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Posted 4/14/2022 11:22 AM (GMT 0)
Hi Everyone,

I just found this forum yesterday and am impressed with the caliber and quality of information being shared. Perhaps you can offer some advice to me. Here is my case:

61 year old diagnosed in December 2020 through a fusion biopsy after PSA rose to 7.9. PSA also rose from 4.5 to 6 the previous year and a regular biopsy performed then was negative. My 2020 biopsy was a mix of Gleason 3+3 (3 cores), 3+4 (1 core), and 4+4 (1 core). Decipher score is intermediate risk.

January 2021 - Surgery with Dr. Tewari. Pathology was Gleason 7 (3+4), with negative margins, nodes and seminal vesicles.However, I did have perineurial invasion and bladder neck invasion. Stage PT3a.

March 2021 - PSA results were 0.05. I was told this was technically undetectable, but was worried already.

May 2021 - PSA results were 0.119. I was told this was not actionable. Scheduled a test for 6 weeks later in June to monitor closely.

June 2021 - PSA results were 0.12. Scheduled another test 6 weeks later.

July 2021 - PSA results were 0.18. Again, I was told this was not actionable but scheduled another test for 6 weeks later. (I now regret not scheduling this sooner.)

September 2021 - PSA results were 0.32. Scheduled another test 10 days later to confirm. Results then were 0.35.

October 2021 - began EBRT for 70.2GY in 39 visits along with 6 month Lupron. Completed radiation on December 8, 2021.

January 2022 - PSA <0.01

April 2022 - PSA <0.01

Here's my dilemma: I am very encouraged by the recent PSA results, but aware that my pathology and PSA doubling time is very concerning. Since this may be my last chance to get this beast under control, I'm wondering if I should extend the Lupron since men with high risk disease seem to stay on it for at least 18 months+. My RO thinks 6 months is sufficient.

Separately, I have changed my diet to be primarily pescatarian with a lot of vegetables. Also, I am active walking 10k steps per day and either cycle for 30 minutes or lift weights. I have tolerated the Lupron pretty well with just the flashes and some fatigue which hits in the evening at the end of the day.

Any thoughts about staying on Lupron or not would be much appreciated as the time to extend ADT would be now. Also, any thoughts about the recent PSA results, which while undetectable, were suppressed due to the Lupron.

Thank you and I look forward to contributing to the group.

Rick

Post Edited (Rick I) : 4/14/2022 1:44:16 PM (GMT-6)

Posted 4/14/2022 9:01 PM (GMT 0)
Rick, welcome to the forum. your question is somethig you should probably discuss with your RO, or maybe better, a Medical Oncologist. Dr Oh, at Mt Sinai, is very reputable Medical Oncologist and Dr Tewari thinks highly of him.
The one thing i feel should be stated is that extended Lupron treatment is not without a downside. It will take longer for your testosterone to recover. And it can put you at higher risk of cardiac issues, especially if you already have heart disease. My Triglycerides shot through the roof when i was on Lupron.

Your story is interesting to me. I too had surgery with Dr Tewari, and at the 2 year mark my PSA became detectable at .02, then over a two year period it went slowly, up to .08. All the while, Dr Tewari told me it was not something to act on. I made a decision to see Dr Zelefsky at MSKCC as well as an RO at Cleveland Clinic in Florida. Both told me that more recent studies show earlier treatment is better, and recommended i act.
Which i did. I had 6 months of hormone therapy. However i was a Gleason 7 (3+4).

So on the one hand i'm not surprised that you were advised to do nothing. On the other hand, with a Gleason 8, I am a bit surprised.

Again, ithink you should have a serious discussion with your RO or an MO (I VOTE MO).
Dr Tewari is terrific. But he is a surgeon, and his work is done.
Good luck and please keep us posted.

P.S. I dont beieve that doubling time is meaningful at the low level of PSA you had. I could be wrong and if i am then most certainly someone will correct me. But thats my understanding.
Posted 4/14/2022 9:14 PM (GMT 0)
Rick, I've read your post several times today, but I don't have the experience or knowledge to offer you any insight. However, Pratoman does have pertinent expertise and his guidance is sound. It's a difficult choice for you.
Posted 4/14/2022 9:15 PM (GMT 0)
was your doctor in denial that his surgery failed? salvage radiation should have been initiated well before .2 and from what i see there was no good reason it wasn't
Posted 4/15/2022 1:49 AM (GMT 0)
One can’t correct the woulda shoulda, but I believe I would only do 6 months of ADT while finding a new doctor and setting the stage for a PET scan and maybe one last chance for a full cure.
Posted 4/15/2022 2:40 AM (GMT 0)
Rick - Interesting story but it is what it is and you are doing well now. The duration of ADT before, during and after treatment is anything but settled science. There is a balancing act between the good and bad effects of ADT that is not well understood in my opinion. All you can do is get some additional opinions from oncologists and decide which ones you believe the most. You can also start searching for studies of ADT duration with SRT. Last studies I read seemed to indicate that PSA is an important factor and that low PSA does not benefit like higher PSA does which may explains the limited duration your RO is recommending.
Posted 4/15/2022 12:31 PM (GMT 0)
Thank you all for your thoughtful comments. I am going to look into establishing a relationship with a new MO and will look into Dr. Oh. Thanks for the referral, Pratoman. Also to clarify, my overall Gleason score was 7 (3+4), but I did have one Gleason 8 (4+4) tumor, so I think the overall 7 score is what's driving the 6 month ADT decision along with the intermediate risk on Decipher.

I too have read that initiating salvage radiation earlier (even below 0.20), is becoming the trend but I learned this only after my PSA went above 0.30. In Tewari's case, I think he continues to follow an established playbook ,using the 0.20 level as a benchmark, but with the advent of new scanning technologies along with some studies that are attempting to identify risk earlier, the timetable to initiate salvage radiation keeps moving earlier to lower levels of PSA.

I think all of your comments point out the need for us to keep up with the science and educate ourselves together. This forum has already been a huge help to me so thank you!
Posted 4/15/2022 4:10 PM (GMT 0)
If a Gleason score in a post-RP path report is G7 (3+4), it is of no consequence whether there was a G8 (4+4) lesion at biopsy. The prostate-wide percentage of tumor that was pattern 4 was less than 50%. (Whether the prostate-wide pattern 4 was 5% or 45% is a different story, as is the bladder-neck invasion.)

Djin
Posted 4/15/2022 5:36 PM (GMT 0)

Rick I said...
Thank you all for your thoughtful comments. I am going to look into establishing a relationship with a new MO and will look into Dr. Oh. Thanks for the referral, Pratoman. Also to clarify, my overall Gleason score was 7 (3+4), but I did have one Gleason 8 (4+4) tumor, so I think the overall 7 score is what's driving the 6 month ADT decision along with the intermediate risk on Decipher.

I too have read that initiating salvage radiation earlier (even below 0.20), is becoming the trend but I learned this only after my PSA went above 0.30. In Tewari's case, I think he continues to follow an established playbook ,using the 0.20 level as a benchmark, but with the advent of new scanning technologies along with some studies that are attempting to identify risk earlier, the timetable to initiate salvage radiation keeps moving earlier to lower levels of PSA.

I think all of your comments point out the need for us to keep up with the science and educate ourselves together. This forum has already been a huge help to me so thank you!

one reason i'm against surgery for prostate cancer is when surgery fails there is often denial and indecision about if and when to initiate salvage treatment, and that could make the difference between a cure and stage 4 cancer

as far as your doctor knew you were G8 going into surgery? with G8 you are seldom one and done with surgery as a primary treatment. there should have been a clear contingency plan to initiate salvage treatment if PSA rises, and you were NEVER undetectable! yet he let your PSA rise and kept testing. that just blows my mind

anyhow i'm not trying to make you feel bad and i know there are no do-overs but maybe the next guy can benefit from your experience. good luck to you man
Posted 4/15/2022 8:52 PM (GMT 0)
“One can’t correct the woulda shoulda” ….yeah but……
F8 is right, put it out there, might help someone new to the process and they will pause before following whatever the surgeon dictates.
Posted 4/15/2022 9:33 PM (GMT 0)
Rick, it sounds like you made the best decisions all the way through this process, based on the information you had available to you. So at this point, the only thing to do is to look forward, not back, no regrets. You will get your arms around this, and get it under control, at the very least, so that it oes not affect your QOL for the foreseable future. Thats whats importat now.Hang in there.
Posted 4/15/2022 10:23 PM (GMT 0)

Rick I said...


Here's my dilemma: I am very encouraged by the recent PSA results, but aware that my pathology and PSA doubling time is very concerning. Since this may be my last chance to get this beast under control, I'm wondering if I should extend the Lupron since men with high risk disease seem to stay on it for at least 18 months+. My RO thinks 6 months is sufficient.

Any thoughts about staying on Lupron or not would be much appreciated as the time to extend ADT would be now. Also, any thoughts about the recent PSA results, which while undetectable, were suppressed due to the Lupron.

Thank you and I look forward to contributing to the group.

Rick

Rick,
It appears your PSA was 0.35 when ADT and RT started, which was about 6 months ago. So yes, it's too early to know if your undetectable PSA is due to successful RT or if it's being suppressed by your 6 month Lupron shot. If you choose not to continue with Lupron, it will still be a while before you know the answer.

It wasn't all that long ago when around 0.2 PSA was the trigger for SRT. I think there are probably still a lot of doctors who continue to follow the 0.2 standard. It still may be the official SOC, but I don't know. My point is that a 0.35 PSA isn't horribly off the mark. I definitely would have expected a "rock star" surgeon to be more attentive to what is happening beyond surgery these days.

I think you still have a good chance at a good outcome. As far as the duration of ADT, if you are tolerating the Lupon well enough, maybe another 6 month shot could be viewed as insurance.

Good luck on whatever you decide.
Posted 4/15/2022 10:50 PM (GMT 0)
PS, A little internet searching brought up some journal articles from 2022 that reference early salvation radiation as starting at a PSA between 0.2 and 0.5. I find that surprising. Most guys on the forum started at 0.2 or lower, as I recall. So, maybe your surgeon isn't as far off as most of us here seem to think. PSA of 0.5 still seems really high to me. I do know there are studies saying that less than 0.1 is best. Who knows?
Posted 4/16/2022 12:09 AM (GMT 0)

mattam said...
PS, A little internet searching brought up some journal articles from 2022 that reference early salvation radiation as starting at a PSA between 0.2 and 0.5. I find that surprising. Most guys on the forum started at 0.2 or lower, as I recall. So, maybe your surgeon isn't as far off as most of us here seem to think. PSA of 0.5 still seems really high to me. I do know there are studies saying that less than 0.1 is best. Who knows?

Mattam, it IS interesting. Said surgeon, in my case, advised that I should wait until and if PSA hit .2 and at that point we would do an auxumin scan (which at the time was the most sensitive approved scan. And he further stated that if the scan showed nothing he would then advise that we wait until PSA hit .4, and then scan again. It made no sense to me. But what do I know.

I’ve often wondered what the rationale was.
To his credit he eventually changed his recommendation and said to treat, not based on my PSA, but based on my state of mind, and how worried I was.
Posted 4/16/2022 12:14 AM (GMT 0)
I'm not qualified to answer your question about ADT and glad you're seeing out experts for their recommendation. That said, I think mattam's comment above is quite reasonable: if you're tolerating your current ADT well then another six months probably wouldn't be that difficult and could be good insurance for you.

Keep us posted as to how this things are going for you.
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