Decision time draws near

Some similar stats to yours (please see my profile). I opted for open surgery to "get it out of me" and rt as a back up should I need it. Now 5 or so weeks post op and feeling pretty good, no further treatment needed as the moment but am waiting for psa test in May. Dry after about 3 or 4 days, am on Cialis for ed that is showing signs of success. If I had my time again I wouldn't do anything differently. I hope this helps and any questions please let me know.

Cheers

AL

David, did they explain why they thought the brachy only had a 60% chance of working for you? That is much lower than would usually be quoted so i am interested in the specialist's rationale.

Thank you all so much for comments to help me through this particular phase of all this, and I am fully aware that many of you have this far worse than me. I hope I can offer help to others if needed.
My forthcoming decision has not been made easier just now by hearing from my brother who had RP 5 weeks ago having to call the ambulance worried that he had just had DVT. It wasn't, but this is a worry of surgery of course.

Sincere thanks.

Hi, David.
Go for HIFU to minimise side effects. You can have radiotherapy later if it proves necessary.
Good luck with whatever you decide.
Henry

Hi David,

Unless I have missed something, I can't see that you have said that you have actually seen a HIFU surgeon, only that your Brachy consultant has suggested that if you go the HIFU route make sure the surgeon is well experienced. It might help if you could get your histology and scans to a HIFU specialist for an opinion on your suitability for this procedure but it could delay things (unless you go private), as a new scan and template biopsy are a possibility. Best results for HIFU are generally when the tumour is small, on one side and well contained. Brachy which is just another form of radiation is able to treat cancers that are a little further away but sometimes due to circumstances and limitations it is supplemented by External Beam RT.

I also wondered about the 40% chance of your cancer returning in 5 years if treated with Brachy. This might be a general average rather than a specific risk for you.

Good luck tomorrow, David.
I am sure the HIFU doctor won't offer it to you if you are not a good candidate, as there is no way they want you to have a bad outcome after their treatment.
At 3 weeks post-op with left nerve spared I am exploring aides, though nothing too strenuous yet! I am using a pump to get some expansion because I believe that is meant to help blood supply and so (or by other means) fend off the shrinkage/fibrosis of the penis that can be associated with having no erections for a while. That is not strictly using it as an aid. My surgeon also prescribes cialis 5 mg daily for the blood supply. Others use 20mg 2 or three times a week to try for more of and erection.
I have popped a ring on when using the pump a couple of times (on the base of my penis) just to see what it is like. It held the expansion, but as expected there is no sign of an erection.
A bit further into my recovery I will start using the Viberect we invested in (see their website) to see if that can produce something more like an erection, as opposed to vacuum-generated expansion. Again - partly therapeutically to stave off shrinkage, but also hopefully as an aide to sex.
So far the effect of surgery on sex is the hardest thing for my partner and I. We are going to have to take our time to get our heads around the change to our sex life (as well as hoping it returns, though that is minimum 2 months and up to 2 years, as I understand it). One deterrent to having sex is that touching my penis is one cause of leaks still.
I am finding that I want to be confident with the use of aides, etc. before helping my partner get used to us using them.
I am still glad I chose surgery over radiotherapy, though, because with the radiotherapy side-effects can accrue over some time because of the effect over time on organs caused by their blood supply being fried by the radiotherapy. With the surgery the side effects should improve over time. Of course I might not be lucky enough to get away with treatment ending with the surgery ...
All the best,
Henry

Hi Lyn

I spoke to the Brachy consultant's assistant again just now to clarify the percentage chance of success. He did say that in MY case recurrence within the magic 5 years is between 20-40% likely. That's a success chance of 60-80% of course. The lower end is not impressive, but I guess HIFU could sort that out, IF it comes back, and IF it stays within.  This figure comes from my stats of 3+4 and PSA 13 even though it's on one side only, and contained. This is why it's possibly as low as 60% success chance...which doesn't help me!

Hi All,

Back from my HIFU consultation at St Margaret's, part of Harlow trust. 90 minutes late for everyone but nevermind! Long way there too.
So, he was straight into assuming this is what I want, as I had been referred out of county. He said that with what is known so far, I am suitable. But he said a plate Biopsy is needed and to book it in for a week Monday. We said we would have to think about it after we had finished discussions with him today, but in fact I agreed later on. I knew this might be needed but I guess was hoping my MRI and normal biopsy might have been enough, especially as the Plate one needs a General, and a Catheter for a day or two...and it's only about 6 weeks since my other Biopsy!

Anyway, the point is that it will give a much better picture and, as he said, even if it means I don't then do HIFU due to too much cancer being found, it will show that Brachy is needed instead(or surgery of course). Currently cancer in one side only. So I guess I could still go for Brachy or Surgery after this Biopsy....with HIFU in reserve if Brachy fails?

Driving down there, with my wife, I was in a bit of turmoil...what to choose etc. Naturally, after today, surgery seems less appealing again, even though it may be the chicken in me rather than doing the SLIGHTLY better thing long-term. One just does not know. Yesterday I was 'on' for surgery!

So today, right now, I'm more minded to do the Brachy, with HIFU later if it returns (that 60-80% chance!!)...or the magic pill that they will have developed by then!

All thoughts on the Plate biopsy in terms of either how it is, or how good it is to have it done, most welcome.

Cheers,

David

[Age 56, Gleason 3+4, an 8mm tumour found in one side, possible other bits on same side. No symptoms at all.]

Thanks for the update.
Take your time choosing what you want. You will arrive at a point where your preference stops changing!
Best of luck with Friday's consultation and Monday week's biopsy.

Henry

David

Your situation is very similar to what mine was (although I was 59 when diagnosed). I went for the Happy Trial (http://www.prostatebrachytherapy.org.uk/abstracts/2015_ProstateBrachytherapyMeeting_A4_Abstracts.pdf) . Is only suitable for those with cancer confined to one side of the prostate.

I have absolutely no regrets after having treatment in May 2015. Contact the prostate cancer centre at Guildford (Royal Surrey) if you're interested. I travelled from Devon to Guildford for the treatment but rate my care as excellent.

dl

Not sure about other hospitals but they did this during John's op 6 years ago - that was how they knew to take away some of the bottom of his bladder. Mr P told us that it is down to the experience of the surgeon and whether or not he is confident of what his eyes and fingers (with open surgery) are telling him - if unsure, instant pathology can be used. The downside is that you are knocked out for longer and generally speaking, anaesthetists want their patients under GA for as short a time as possible.

my OH had a template biopsy in Feb (46 cores). The catheter was removed before he came round from op. He was allowed home once he could pee and had to have someone with him for 24 hours (becasue of the general). He had ciprofloxacin and tamsulosin after op. Lots of bruising of scrotum and, unusually, developed a prostate infection that is proving hard to shift. His recovery apart from that was quite quick. Sitting was a bit uncomfortable. The template biopsy provides much more info than the TRUS because the entire gland can be sampled. No more blood in urine/semen than with TRUS
Hope all goes well with the biopsy and with surgery later if that's what you opt for
B

Hello everyone.

Well. Today I have made my decision, and it has not been an easy one. I have just returned from the final planned Consultation. This time it was at the Lister, Stevanage, also out of county for me. I only got called on Wednesday (I had been waiting) after we got back from Epping for the HIFU consultation. I was also booked in for pre-biopsy med next week, and Template Biopsy the week after, needed for HIFU.

I had decided that if this new Biopsy was going to be no help for RP, then I would not have it, and depending on what Mr A [name removed by Moderator] said today, I would make my decision. He was the first of the 5 Consultants to actually have my MRI on screen 'live' to move around. My own County couldn't manage that. He showed the tumour on my one side was fairly large and possibly a bit close to the capsule edge. This guy does the Neurosave pathology during the surgery - or rather his pathologist does, whilst he carries on taking out my lympth nodes and sows the bladder back on. So both sides will be analysed, and he will then decide whether both nerves can be saved...or probably just the one. He did say though that even with one nerve, erections have a 50% chance, and that's based on all ages, not a fit spring-chicken 56 year old like me!!!

So yes - as you can guess I have rejected HIFU and Brachy. Today he said that HIFU really was not suitable at my age for what I've got, plus the PSA is 13 etc etc. He came across very well. He is rather popular so I have to wait 8 weeks...currently booked for June 21st. He says the wait won't matter, though he has said I should get a bone scan. It 'will be clear' he said, but due to the PSA, it should be done.

So there we are. RP it is. Flippin' 'eck....what a decision.

I have to thank you all for correspondence over the last few weeks. I just hope I have made the right choice. Actually, this was what I thought I would have to choose right at the start. I just had to explore all options.

Cheers everyone for now.

Edited by moderator 15 Apr 2016 at 19:10  | Reason: Not specified

Good for you!
Your situation is very similar to mine (4+3, big, peripheral lump making HIFU not right. I am 50 and in good health, generally).
I am day 22 post-op. The leaking is improving, but still there, particularly if I move. No erections, but surgeon said my nerves were spared so hopefully they will return sooner rather than later.
Have you found out about penile rehab? I believe you just will have ED because the nerves are 'stunned' even if they are spared, and take a minimum of some weeks to recover. They will want you to be getting erections about 3 times a week, one way or another, to prevent the fibrosis that seems to result from the limited blood supply associated with being flaccid all the time. So if viagra-like tablets don't give you erections (and they need the nerve to be working) it is usually injections for a while. I have an appointment next week with the nurse who looks after erections in our service! I think she will be getting me to inject ... you can use the time after the operation to get your head around that if you haven't already.

I feel as if I am making progress and I plan to go back to work in 10 days. I sit most of the time at work, which for me involves next to no leaking.

Good luck!

Henry

David - good news that you are clear in your mind now but naming medics is against the rules so perhaps best to edit your post :-(

Henry, don't be disappointed if they make you go through 6 or 9 months of alternatives before they give in and prescribe injections ... particularly as there is a national shortage of caverject at the moment so even with a px you might not be able to get it :-(