Active Surveillance-How Long?

Hi Paul 

I have had pretty much all the same symptoms as you in terms of golf ball and cramping occasionally when bowel full. Originally detected something was wrong based on blood in semen. GP initially ruled out anything to be concerned about. My GP watched things for the next few months and in March 2016 has a PSA which came back as 4.29. Had two further PSA’s which came in at 3.9 and 4.12. After the third he said he is obliged to refer me to a urology consultant which we did. Engaged Sept 2016 and went through cystoscopy, ultrasounds, DRE, urine tests etc and all came back normal aside from that good ball sensation that had been there from nearly start of symptoms. Was assumed to be prostatitis so went on a course of antibiotics for 3 months but not fundamental change to PSA following this. Did three monthly PSA and they all hovered around 3.9 - 4.5 still. In November 2017 it was decided to have an mpMRI which was done on a 1.5T based system. This was done Jan 18 and came back PiRADS 2 so I was given a preliminary all clear with the advisory to have PSA done again in six months. Being a bloke I assumed all was probably ok and left it 18months before having bloods again 🤔🥴 So July 2019 PSA came back slightly elevated at 5.6. Urologist suggested an MRI. Fortunately a new system had become available using 3T. Results came back from this July 19 as PiRADS so we knew something was up.

Next steps were TPM targeted biopsy under General anaesthetic. Result from this came back mid sept at Gleason (3+3)=6 5/20 cores showed adenocarcinoma low grade with max size 5mm. Unfortunately in all four quadrants and one near the capsule. London MDT met up a month later (Oct 2019) and echos the advice of AS.

In the interim I had done a lot of research and also reached out here plus checked others experiences and timelines. Also reached out locally to groups. I’m fortunate in a way as I understand quite a lot about the pathology of cancer and stages etc due to my ex being a researcher in trials in this field.

 From this group I became aware of a relatively new surgical technique (Retzius sparing) which evolved ~2017. Plus the names of Prof whocannotbenamedhere and a few others in London. They use robotic surgery but go in under the bladder which has shown it had dramatic benefits in terms of preserving urinary continence. Plus they use an additional process called neurosafe which essentially means a pathologist checkers out tissue samples in real time during surgery with the aim of a more informed surgical margin (negative margin) if the tumour is still within the prostate capsule. 

I think neurosafe allows for more precise surgical margin if nerve sparing with the neuro vascular bundle is possible.

For me at the age of 52 I didn’t fancy the prospect of ongoing scans and biopsies plus risking the cancer changing. Or indeed if a higher grade existed undetected if that came into play. I was reassured this was unlikely and without establishing a ‘doubling time’ thus far it could be safe to leave for months/years/decades.

With it being multifocal it kinda of ruled out RT(too young) Hifu, nanoknife, cryo, phototherapy etc. Only option for me given my age was to have it out with Retzius sparing robotic assisted technique with a high volume surgeon with excellent stats. Risks are with any operation and general anaesthetic plus some chance of continence issue and depending on nerve sparing that’s possible some issue with erections going forward. 

If the histology echos the biopsy surgery could be curative obviously with caveats that it’s still a metastatic disease although unlikely to migrate at this stage. 

Obviously the procedure leaves you sterile. I did look at sperm freezing but decided this wasn’t needed as if I do decide to have kids down the line at some point there are fairly new options for direct sperm extraction from the testicles although at 52 I’ve probably missed the kids windows if I’m honest.

i would say that there isn’t any right answer. It’s what is right for you and works best given where you are in life etc There are caveats with any of the choices really. For me I went away and learnt as much and I could and talked to various people so that my mixing pot for full of evidence based facts and then decided where I wanted to go from there.

I’m scheduled in next week so will post a new thread detailing the journey.

Good luck with your journey and shout if you have any questions or need a view etc

TG

I can't answer your specific questions, but one thing I can point out is that it's been found that a good regular exercise regime makes a significant improvement to the time men stay on Active Surveillance (AS), before having to switch to Active Treatment.

It is also worth pointing out that AS does come with a risk of spread which goes undetected until too late to use some treatment options. Do make sure you are getting the full surveillance part of it which will at least reduce this risk, but can't remove it.

Personally I believe AS is more suitable for those of us who are approaching their seventh decade, as I chose 4 years ago.

As long as regular PSA checks are carried out along with MRI scans should a significant rise in PSA occur, the benefits gained from AS rather than undergoing the rigours of treatment when in or approaching your seventies must be considered.

If I had been diagnosed with a Gleason 6 in my early 60's I may have considered removal of my prostate, as at that age my general fitness levels would have given me a better chance of a quicker recovery with less side affects to contend with.  

Statistically I am likely to survive 10 years before the need for any treatment and had I had surgery instead the same survival timescale would apply but I would have had to endure recovery from surgery plus all the side affects that go with prostate removal.  No brainer for me and pleased I took the route I did.

Just a few facts to go with the above:

Diagnosed November 2015 following a HoLEP procedure but it had been suspected I had PCa since 2006 but after one too many negative biopsies and a still rising PSA, I called enough on the biopsies and opted for "watchful waiting".

PSA prior to HoLEP 5.6

Two months post HoLEP 0.3

Sept 2019 1.9

My consultant has no worries about this rise which he regards as being the result of normal prostate tissue regrowth, something with which I concur.

He has seen five consultants on three continents, visited The Mayo Clinic in the States and discussed Nano-Knife at that famous klinik in Heidelberg (all privately).

He has annual MRIs and consultations with Professor Whocannotbenamedhere, his favourite consultant, and this year had a novel urine test which is supposed to be in lieu of a biopsy, and is following a largely vegan-type diet recommended by the Mayo Clinic.

He is quite athletic, a runner and swimmer and works out in his own gym. He says he has a great sex life, which is unlikely to be the case if he had had a prostatectomy.

So he is doing great on A/S, but ominously is a member of Exit, aka ‘The Voluntary Euthanasia Society’, and has no intention of enduring a long, lingering painful demise.

And on that bright note, I wish you the best of luck whichever path you choose.

Cheers, John.

Unless contrast dye is used it isn’t a multiparametric (mp) MRI I think. The contrast dye makes a significant difference in terms of differentiating tumour tissue over normal. I was able to see this myself as I took my scans home and visualised them. From a talk given by a Prof E at UCLA the mpMRI is a key step before moving to TPM biopsy if needed. Good luck with the journey but I would definitely raise the question with your consultant urologist. 

This might be useful: https://prostatecanceruk.org/media/2498337/5682-plain-english-consensus-guideline-final.pdf

TG

Edited by member 28 May 2020 at 08:09  | Reason: Not specified

Hi Paul,

I'm 57 and was on AS for 2 1/2 years. Things appeared very stable for quite a while but PSA started rising the early part of this year and MRI picked up a small tumour. Staging upgraded to T2A.

I felt I was going to need some treatment sooner rather than later and opted for a nerve sparing prostectomy in March this year. Personally, I'm happy with my choices and things all getting back to normal. Good luck with however you decide to go forward

Hi Paul

Hope it helped. 

Great news on the MRI front.

Please keep us updated with progress.

cheers

TG

Hi Paulo

thats a good result. Long may it continue!

Simon