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Gleason 8/low PSA treatment plan gone wrong? Is there a standard?

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Posted 3/1/2017 4:17 PM (GMT 0)
Hi all,

My family is currently waiting for a pathology report regarding a lesion on my dad's spine, which has shown up coinciding with a rise in PSA over the last year. the docs are pretty certain it's cancer and the uro thinks it's likely anaplastic.

I've been going over the trajectory of events and i really feel like the uro messed up as he just ignored the chemical recurrence which started in Jan 2016 and rose steadily since - he didn't even do a scan or anything. and now the lesion shows up in Feb 2017, though it's likely been there since at least early 2016 as that's when my dad first started feeling a little pain in that area.

Is this a normal way to monitor a gleason 8/low psa which is often more aggressive? to just wait and see until more severe symptoms show up?! it sounds ridiculous to me. was our mistake that we were with a uro and not an medical onc (we didn't even know that was an option and the uro never recommended one or said we should work together with one)

In addition to that, he only measured my dad's PSA 3.5 months after RP surgery, at which point it was 2 (it was 4 pre-surgery) but waited another 3.5 months to start hormones and radiation. is that normal?! could the cancer have spread at that point - that 7 month period between surgery and the start of hormones/radiation?

I just feel sick because even at the time, I was very upset about the long waiting times but he told me it was fine. Now i wish i'd pushed harder. We just didn't know who to actually see and how and he told us to trust him so we did sad what a let down. and now we're dealing with the possibility of anaplastic cancer and it's just too much. I'm so scared and what's haunting me is that i feel like this could've taken a different path if we'd just known to get a medical oncologist on the case instead of this uro who is so lax and treated this aggressive gleason 8 like it was a slow growing cancer that we can afford to "wait and see".

Am i being harsh? is that the standard way it's done?! i'm just so full of regret and i don't know who else to ask these questions to or what to do. these last few weeks have been so horrible and overwhelming and i feel totally helpless sad

Post Edited (snowcake) : 3/1/2017 9:21:16 AM (GMT-7)

Posted 3/1/2017 6:01 PM (GMT 0)
snowflake-

So, as I understand it (and it would help us all a lot to respond if you include a signature with his PC history), he had RP, and 3.5 months later, he had a PSA of 2. He began hormone therapy and salvage radiation 3.5 months after that. You are wondering if he was treated according to standard protocols. From the info you've given, it sounds like he was.

3 months after RP is the standard for the first PSA. And a PSA of 2.0 at that time was very high. At that point, it had most likely already metastasized. If he were given one of the experimental new PET scans, they might have found a metastatic site, but given that it may be a rare form of PC, it is more likely that it would not have shown up. And even if it had shown up, nothing would be different in his treatment and prognosis. He was treated within a timeframe that most would consider adjuvant RT.

He might have referred you after that first PSA to a radiation oncologist (not a medical oncologist) who might have started his hormone therapy sooner, but I really think that his PSA of 2.0 (not down much from the original 4) was a clue that it had already escaped the prostate before his RP. You didn't mention whether he had a bone scan when he was originally diagnosed, but with his low PSA (4.0) that usually shows nothing, especially when the tumor is lytic.

I can see you are looking for someone to blame. I can also see you are obsessing over possibilities of what is there when you have no knowledge. Your anxiety is understandable, but is not helpful to you or to those around you. When I was similarly anxious, I learned a practice called Mindfulness that helped keep me focussed on the here and now (where my attention is really needed) instead of on past recriminations and regrets or the endless nightmarish fantasies about the future. It is something you might want to look into.
Posted 3/1/2017 7:09 PM (GMT 0)
hi tall allen, thank you again for your wealth of information and insight and knowledge. it's been so helpful the last couple of weeks.

it's good to know that the early path was the standard path that should have been taken. he did have a bone scan/MRI at the time and it was clear. the cancer tumour was confined to the prostate gland, a high volume and i believe it was stage t2c. negative margins/no other involvement (visible)

that was back in 2010. he's been doing so great since then until the last few weeks. i had no idea the checmical recurrence had happened over a year ago (i live across the ocean so can't go to the appointments) but the uro kept telling him it was fine and not to worry, and my dad's response to my questions about the psa test were "undectable, doc says not to worry"

i guess i just feel like we had a window of opportunity to take action a year ago and lost it. and maybe the whole course of treatment should have been more aggressive and different from the start. i know it's too late now to look back and regret and rewind and analyse though. i'm just so scared and so sad. i don't know what to do and i feel like i'm losing my mind. i can't sleep or eat and all i can do is go over everything and feel like i should've done more or been more vigilant and maybe we could've got this sooner. i'm not showing these anxieties to the rest of my family and showing optimism and just trying to help out here as much as i can. i just wish i'd know more from the start in 2010.

here is my sig info, it looks like it was replaced when i edited my post:

Dad

Jan 2010:Gleason 7,8 post-surgery / PSA 4 / T2C
Mar 2010:RP
PSA after RP:2 rad&hormones

Oct 2013:Lupron stopped/PSA 0

Jan 2016 Chemical recurrence 0.04
Oct 2016 PSA just over 1
Feb 2017:PSA 0.45. mixed bone lesion T6 spine, surgery for spinal compression. PSA 0.45. Casodex/Lupron

Doc suspects anaplastic PC as PSA low/lesion seems growing quickly/unusual spot.Pathology report coming

Post Edited (snowcake) : 3/1/2017 1:10:32 PM (GMT-7)

Posted 3/1/2017 8:07 PM (GMT 0)
another question: what is the best type of imaging to detect lytic lesions? and what would you recommend we do to detect any cancer that's been missed so far? my dad is having severe pain in his ribs (symmetrical on both sides) and we're worried it's more tumours that weren't picked up last week. is it possible to grow that fast?!

Post Edited (snowcake) : 3/1/2017 8:08:30 PM (GMT-7)

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