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60% chance of clear margin

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User

Posted 14 May 2020 at 11:43

Hi, I'm new here so please excuse if I mangle the jargon or miss important bits...

56, fairly fit (except... see profile) and active with no known family history, routine test gave PSA 4.5. MRI, biopsy showed all six regions of prostate had some level of cancer, Gleason 3+4, largest core 8 mm, but localised within the gland. Specialist said it was a straight choice between RARP, EBRT or "4D brachytherapy" (4D BT, a form of LDR, I believe) but didn't push me in any direction.

Read a fair amount of stuff. RARP seemed the way most young, fit, localised patients go, so I had steeled myself for that. But the specialist was now insistent that I talk to his 4D BT colleague. There I learned that the surgeon believed there was only a 60% chance of clear margin on the largest tumour (left-mid). In the event it wasn't achieved, follow-up with EBRT and HT recommended. Now 4D BT, even with the addition of 6 months lower intensity HT, seems more attractive.

Anybody else been here? What decided you in the end?

User

Posted 14 May 2020 at 14:58

I think I would want an appointment with the neurologist before deciding - to understand how Parkinson's may affect your ability to recover continence and erectile function (assuming that some nerve sparing was possible) post-surgery, and also to check whether hormone treatment may affect any meds you are currently taking for Parkinson's. If you have serious tremors, would that affect your ability to lay still for the external beam RT if you went for surgery and then did need adjuvant or salvage treatment?

Did the surgeon clarify whether s/he believed that any nerve sparing might be possible?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 14 May 2020 at 18:33

Hi Peter,

You could read the profile of Andy62 who had EBRT and Brachytherapy. He had a similar sounding diagnosis. Check the members list and do a search. He also does some kind of advice group.

I always wanted to have surgery in the hope a clear margin might rid it completely. In a complex case RT can cover a wider area sweeping up areas of risk.

I was 10 years older than you but my biggest priority was getting rid of the growth. Side effects were a long way down my list of priorities. Whereas some people base their treatment on minimising side effects. All the best, Peter

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User

Posted 14 May 2020 at 12:03

Hi Peter

I went through a similar journey last year. At 52 was told RT not best choice as risk of secondary primaries. My ex is an immunologist and runs cancer drugs trials so I has a good sounding board what what path to take. Focal therapies were off the table as like you I have multiple tumours in all four quadrants and one quite close to the capsule ~1mm. Surgery certainly carried some risks but on balance when I found the Prof Whocannotbenamedhere and his stats in terms of volumes and results it put my mind at ease. I spoke to several folks on here and via my local support group who had been under his care and felt at that point a Retzius sparing robotic assisted radical prostatectomy + neuroSAFE was the way to go. I've been fortunate with my outcome as no continence issues although my drips and dribbles took 5-6 weeks to settle unlike others here who had quicker results but it was expected and very individual. On the plus side no real ED issues to speak of plus no loss of length either. Please shout if you decide to go down this path and need a sounding board as happy to help like others did with me during the journey.

Best

TechGuy

User

Posted 14 May 2020 at 14:58

Did the surgeon clarify whether s/he believed that any nerve sparing might be possible?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 14 May 2020 at 18:33

Hi Peter,

You could read the profile of Andy62 who had EBRT and Brachytherapy. He had a similar sounding diagnosis. Check the members list and do a search. He also does some kind of advice group.

I always wanted to have surgery in the hope a clear margin might rid it completely. In a complex case RT can cover a wider area sweeping up areas of risk.

User

Posted 15 May 2020 at 12:28

Hi Tech Guy, thanks! As you say, at <60, long term is key. There's a 2017 study (BJUI 13946) suggesting less than 0.3% SPCs for 600 <60 yr olds treated with LDR BT after about 10 years, which is claimed similar to surgery. Do you know of anything that challenges that or gives even longer term outcomes? Re side effects, RS-RARP seems best I agree, but in a 2018 article penned by the man himself, suggests potentially worse outcomes in margins than AA-RARP. I'm still undecided!

User

Posted 15 May 2020 at 12:36

Hi Lyn, thanks! Have indeed talked to him - he had no concerns about either RP or RT path. At stage 1 (maybe just stage 2) PD, no problem in keeping the torso as still as any other breathing human, but there's always the option to temporarily up the meds or just synchronise the best 'on' time with the RT appt. A surgeon did suggest that the weakening of the urethral sphincter due to surgery (he didn't say which exact kind) could combine with the muscle-wasting tendency of PD to make continence more of an issue. Nerve-sparing was likely, he said.

Edited by member 15 May 2020 at 12:38 | Reason: Not specified

User

Posted 15 May 2020 at 12:39

Thanks Peter, I'll try there.

User

Posted 15 May 2020 at 15:04

Hi Peter

Yeah 10 years seems fine and similar outcomes. I think the general view is secondary primary timelines tend to be further out ~15+ years out but then you could argue new treatments immunotherapy related would be more mature. For me my view was to get it out to reduce probability of metastases...always a bit hit and miss.

Key point for me with RS-RARP was NeuroSAFE so add reassurance with negative margins. NS will eventually be available on the NHS (~5yrs). In my case suspicious cells were thought to be in the margin when live frozen sections were reviewed while I was on the operating table so additional tissue was taken as well as one nerve bundle as a precaution. However histology showed them as all clear so I guess false positive.

Hope that helps and good luck with which ever pathway you choose.

Cheers

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