Sorry to hear your news Andy but there is light at the end of the tunnel hang in there and look at the options. I had the same grade cancer as you when it was upgraded to Gleason 7 (3+4) post surgery (biopsy showed 3+3).
in about 40% of cases Gleason scores are generally upgraded at least one point.
I was also offered active surveillance but felt given my knowledge of cancer and the cell pathology I felt a more proactive approach was needed.
I reviewed focal therapies is offered at UCLH in London but felt given in my case that at least four quadrants of the prostate were affected with five tumour sites detectable via 3T mpMRI I extrapolated that it’s likely there will be more sites that aren’t detectable at this stage.
I also reviewed radiation treatment from the options of proton beam, which is very very new, and more conventional electron beam which we know as standard radiotherapy although have evolves to more targeted therapies via either guided via image data or computer in the case of say CyberKnife.
During my research I became aware of a new approach with robotic assisted radical prostatectomy using the Retzius technique which goes in under the bladder that’s avoiding a lot of the disturbances involved with traditional radical prostatectomy and significantly improving the outcome and outlook in terms of incontinence. Additionally I also requested that neuro safe was added during the surgical procedure. This is a very new technique/approach and essentially has a pathologist with a microscope on standby during the operation to take frozen sections as the surgeon removes them to check that the margins are safe and free of cancer cells. The net effect of this is to allow the surgeon to make a much more informed approach with nerve sparing graded margins.
Nerve sparing during the operation is very key to your outcome in terms of erectile dysfunction and potential problems in that area going forwards.
The other key factor in consideration was the surgeon to be used and I was conscious that it makes sense to use a surgeon who has high volume Data and very good outcome statistics. Part of my investigation part involved talking to people on this fantastic site Plus also making contact with others more locally to get a view on their surgical experiences and more importantly to talk to people of been through surgery using these new techniques.
I was very fortunate to be able to talk to a number of people that have had the Retzius sparing robotic assisted Radical prostatectomy with the neurosafe and also found one of the top surgeons who pioneers this technique as well as teaches it to surgeons around Europe.
Given all this information and reassurance from patients they’ve already been through this specific procedure I contacted the professor in question and had a consultation at the beginning of November last year. At the first meeting I knew I’d made the right decision given the evident depth of knowledge demonstrated during our conversation and felt it was right to move forward to surgery with a reasonable probability of a curative outcome (assuming no stray cells). So surgery was scheduled for the end of November at London Bridge using a Da Vinci Xi system.
Surgery/post surgery was very pain free and I was out of hospital after two nights stay. I had to wear a catheter bag for 15 days following surgery which is a little uncomfortable but manageable for the short term.
Like many of the other patients that have had the new technique of surgery I’m experiencing excellent outcome in terms of incontinence. From the point of immediate catheter removal I had control albeit some leaks and drips over the following weeks which have improved dramatically. Essentially what I was experiencing were leak and stress-related leaks I coughing sneezing and passing wind which would induce some kind of liquid output but this was captured by the pad. It’s important to consider during this period especially given that I had a catheter inserted In my you urethra that this is still inflamed and it needs to settle and indeed it has over the last 2 to 3 weeks. Additionally with stitches have been made to join the bladder and the sphincter or valve where the prostate has been removed the stitches actually hold the sphincter slightly open under tension until the start to dissolve at about six weeks. So right now I’m using one pad every 24 hours mostly for reassurance but I can envision this not being needed in the next few weeks but I’m perfectly accepting of the odd stress leak on an occasional basis given that the ultimate goal of the treatment to was to remove the cancer.
in terms of the stats detailed by the professor given his data over the last few years with the Retzius approach it shows that in 80% of cases continents is achieved within a short space of time with the biggest changes being in the first six weeks of stitches dissolve. A further 19% of patients may take up to a yearTo experience continence based on the fact that the scar you formed around the sphincter and rebuilding of the bladder takes about 12 months to soften and become more pliable. In 1% of cases Some patients are left incontinent and need some intervention surgical or otherwise.
Im also happy to report that my potency is gradually returning. I noticed a tingling in the area the weekend even after surgery, which was quite surprising, and I have had semi erections in the weeks following. I’m talking 5mg tadalafil daily as this was recommended by my surgeon to aid blood flow into the area and help the nerves to repair with a view of giving improve direction function over time. I would say now I have 70 to 80% functionality and are able to have penetrative sex.
So in summary I’m very happy that I took the option of Retzius sparing robotic assisted radical prostatectomy with neuro safe and more specifically found an amazing surgeon that ticked all the boxes.
If you would like to chat about options and thoughts going forwards I’ll be very happy to help. Obviously choices are very individual and you have to select what’s right for you going forwards.
I would be mindful in making the decision within say a month given the grade of cancer and generally because it will be upgraded post surgery but also in the knowledge that the majority of cancers tend to be around the anterior anyway and you want to capture it while localised with a good margin.
Immediately after my surgery the professor discussed with me that the margins were very close indeed and initial thoughts were it had crossed the prostatic shell. However when histology reported back a week later all margins were clear and all the other areas also clear which was fantastic news and also a big relief.
Best of luck with your journey and although it’s not an easy time you’ll find excellent support here and also recommend talking to any local prostate Cancer support groups as the more information you can get, at the very least allows for a more informed decision which is right for you.
(apologies for any typos as I used Apple speech dictation 🤖)
Edited by member 04 Jan 2020 at 10:30
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