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