My first post. I had a 4.2 PSA with a 4+3 Gleason biopsy diagnosed 06/20. From the start I have been treated by “the best” in MN.
Plan A - was a RP in 07/20. The post path report showed a larger 4+3 area than estimated in the biopsy but the capsule was intact with margins, seminal vessels and sampled lymph nodes all clear. No HT or EBRT followed. Continence and potency preserved enough for me (and my gal) to be happy. My PSA remained undetectable for over a year and then showed up at .16 on 11/21 and rising since. Went in for PSMA/CT and MRI on 04/22 with a PSA of .46. Imaging detected no PCa. Do we wait and re-image or go with the most likely scenario?
Plan B - Given the RP pathology, the rate of PSA rise the decision was made for 33 sessions of EBRT to the prostate bed from 06/22 - 07/22. No HT was administered. My 4 month PSA in 11/22 was .61 so the velocity slowed (some positive effects) but clearly the PCa was not just in the prostate bed. Just completed a PSMA/MRI which found "only" a 5mm PCa in the right pelvic lymph node.
Plan C - I am about to embark on HT (Lupron/Eligard) for 12-14mos with a 3-5wk EBRT session about 4mos into the HT. I am curious to know how many have traveled a similar path as me, whether my Plan C seems like my best option and if so perhaps what to expect? Also I admit I am wondering how Plan A failed given my path report. Can PCa still "sneak out" given my all clear path report?
Thanks in advance,
Finn
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FinnO
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If there are not distant mets and there is a positive pelvic node, discuss having whole pelvis radiation (they need to avoid the areas already irradiated) and 2 years of ADT plus abiraterone. No exactly your situation but his could give an idea about this type of treatment
It is water under the bridge as to why Plan A was not sufficient. Our knowledge is imperfect. Our diagnostics, although always improving, are imprecise. People make mistakes, probably more often than we will ever know.
Also so many of the “rules” we depend on are not 100% ironclad rules. They represent our best guess as to how things will work out most of the time based on plenty of previous observations.
I do agree with you. I don't have the energy to dwell on why but I'm an engineer so knowing why is in my blood and asking why may help those that come after. I wish I had found this site a year ago. Thanks for the encouragement.
You may be a step ahead of me, but some similarities in my case. A couple of my oncologists say they've seen a lot of success with the "radiate what you see on PSMA scan" approach.
After my local radiation gave me 7.5 years of undetectable PSA, I had taxotere plus prophylactic radiation of additional lymph nodes above the local area.
The day of my RP my PSA was 14. Microscopic cells in the margins, due to my surgeon being considerate of my nerve endings... PSA then undetectable for almost 2 years, at which point PSA rose steadily to 0.42 and PSMA scan found one pelvic lymph node lit up. My doc wanted me on Lupron and I refused. At which point I began Orgovyx. It's been 6 weeks now on the Orgovyx and my PSA is undetectable and I have NO side effects other than a VERY MILD hot flush at night, where sticking a foot outside the covers takes care of it almost immediately. My testosterone is near zero, I have decent sex drive, all things considered, but the old pecker is not responding. I should relay here that it took just under one year after RP for my erection to return to a point I could use it, and it's been fine since then. But I expected this ED to occur while on the Orgovyx. I begin radiation mid January and will add Nubeca as well.
I would also mention here that I will re-evaluate my condition in six months. With the goal of stopping all hormone meds. I am of the opinion that less is more.
I am asking about Orgovyx. Trying to decide if I would be willing to put my foot down on one vs the other given I have no experience (yet) with someone basically robbing my nuts from me. Besides some of the obvious (pill form, perhaps milder side effects) is there a reason from a clinical approach one would choose Lupron instead of Orgovox or visa versa?
Hey... slowly working on the new plan with some new players but just wanted to say thanks. I refused Lupron and went with Orgovyx. It's only been 19days but so far so good. No real noticeable side effects yet except my right testicle has a dull ache to it. Not sure if that is side effect? My PSA dropped from .7 to .1 in that 19days so a good response so far. My new MO was happy to see that I had advocated for the Orgovyx. He prefers it. Did you ever discuss/have radiation for the pelvic lymph nodes?
Some say PCa can "sneak out" even before the primary tumor is clinically significant enough to be diagnosed. In most cases, though, those "micro-seeds" may be planted in bone or other tissue simply to remain dormant for decades, if not forever, and never become what we call "metastatic cancer" (of the kind that can kill you).
Some men can live into their nineties and die of other causes than PCa without ever having known they had (non-lethal) prostate cancer for many decades. Many, of course, are not so lucky... and here we are.
And if in the meantime I have a "Fred Sanford" or get whacked on my motorcycle or buried in an avalanche..... all the worrying about PCa will have been for naught. 🙂 Good to try and keep it all in perspective..
Did you have Decipher testing performed on the RP specimen? The literature does support adjuvant treatments if you have a high score independent of other baseline parameters which sound to be good in your case.
I do not see it in my path report which is interesting given the Mayo is big on genomics but it looks interesting and am asking about it. Not sure if they keep tissue around or if so, for how long.
The pathology department is supposed to keep your specimen for ever. You would have to request Decipher testing which is from a private company. My insurance eventually paid for mine which did change my treatment plans entirely. I had nearly identical path report as yours. No plans for any additional treatment after RP. Can look at company website which gives good retrospective data. I’m not sure if it would change anything for you currently since you are starting treatment. Would consider adding a second generation ADT like abiraterone if you’re going to do hormonal therapy. Data from stampede trial would support this. Best wishes.
I have not taken the first HT shot yet due to logistical complications but even so it seems this is a very worthwhile data point and I can always switch gears if need be... right? I have a note into my surgeon and am looking into the Decipher test request. Thanks again for this. Happy Holidays.
Nice heads up on this. Turns out my surgeon can (and upon my request) is in the process of ordering a Decipher test on my tissue. Another arrow to add to the quiver. Thanks!
I will attempt to answer Plan A based on my Research Professor Medical Oncologist. Note your treatment yielded about a 92% success rate in 2003 for a Gleason 7 (4+3). Incidentally Brachytherapy with a short course of IMRT yielded the same results.
MO told me it mattered not which procedure I had done so don’t second guess yourself. You most likely had distant spread before your original DX. The reason, micro-metastasis. Unseen mutant cells that escaped your prostate traveling through the lymphatic and vascular systems.
Allen writes about triple therapy. It would be an excellent start. Me? There was no triple when I went metastatic in 2004. I had chemotherapy with hormone therapy. And with that I was in a clinical trial setting. Part of my trial included alternating with a second chemotherapy and two orals; plus heavy daily Prednisone. I had either Lupron or Eligard for 6 years
I guess someone had to be in that 8% but hey at least I can claim to be an optimist (my first thought was: I'm gonna be in the 92%). ¯\_(ツ)_/¯ I am looking into the triple therapy as well. Thanks for the well wishes.
Very similar with some small adjustments. Had 3+4 Gleason ID'd in 2019, had RP in May 2019. Like you, no SV, no Lymph node trouble, but there was a small extension into the "capsule" and that impacted nerve and I suspect continence. PSA was low but not zero (.02-.04) for about a year, then it started increasing with a doubling time of about 6 months. When it hit ~.2ng/ML we had the PSMA PET scan at UCSF, which showed a small uptake at T11 Lamina and a general "glow" in the lymph glands around the sacrum. Stanford performed Cyberknife on the T11 area, and then 25 sessions of IMRT at Stanford South Bay. Just after the PSMA/PET results came in, I started 30D Bicalutamide, followed by Eligard injections every 3Mos. I had a slightly elevated BP so we took a few months then started Aberaterone Acetate (4x250mg) daily. We're following the STAMPEDE protocols which call for all this happiness for 24 months. While on this therapy strategy, my PSA has been below testing limits and Testosterone has been less than 10 ng/dL. (Testosterone had been ~700 before ADT). I had a dexa scan recently and the bones are OK. I had been worried about the effects, particularly of the low Testosterone, and aside from a little weight gain and muscle definition loss, folks think I'm easier to be around now. Hummm...
So ... here I am worried about HT turning me into a whining P.I.T.A. and you're saying there's a possibility that my gal might want me to stay on HT forever? 😬 All kidding aside, I'm an above avg active person so I am not looking forward to the side effects of this HT journey. Thanks for the details. All good info as I move forward.
like you, I was freaking out about how ADT was going to change my life. Well I’m 8 weeks into ORGOVYX which I virtually now change in my life. Very mild hot flashes. That all! Yes, you MUST introduce weight training into your routine. Imperative for several reasons. And BTW, my doctor wanted me on Lupron along with all the other accepted standards of care and I insisted on ORGOVYX instead. He also wanted to put me on Nubeqa immediately. Said no to that as well. Do your research, your care is up to you.
Thanks for this. Good to hear. So they prescribed Lupron + Nubeqa and you are now just on Orgovyx? I am "scheduled" for Lupron + 30 days of Casodex. I meet today to "get" started on Lupron but it might just end up being a discussion. I hate to delay treatment but the research/education load has grown with Plan C and I am admittedly a bit behind in my studies. Some things are pushing my "hold on a moment" button regarding my current care plan. I lift twice a week in a 6-7 day workout week but will shift to more weights (my joints will be happy with that as well). If you don't mind me asking, besides the obvious (RP and ORGOVYX), what is your post RP story/status so far? Sounds like we are on a similar journey.
I remember looking at that bottle of Bicalutamide and pondering whether to step on the rollercoaster right then or wait a day. Pointless. Ultimately, for me the HT process has not been anywhere near as traumatic as I thought. Lupron took a while to set up the minor hot flashes. Prednisone gave me a little fit in the very beginning, felt a little bloated. But all that worked out over a few weeks. Odd thing, with Testosterone being <10 I was surprised how little strength I've given up. I can still drop a 24" dia Madrone tree and split it for firewood - I watch the pace at first but ultimately my rate is nearly as good as before HT. It's a matter of staying active. Like most of us, I had a big wall built up about ADT. I'll be happy to be off it for things I can't detect (bone density, mental acuity etc), but then I'll be watching PSA more attentively.
Thanks for this.... less stress and positive thought is important to the treatment plan as well. Here's hoping I get purchase out of banked up "active credits". Cheers and best wishes to you.
Last point, I did the Decipher test about the same time as the PSMA/PET scan, I can't remember exactly if it was 68pts or slightly higher. Aggressive. And we also realized exactly how aggressive from the PSMA/PET. So it wasn't uniquely valuable. We already knew it wasn't happy staying on the farm.
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New guy just looking for information as I start this journey.
Next step. Some advise please
Just getting started
Received results today from Axumin scan performed last Thursday. They plan to start me on ADT with radiation in 8 weeks. Thoughts welcome.
Mets to lungs and lymph nodes need some advice 
