groups. No surprise. But I have found some of the biggest proponents for AS are guys who have been treated. But some leaders tend to steer men to what they know best--their own experience. I have been criticized for being too pro-AS. I took that seriously. I try to help men learn about AS but I also have helped some find appropriate surgeons and radiation oncologists. Just a patient trying to help other patients.
Oh were it possible to generate wide discussion on "Achilles heal" of PCa lead support groups in America, AS not first words out of leaderships' mouth.
To Tom: You are 100% correct! If it were not enough to surmount positions of AUA, NCCN, you name it, support groups-some in existence 3-4 decades-find little or no interest in encouraging discussion of Active Surveillance, the very reason average attendance remains unchanged; there are far more of us than them, ask Sweden. From my experience group leader brings back "fresh, new" information from USTOO Support Group gathering in mid-west long before reported in "The Active Surveillor", ASPI and ANCAN. Go figure; some non-profits are run counter to their own "Statement of Purpose."
No, I've been fortunate to see with my own eyes the caliber of person you truly are. The "elephant in the room" clearly, is, lack of promotion of AS discussion in at least one national support group aside from "train of interest."
Howard, Howard, Howard, you've meant so much to soooo many, any decision you make has the full support of every one of us 4 billion males on earth. But from strictly a selfish standpoint, by staying the course we-collectively-are that much wiser. Yes, personally I am in agreement with your central tenet, "Why!" But I'm reminded a of 70-year-old I recently introduced PSMA PET and ANCAN to. Decades from having organ removed without any follow-up, 2 small spots were found base of spine. Center of Excellence argued against scan. Your activism had a profound impact in his life. Why step away when on-going documented evidence of the righteousness of your argument can continually be shoved back in the face of "THE INDUSTRY" from medical opinion which places our health over profit.
A few years back, we started a couple of support and education groups ONLY for men on active surveillance. The support is there for the asking. Join us at 8-9:30 p.m. Eastern on the first four Wednesdays of the month. Check in with AnCan at Barniskis Room: https://www.gotomeet.me/AnswerCancer We each have our own journeys/decisions. But join us.
Rick, It's exactly because there has been no change in the cancer since 2010, I am mulling this over. A single core of microscopic Gleason 6 was found then--enough for "The Notorious Dr. R.P." to recommend surgery. That cancer was never seen again in 80+ cores in six biopsies. In those days, we had annual biopsies. But those may assure that my "cancer" has long been safe and that I now have reached an age where I don't need to monitor so closely. I can hop off the train or keep on with AS lite. I am asking the opinions of experts like us and also the urologists.
Rick, Thanks for your concern. I am coming from a good place. I am sorting out what my fellow patients and expert doctors have to say. I am not acting rashly. I am weighing the pros and cons. I think I'll be fine either way. Howard
I was diagnosed in May this year. The urologist sent my wife and I to an oncologist radiologist who explained radiation. Then, I went to my urologist and he asked if I wanted hormone shots. I said no to both and went for a second opinion. I’m now with Memorial Sloan Kettering in NYC on AS. Another place we had gone to for a second opinion wanted me to get an ultrasound biopsy. I declined that offer. Looking for support for AS is not easy. Many support groups have men who have had treatment. I can’t relate to them. In fact, I don’t think about it much. I could use support from AS patients. If you feel though that it’s time to move on, then go. Life is only so long. I’m 72. Living each day the best I can.
BTW I am age 66 and a Gleason 7 (3+4). Will continue to follow up with semi annual or sooner PSA’s and MRI. Prior to recent biopsy doc also did CT and bone scans to ensure no spread outside the prostate. That was reassuring. My vote for you is stay the course but obviously a personal decision. Take care.
Say it ain’t so. I read in disbelief that you were thinking about abandoning Active Surveillance. Particularly with no change in status of the cancer. Other than AS fatigue which can be challenging why abandon now at the age of 76? Sorry if I appear negative but based on the odds the majority of us will not live into our 90’s. That to me is a stretch goal. I too have been monitoring for 13 years semi annual PSA’s (recent 20) 3 biopsies with recent no change in grade. I think until a significant change in size or grade I’ll stay the course. Don’t want to risk treatment side effects. Wish you well with your decision. PS you have my email if you want to DM
I say, Stay the course Captain! Minor inconveniences that provide me with reassurance are A-OK in my book! I am 70 and was diagnosed in 2017 with 3+3. I've had 3 biopsies and 2 MRI's. The moved me to 3+4 two years ago after the first MRI guided Biopsy. No change in two years. DR. Zeitman at MGH keeps a close set of eyes & a finger on me!!! Onward Captain!
Groups vary according to who their sponsors and leaders are. Particeps
cave--participants beware. Some groups are fronts for particular hospitals or maybe radiation practices. Some groups are very broad and AS patients may feel intimidated by the talk of erectile disorder, incontinence, brain fog, hot flashes, penis shrinkage and the like. That's why some of us started ASPI and AnCan support for AS. I have done an annual program for Zero, which took over UsToo. I met some leaders from the Zero Sphere. Their personal experiences can shape their groups. No surprise. But I have found some of the biggest proponents for AS are guys who have been treated. But some leaders tend to steer men to what they know best--their own experience. I have been criticized for being too pro-AS. I took that seriously. I try to help men learn about AS but I also have helped some find appropriate surgeons and radiation oncologists. Just a patient trying to help other patients.
Oh were it possible to generate wide discussion on "Achilles heal" of PCa lead support groups in America, AS not first words out of leaderships' mouth.
So do we need to "re-train" them?
To Tom: You are 100% correct! If it were not enough to surmount positions of AUA, NCCN, you name it, support groups-some in existence 3-4 decades-find little or no interest in encouraging discussion of Active Surveillance, the very reason average attendance remains unchanged; there are far more of us than them, ask Sweden. From my experience group leader brings back "fresh, new" information from USTOO Support Group gathering in mid-west long before reported in "The Active Surveillor", ASPI and ANCAN. Go figure; some non-profits are run counter to their own "Statement of Purpose."
Thanks, Steve.
I am just weighing possibilities. My real goal here is to spark a debate, which I think I am succeeding at.
I haven't decided yet what I will do personally. But I see lots of other guys are facing this decision. They are as divided as the docs on what to do.
In any case, even if I quit the Brokeback Mountain of AS doesn't mean I am abandoning la causa.
Howard
No, I've been fortunate to see with my own eyes the caliber of person you truly are. The "elephant in the room" clearly, is, lack of promotion of AS discussion in at least one national support group aside from "train of interest."
Howard, Howard, Howard, you've meant so much to soooo many, any decision you make has the full support of every one of us 4 billion males on earth. But from strictly a selfish standpoint, by staying the course we-collectively-are that much wiser. Yes, personally I am in agreement with your central tenet, "Why!" But I'm reminded a of 70-year-old I recently introduced PSMA PET and ANCAN to. Decades from having organ removed without any follow-up, 2 small spots were found base of spine. Center of Excellence argued against scan. Your activism had a profound impact in his life. Why step away when on-going documented evidence of the righteousness of your argument can continually be shoved back in the face of "THE INDUSTRY" from medical opinion which places our health over profit.
Tom,
A few years back, we started a couple of support and education groups ONLY for men on active surveillance. The support is there for the asking. Join us at 8-9:30 p.m. Eastern on the first four Wednesdays of the month. Check in with AnCan at Barniskis Room: https://www.gotomeet.me/AnswerCancer We each have our own journeys/decisions. But join us.
Rick, It's exactly because there has been no change in the cancer since 2010, I am mulling this over. A single core of microscopic Gleason 6 was found then--enough for "The Notorious Dr. R.P." to recommend surgery. That cancer was never seen again in 80+ cores in six biopsies. In those days, we had annual biopsies. But those may assure that my "cancer" has long been safe and that I now have reached an age where I don't need to monitor so closely. I can hop off the train or keep on with AS lite. I am asking the opinions of experts like us and also the urologists.
Rick, Thanks for your concern. I am coming from a good place. I am sorting out what my fellow patients and expert doctors have to say. I am not acting rashly. I am weighing the pros and cons. I think I'll be fine either way. Howard
I was diagnosed in May this year. The urologist sent my wife and I to an oncologist radiologist who explained radiation. Then, I went to my urologist and he asked if I wanted hormone shots. I said no to both and went for a second opinion. I’m now with Memorial Sloan Kettering in NYC on AS. Another place we had gone to for a second opinion wanted me to get an ultrasound biopsy. I declined that offer. Looking for support for AS is not easy. Many support groups have men who have had treatment. I can’t relate to them. In fact, I don’t think about it much. I could use support from AS patients. If you feel though that it’s time to move on, then go. Life is only so long. I’m 72. Living each day the best I can.
BTW I am age 66 and a Gleason 7 (3+4). Will continue to follow up with semi annual or sooner PSA’s and MRI. Prior to recent biopsy doc also did CT and bone scans to ensure no spread outside the prostate. That was reassuring. My vote for you is stay the course but obviously a personal decision. Take care.
Say it ain’t so. I read in disbelief that you were thinking about abandoning Active Surveillance. Particularly with no change in status of the cancer. Other than AS fatigue which can be challenging why abandon now at the age of 76? Sorry if I appear negative but based on the odds the majority of us will not live into our 90’s. That to me is a stretch goal. I too have been monitoring for 13 years semi annual PSA’s (recent 20) 3 biopsies with recent no change in grade. I think until a significant change in size or grade I’ll stay the course. Don’t want to risk treatment side effects. Wish you well with your decision. PS you have my email if you want to DM
Thanks, matey.
I am still mulling: Should I keep looking for prostate cancer.
Dr. Zeitman is a great doctor.
Howard
I say, Stay the course Captain! Minor inconveniences that provide me with reassurance are A-OK in my book! I am 70 and was diagnosed in 2017 with 3+3. I've had 3 biopsies and 2 MRI's. The moved me to 3+4 two years ago after the first MRI guided Biopsy. No change in two years. DR. Zeitman at MGH keeps a close set of eyes & a finger on me!!! Onward Captain!