Lots of great posts and discussions on this site. I thought I'd come aboard and get some feedback.
58 yrs old great health except for Gleason 4+4 = 8, in 3/6 biopsy cores (one side of prostate). Not sure why they only took 6 cores. PSA 24.1 back in November. Did a bone scan and a question mark in one vertebrae and lower pelvis so I'm waiting to get booked for a CT scan. Suspecting (hoping) anomalies are from running and other sports over the years (and I do have osteoarthritis in hands), but any suggested treatments from urologist are pending. One thing I do know is I need to be informed because he is a production-line type of guy and if I'm not on top of things he's on to next patient.
I've been reading the medical literature a lot. Not my field, but I can get decent sense of the directions of treatment. Would love to skip CT scan and go straight to a more advanced PSMA- type scan, but these things are less available in Canada. That being said there is a clinical trial which I am eligible for (because of bone scan questions) testing 8F-DCFPyL (PSMA) PET/CT, except that it is 8-10 weeks out for treatment.
I've read that delaying treatment is reasonable for "slow growing" prostate cancer, but when I took 2 weeks off from running in October (a bit of a personal experiment to see if all the downhill pounding I was doing affected PSA (read too much about "false positives" online)) my PSA shot up to 37.4. Yikes! Started exercising again and about 3 weeks later after biopsy PSA dropped back to 24.1. Anyway, the 13.3 point change in PSA provides a bit more urgency to my thinking about treatment, exercise control or not.
Speaking of clinical trials, the OPTiMAL trial is an ongoing follow-up to the ASCENDE-RT trial and I'm eligible for that. I like that in the OPTiMAL trail they are using advanced imaging/staging (including PSMA PET/CT) to better design the radiotherapy plan, but I would still have to drive into Vancouver daily for 5 weeks for daily radiation and then be on hormone therapy for up to 18 months. I'm not against hormone therapy at all, but would prefer not for the cardiovascular and other issues (or have it reduced length if possible). The researcher pointed out that I needed to consider if the hormone component would make the study a good option for me or not. Jury is still out for me on this one, but a decent option.
On the research front, there is a new Canadian SBRT (ASCENDE-SBRT) study that is also coming (I'm presuming also) to BC some time in 2023. But even if it is is sooner rather than later, I might get randomized into the non-SBRT arm. Prefer not to wait many months just to have that happen. I did find a clinical trial down in Seattle (Stereotactic Body Radiotherapy for Stage I-III Prostate Cancer) which is really straightforward that is on my radar too. Need to contact to see if eligible. Says they are still recruiting.
I do like the idea of hitting it (the Pca) hard and precisely as possible and then diet/exercise/attitude to recover. One reason radical prostatectomy makes sense, especially robotic. If you can definitely "get it all". After hearing from relatives that have been in both camps. I would only take robot route, but I think even though there is a da vinci robot in Vancouver I would still have to pay out of pocket. Anyway, long term side recurrence rates in literature seem similar within surgical and non-surgical options (after surgery it came back in my father about 15 years later, and took him in another 5 years at 86 (he left in untreated )). That said, a relative is 10 years Pca free after surgery, though with significant side effects.
I'm leaning towards seeing if I can do SBRT (maybe down in trial Seattle). There is no hormone therapy which I like (at the same time I hesitate and question "why not?") My sense is that despite a one-week sojourn in Seattle it would be more streamlined and perhaps as effective as the androgen deprivation therapy, external beam radiotherapy to the pelvis and an LDR brachytherapy boost I would get in BC (within or not within a trial). Of course before anything, I need to get results of at a minimum a CT scan.
Any thoughts or comments would be appreciated!
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LongTimeRunning
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I think the PSMA PET/CT is important in your high risk case to rule out distant spread. Even if nothing shows up, I think whole pelvic radiation and at least a year of ADT are necessary.
For sure would prefer to have the PSMA PET/CT to have more info. I did just get a last minute spot for a CT scan, will be going in Jan 1 for that. Those results of that will be my next data. Biopsy indicated that the PCa was confined in within the capsule (no Perineural invasion, EPE or seminal involvement), but of course that is not definitive. My cousin (same age, poorer health) had a similar diagnosis 10 years ago with higher PSA, but so far not spread after a decade of surgery, albeit with side effects. Keeping my fingers crossed for him.
I looked up the Decipher genomic score trial, and it seems like that one has ended? It does sound like it would be vital info to have. I'll browse some of the US trials to see if that treatment is an option, though it might be out of my catchment. Thanks for the suggestion!
Thanks for the link. I'll spend some time reading through the study design. Looks like a big study with lots of locations. I really like the idea of re-staging treatment based upon factors and the genetic score seems really useful.
While the study is promising, I would need to be sure my Cdn extended insurance will cover it. According to the following site, insurance is supposed to pay for at least some, if not all of the treatment:
As I mentioned, I'm not against hormone therapy, just cautious. Found out my father had his heart attack around the same year he had prostate surgery. I was overseas at the time for an extended period and father wasn't exactly open in talking about his medical stuff (I didn't know he had the prostate surgery). Don't know if he was on hormone therapy at the time, though my brother recalls he was taking some injections. My oldest brother also had a heart attack a couple years ago so cardio risk is high in my family (which can be exacerbated by hormone therapy). Both older brothers on statins and no PCa. I (better health and diet) no statins get PCa. Some literature suggests a protective affect with statins, others not so much. Who knows! Funny, earlier in this year I was thinking of getting my borderline cholesterol in check with statins to hedge my bets. I accept that I got PCa, but if knowing why I got it (other than pure genetic lottery) can help keep it away from my 3 brothers and son and anybody else I would like to know!
Still, I won't rely solely anecdotal evidence for treatment especially with newer options for treatment/treatment plans (still curious about cyberknife, for example). My cousin, his father, my father all had surgery, all with notable urinary issues for years afterwards. In contrast, I have an in-law who had robotic surgery about 14years ago (Gleason 9), with better results but not long after they needed to radiate his bladder because it had spread there. He's been cancer free since then though. I think he did 6 months of hormone treatment upfront. Or something like that. He can't remember exactly.
Longer term research needed, but important for me as I weigh options involving hormones and possible long term personal risk factors, one of which is CVD. The use of statins might help with my decision making, even if role not conclusive at this point (say I was just taking them anyway for cholesterol management).
Agree. My urologist was doing production line cystoscopies. I think it was less than 3 minutes from the time I entered the procedure room and when I left. I expect him to recommend surgery. I think that he is competent, but a little too quick for my liking. Being informed is the first line of defence and I definitely will want to get another referral after CT scan results.
It does seem like the Gleason score is only one point of information. For me, I would have like to have more than 6 cores taken for more info. I should have asked why not 12, but during the biopsy I was too busy chatting with the doc to count. He also told me he didn't see "anything major" after he finished which put my mind at ease. It took 2 weeks to get the biopsy results back, so long that it almost had me believing nothing was found. Good to see that you were proactive.
Good advice. Leaning against surgery. Even before bone scan urologist said that "seeds weren't an option" and that he is assuming that the PCa is also on the other side of the prostate even if the biopsy only showed one side. Could be true, but waiting for result from CT scan. Next step will be to consult with oncologist. I don't have a formal RO yet, but one form the ongoing OPTiMAL trial in Vancouver has kindly responded to my inquiries.
If I participate in OPTiMAL, the PSMA PET would help see if PCa is confined to one side of the prostate (50% or less) which would allow them to target the radiation more accurately (otherwise if >50% probably standard dose to whole prostate), although I was told they are still learning how to use PSMA PET for re-staging (of course, that's part of the purpose of the study!) The ASCENDE-RT showed good success with combined external radiation and brachytherapy (and HT), but with significant risk for side affects hence the study design for re-staging/better targeting (similar to the premise of SBRT).
He also told me that rates of recurrence after surgery for high risk prostate cancer are underestimated (caveat: opinion of an RO). I have 2 relatives cancer free after ~10 and 14 years surgery (both were higher risk at surgery than I am now), but as mentioned I'm leaning towards RT, mostly for side effect issues.
Even with robotics it is difficult to "get it all" given the very, very thin margins between the nerves that control erections and the prostate tissue. I know two folks that have had RP and both ended up having to have radiation anyway. And they deal with some urinary issues.
For high risk prostate cancer there are much better outcomes for the triple treatment of EBRT or SBRT, ADT, and beam radiation compared to RP (looking at recurrence and life span). Just finished up my 18 month regime - feel great - now just on monitoring.
G 4/5, no spread outside prostate, 66 yo -- very active. Climb, ski, mt bike. Now added 2x weight training/wk to compensate for ADT
Conbio great to see your off 18 months and feeling great! Hope the weights help you.
I don't where my treatment is going to take me yet, but I'm lifting more now myself than I used to in addition to running and biking to prep my body 6/7 days a week. I'd be doing this anyway, just more weights than just cardio now. The biggest doubts I'm working with are regarding ADT affects. I can deal with the temporary effects during treatment, more concern with longer term because of cardio, osteoarthritis, dementia issues in family history. My knees of all things are fine, but moderately severe osteo in hands (and hopefully a little bit in spine that is not pca). Likely will still end up with the combo treatment, though.
Update: looks like some Pca cells got away and lodged in a couple spots on my pelvis and and L5 (results of bone/CT scan). Apparently relatively low volume as thing goes and I'm still asymptomatic (no bone pain). Finally got in to see MO this month and will start ADT next week with some options ahead for clinical trials. I'll be looking for some new feedback on the advanced forum.
"One reason radical prostatectomy makes sense, especially robotic. If you can definitely "get it all". "
Your recent post -- "some Pca cells got away" -- pretty well settles that "can you definitely get it all?" question with a "No, you can't".
I was going to suggest checking the 5-years recurrence rate after prostatectomy, with PSA=24 and Gleason 8. (My guess is that it's quite high.) But finding "hot spots" on the CT scan is definitive, for you.
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