Options following recent diagnosis

I was 50 (3+4) and T2a on my paperwork (although in both lobes, so not quite sure why it wasn't c). 

I went to see both onco and surgeon. I wasn't offered active surveillance or permanent seed Brachy because "there's quite a bit of it".

The onco started with "before I say anything else I should really say that at your age and fitness, you're almost certainly better off having surgery". His main reasoning was that "we expect you to live 25+ years and in that time-frame you will almost certainly experience negative side-effects from radiotherapy."

I did opt for surgery in the end (it was my first instinct on diagnosis). Didn't need to agonise over it. Seemed like a no-brainer to me. But it might well be different in your case. It was nice to be given the choice though.

If yours isn't very big, you can choose AS and defer your decision until it grows. Prostate cancer often grows very slowly, so this might possibly give you years without the need for major surgery or RT and their potential side-effects. It's worth considering, depending on how you are likely to handle it mentally.

Edited by member 05 Nov 2020 at 23:24  | Reason: Not specified

I presume you had the ‘cheapo’ and increasingly discredited TRUS (up the bum) biopsy, which is why a targeted or template transperineal second biopsy is being suggested, as unfortunately, is so often the case. Buy one, get one free! I had 42 core samples taken during my template biopsy. Two friends warned me against a TRUS biopsy, as they too had to undergo a second transperineal one.

Get one, and depending on the result, go with active surveillance for as long as your medics think you can get away with it.

My mate has been on it for five years, and is doing great, with very close monitoring. No incontinence, no erectile dysfunction, no ‘sort of’ dry emasculated orgasms, no loss of penis size, no months of recuperation from surgery or potentially years of problems with HT and RT. Happy days!

Best of luck.

Cheers, John.

Edited by member 06 Nov 2020 at 06:34  | Reason: Not specified

It also depends somewhat how much you get on with the biopsies. I had problems with both of mine, so wouldn't have been keen on having more of them (not that I had a choice). You might be fine with them.

Hi Richard

Please take a look at my journey 'Retzius sparing RARP + NeuroSAFE journey' 

I was pretty much in the same place as you are now. 

Roughly same age and PSA was hovering around 3.9-4.5 from March 2016 to July 2019 when it spiked to 5.6. Although I had foolishly left it for nearly 18months since previous PSA and 1.5T mpMRI (PiRADS 2) around Jan 2018 as was given the all clear but advised to continue regular PSA's.

Following the PSA spike in July 2019 to 5.6 I went for a 3T mpMRI locally which came back PiRADS 4. Booked in for template biopsy at Princess Grace in London early Sept 2019.

5/10 cores positive with gleason 6(3+3) grade 1 adenocarcinoma in all four quadrants of the prostate.

Advice was it would be fine for AS and this was echoed by the London MDT. 

I wasn't suitable for focal therapy and generally RT wasn't advised for someone <60yrs due to potential for primary secondaries later on in life.

Surgery also an option but local team suggested no need to rush although AS has ongoing impact in terms of PSA anxiety, biopsies and scans.

I spoke to a number of fantastically helpful folk both on here and via local support network. Also connected with an ex who was a cancer trials researcher with a couple of the big pharmas. Also researched myself the risks of leaving the #lowgrade cancer in situ. Basically, the longers its left the higher the risk of potential spread or metastasis. With my case one of the tumours was thought to be very close ~1mm for prostatic capsule. 

I concluded looking at the research and the fact there were fairly recent studies which show that although Gleason 6 cancer is low risk there is still a low probability of spread/metastases. Plus I was also mindful that I may have higher grade cancer although not discovered which is the case ~40% of the time with post-surgery histology results.

Speaking to my ex and some medical friends this was echoed and helped me conclude the best thing to do in my case was to bite the bullet i.e. surgery.

Next steps were to get a second opinion.....

Via the great support network I found a very well respected high volume London based surgeon (Prof Whocannotbenamedhere) and setup a consultation to move things forward.

I decided to have the relatively new technique which is yielding great early stats in terms of continence. ED still very much hit and miss on a case basis plus a realtime pathologist on standby during the op to feel live feedback on tissue taken to better determine safe negative margins.

Procedure I opted for with the Prof was the Retzius-Sparing RARP +NeuroSAFE. Basically less disturbance or the bladder during surgery and disturbing critical nerves associated with bladder control.

I went in for surgery end of November. Great team and really looked after me. Think I closed my eyes about 8:45am and awoke at 11:45am.

No pain post op at all. Some should cramps the next day which were expected due to the gas used to inflate the abdominal cavity. I came home 2 nights later. Felt really good but had to be mindful of following the guidelines set out by the team in terms of recovery.

Histology came back within a week and showed I was indeed prudent not to wait any longer. The grade had increased to T2c Gleason 7 (3+4) and the cancer was more extensive than seen on the MRI. Had I waited longer things might have been very different as the tumour was extremely close to breaking out. 

Catheter was removed 2 weeks after surgery. Very good continence although slight leaks and drips here and there...mostly in the afternoon or when tired. Never any nocturnal issues. I wore pads up until week 6 routinely mostly for reassurance.

From an ED perspective I consider myself very lucky. I had stirrings in that region day after surgery. And have made a good recovery and can have penetrative sex without the need for tadalafil or such like. Although when I'm tired I may need 2.5-5mg tadalafil which basically makes me feel like I was back in my early 20s :-)

So surgery was a bit daunting. The night before I was in autopilot and booked at hotel right next to the hospital as needed to check in for 7am. Amazingly I got 3hrs sleep! No regrets whatsoever and nearly one year later PSA' s still undetectable.

My overall goal was hopefully cure as early intervention but also to buy me time so science (immunology) to catch up so if it does return in the future hopefully there will be other options on the table.

Hopefully that answers a few questions but feel free to ask and I sure there will be many as I had!

Best of luck!

Simon 

Edited by member 06 Nov 2020 at 15:28  | Reason: Not specified

Hi Simon

Thanks for your detailed reply and for taking the time out to send me your thoughts 

I've had a look at your journey which looks like quite a ride!

I'm going to spend the next week or two reflecting on this and maybe arrange a follow-up meeting with my consultant to ask a few more questions, some of which have come to mind through this discussion. It's not something I'm going to rush into straightaway as it's such a big decision which at the moment feels a bit like 'damned if you do, and damned if you don't' !

Really appreciate your input, thank you.

Stay safe and keep well

KR Richard

It is true that the TRUS had fallen out of fashion in many areas of the country so are you sure that is what you had rather than an image guided biopsy?

The problem with the template biopsy is that it requires an operating theatre and with Covid, so many hospitals nationally have had to convert most of their theatres to extra ICU / HDU beds. 

Edited by member 06 Nov 2020 at 18:02  | Reason: Not specified

That’s helps loads. I would definitely ask questions about leaving even a small amount of grade 4 cells for AS. Grade 4/5 are more likely to metastasise as they start to exhibit characteristics which enable them to break free of the extra cellular matrix.

Edited by member 06 Nov 2020 at 20:22  | Reason: Not specified

I had an image guided (mpMRI) TRUS biopsy which graded me at  Gleason 7 (3+4).

My post prostatectomy grading after pathology was unchanged at Gleason 7 (3+4).

Can't really argue with that. YMMV.

Targeted TRUS seemed to work out for me, although I did get given an antibiotic with some very scary potential side-effects (ciprofloxacin), which thankfully I did not get.

Richard,

There are situations where certain treatments are ruled out or one may be considered more appropriate for you. However, in many cases it is left to the individual patient to decide between options. You need to thoroughly research each treatment on offer, including AS and potential side effects and timing. Even then you may react differently to the majority of men so there are no certainties. As regards timing, you have to consider how you feel about deferring potential side effects against the risk that late radical treatment may narrow your chance of treatment option or chance of effectively eradicating your chancer. It is understandable in the light of this that this has to be your decision and one the consultants don't want to make for you.

Corrected as last sentence didn't convey what I meant.

Edited by member 08 Nov 2020 at 05:37  | Reason: Not specified

I can echo John’s experience with regards to TPM biopsy. Arrived at a London Hospital (45mins train/tube ride) around 11am to check in. Taken to room to settle in.

Walked in the theatre prep room about 12:30pm GA administered about 12:45pm and woke up as if I had blinked 45mins later.

Really didn’t believe anything had been done as perception of time was so brief. 

I was up and walking after about 20mins and fine. I was fortunate as no blood in urine but felt like razor blades to pee. Spent 4hrs conducting flow tests and recording the information for the nurse. Had something eat and drink and then released about 6pm

en route home I stood outside train loo as needed to go every 10-15mins given water ingested.

Following days I developed an epic bruise downstairs but after a few days all settled.

Hi Richard,

I had my Brachytherapy in September 2016  at 70 years old with Psa  2.19 Gleason 3+4=7  and 5 out of 20 cores positive.The first Specialist seem to think i would go with his operation for robotic removal but i asked to for a second opinion from the Brachytherapy specialist and decided that was the option for me at my age and possibly less side affects.

So far 4 years on all good Psa down to 0.18 at December 2019 and next test due this month, did i make the right decision in 2016 who knows ask me when I'm 84.

If you click on my Avatar you can see my journey so far ,good luck.

John.

Edited by member 07 Nov 2020 at 14:29  | Reason: Not specified

I had ciprofloxacin after my transperinael biopsy; it gave me the (quite severe) runs by day 2. OTOH whatever they gave me after the TRUS was ineffective, as I got an infection, which required three different antibiotics to clear.

Perhaps these experiences felt worse to me as I normally don't even get colds, so I'm not used to dealing with infections or drug side effects.