Active Surveillance or Surgery?

I considered my options, AS amongst them, and chose surgery for the following reasons.

- PCa is a metastatic disease. The longer you give it, the more chance it has to spread. Ok, 3+3 is not likely to spread quickly or even at all, but at this point the classification is made on the basis of a few biopsy cores and the “upgrade” rate from post-RP pathology is something like 40%. My final classification was 3+4.

- Best get it done sooner while it is still well inside the prostate maximising the chance of full nerve sparing.

- When done right by a high volume expert surgeon, you stand an excellent chance of coming through with full continence and minimal loss of erectile function, though it may take a little time to get back to normal.

- I had had years of prostate symptoms (not directly related to PCa) so getting rid of the (not so) little blighter had its attractions.

- Aforementioned large prostate made brachiotherapy impossible.

Thirteen months on I feel I made the correct decision, in spite of some unusual but fairly severe post complication. I’m currently “in full remission”, fully continent and erectile function within sight of the pre-op condition and still improving. I would also never have been comfortable with the idea that there was a known tumour inside me - to quote a surgeon acquaintance, “the only good carcinoma is the one in the bucket.......”

Best wishes for your decision making process

Nick

Hi Chalkmate

I am much older than you 72 now, but I opted for RP earlier this year to get rid of the cancer that was contained in the prostate. So glad that I did as I am now 14 weeks post op and dry, sexually getting better. My decision was made with my wife and made quickly, surgeon to op in a week. I do understand that we are all different and we react differently to the same situation. I feel so much better that I made a quick and for me the correct decision. Hopefully this may help you.

Regards

Peter

hi

As others have posted.  Everything considered it's your attitude to risk.  

incidentally what are your PSA values. ?

see my profile.  I was quite shocked to be told a lesion had started to push through capsule.

I wouldn't have wanted repeat biopsies either I had in effect put myself on AS by insisting on PSA tests and using my meagre knowledge to watch trends in PSA..

You asked why delay surgery ?There are other options. 

The big If and unknown is do you have any grade 4 cells ..if not then very very low risk and stick with AS.   This disease as I'm sure you know is very unpredictable, you like me and others could have grade 3 cells present for decades.  You can't extend timeline back.

I can't add much more than said by other posters.  Maybe a 2nd opinion ?    Dont rush whatever. 

Yes it's growing, rate unknown . Mine was multifocal when I asked, so again I assumed incorrectly that PCa started in effect from a single source and spread.   

How does your partner and/ or close family feel about this?  Have you discussed ? 

My wife suffers more than me 're. post op. PSA anxiety as the years tick by.   I guess like so many on here, you appreciate life and friendships a great deal more and take each day at a time.

I remember saying to my wife, if it was Gleason 6 on my biopsy the decision process would have been harder  .  As it was Gleason 7 our decision for treatment was made easier. It was then to decide on what and when.

Gordon

Hi Chalkmate,

Don't know if you've chosen a path yet, and everyone's  is different, but just thought I'd share my experience. I'm 58 and was diagnosed (via MRI-guided perineal biopsy) with Gleason 3+3 just over a year ago. It was localised in one area with no breakout, so I was low risk and had all options open. Chose AS, but after six months decided I wanted to take control rather than having the decision taken for me, or having my options limited down the line. 

Started to investigate all possibilities and RP was the obvious choice for me as it seemed that it was the route that would give me the best chance of getting rid of the PCa for good. I didn't want another 15 years of PSA tests and biopsies, or to be a cancer patient at all. So, after finding a surgeon I felt happy with (you can check out their records on baus.org) I went for it and the prostate (and cancer!) went on July 2.

Ten weeks post-op I have no regrets. My head is in a much better place and I'm able to plan my future without worrying about PSA levels and what's happening down there.

After effects: The one we dread - ED - which I hope will improve given that RP on early-stage localised PCa gives you a much better chance of nerve sparing. Err, that's it: I suffered no incontinence, was pain free within 2 weeks, back at work in 4 and am back running with no issues.   

I wouldn't presume to give you advice but the things that helped me most once I'd decided on RP were: finding a surgeon I was totally confident in, speaking to other guys who'd had the op (including via PCUK's One to One service) - and just knowing I was in control of this thing rather than the other way around.

Appreciate I'm lucky, with minimal side effects, but hope a positive report post-RP will help you with your next move, whatever it might be. 

Best Regards

If you have it done early enough while self-contained and eligible for nerve sparing, and by an expert surgeon, there should be a good chance of eventual full recovery except for dry orgasms, but with a risk of loss of erections and urinary incontinence. The further it goes before radical treatment, your options reduce and side effects increase, and risk of recurrence increases.

It's a gamble of QoL now, QoL longer term, and longevity.

Also think about sperm banking at your age.

Edited by member 11 Jul 2019 at 14:51  | Reason: Not specified

If you had an MRI and biopsy did the consultant mention what the MRI found.  Biopsies are a bit hit and miss.  Mine missed a lot only 1 pin found anything and only 5% at that, although it was 13mm according to the MRI.  So finding a few extra pins might mean change or it might not.

The good thing is a 3+3 is likely to be developing slowly and it gives you time to decide.  There is a lot written about over treatment.  I was warned about it.  Yet being complacent and finding out it's too late brings a sinking feeling to us all.

If it was me I think I'd keep calm and set wheels in motion thinking that it's very likely to bring a successful outcome. It's all probability, like I hope mine has gone but my Gleason means I'll be one of the few.

It is possible that with a low Gleason they'd do their upmost to save nerves.  Especially if you ensure you get an experienced surgeon.  Assuming you choose surgery, as Brachytherapy might be a good option and if they don't offer it at your hospital you've likely got time to sort it elsewhere.

I was no good at having a tumour inside me I wanted it out, it's all depends on your own attitude.  So all the best, Peter

Hello Chalkmate

If you read my profile you will see i opted for robotic surgery.

The cancer was localised in my prostrate  and i was offered all the alternative treatments but after long talks with my wife we thought lets get it over with.

I would not presume to tell you to follow my lead but i do now have < 0.01 psa a negative reading and will have blood test every 3 months. 

Love it when i touch nerves!!

The risk of speaking to a random from a site like ours (rather than someone that has been approved and given guidance on how to be that befriender) is that you may get very one sided or unreliable info. Better to have discussions openly if you can so that there is some balance.

Hi John

Thanks for the heads up. Talking with a few of the guys on here that seems to be pretty much the time line so fingers crossed :-)

I'll get some thick pads for the trip home. I'll probably get a taxi as based not far outside Wokingham although I think train is probably just as easy.

What did you do ref the infected stitches? Did that mean a trip to London Bridge again or were you able to get local GP support etc? Thats the only thing that concerns me is local support especially out of hours. And how the NHS view treating private op patients.

Top tip ref WD40 :D

Cheers

TG