Questions about new diagnosis

Hi

Had meeting with oncologist a couple of days ago.  Again, don't know if it's just an NHS or resource thing, but she said they still radiate the whole prostate rather than focal, with the potential side effects of that.  Don't know if focal is still fairly new so long term results not known ?  Or just most of the NHS is still a bit behind on techniques and technology.

Without outright recommending it, she said that they'd normally go for surgery for someone of my age and general health.    The cynic in me wonders if she just doesn't want additional work for the department.  :-)    Yes, I know it's ridiculous.

Still got a few weeks to wait for urology appointment so will see what that brings. 

Still hate the thought of having to choose.  If it was a heart condition etc where they said you could keel over at any point if you don't get this surgery then fine, choice made.  But having to choose between two different options and then later wondering if you made the right choice is terrible.

Anyway - another vent over.  Thanks for reading if you did.

Cheers

Hi John,

I’m now 57, diagnosed June 23 with 3+3 Gleason, Med team advised AS, I was all for having it out. Ended up on AS by default due to timescales here in the West Midlands. At 12 months, my PSA was going down, still is, and 2nd MRI was more favourable than the first one. 2nd Biopsies were delayed 6 months on advice from Med team. Had 2nd biopsies 23 Oct, one core with 3+4 and one core with 4+3, Med team recommending removal, will take 2-3 months.

As others have said, if you have removal then other options are still available if cancer were to come back inc RT. If you have RT, removal may not be possible further down the line. 

Again as others have said, everyone is different. For me, my decision will not be based on side-effects, as much as yes would love to avoid them if poss. My top priority is to hopefully still be here for another 15, 20, 25 yrs and, for me, it seems removal gives that the best hope. 

There is no easy answer and sadly not enough long term study data (10-years or more surveys) to make the decision any easier. Keep checking online for all the info you can gather to help. Some good stuff on YouTube about different approaches to removal and trying to avoid side effects as much as possible. 

wishing you all the best

Jon

Hi John,

Yes, at the moment I am in the NHS system in Worcestershire. My latest biopsy results meeting was with a locum consultant but I believe that all results and recommendations come from a meeting of the medical team that is headed by one of the main NHS urology consultant's covering the Worcestershire area. The main reason given for their removal recommendation was my age. He said that if I were 75 years old with say a 10-15 years life expectancy ahead of me, their recommendation might be different. He mentioned that radiation can lead to issues on a 10-year or so timescale with possible bowel cancer and if radiation were used now, that would not be an option for me if that were to arise in 10 years time when I would be 67 years old. Whether this is official NHS policy I cannot say but it does seem to accord with lots of views that you can find online.

Going back to my previous post (everyone is different...), another factor for my situation could be that, what is regarded as a slow growing cancer has gone from 3+3 Gleason to a mix of 3+4 and 4+3 Gleason in just 18 months from at 56 to 57. My PSA was 4.4 at the highest last year and was just 0.85 two months ago. Maybe the 2nd biopsy results are way ahead of the usual curve that they expect to see. I am due a consultation meeting with the lead consultant in February (!) when I would hope to find out more info if nothing changes before then.

Jon           

All surgeries have risks. I haven't heard of anyone die of prostatectomy; that is the good news. Recovery can be quite straight forward or difficult. Chances of incontinence nowadays are low, ED problem is under estimated; consultants tend to be over optimistic. I had surgery 13 years ago, suffer from very minor incontinence and permanent ED. We consider ourselves very lucky, enjoying our life in all its aspects.

If you go for surgery or any other options be confident and positive. Remember a lot of healing takes place in your brain. You are relatively young; I had my surgery at 72. Because you are young you have a good chance of recovering your sexual function, but in my opinion vast majority of men undergoing prostatectomies don't achieve 100% sexual function post surgery. 

Good luck - we all need that.

In my experience the NHS, especially its anaesthetists,  go to great lengths not to operate on anyone, if there's a risk they might not wake up.  

If they think you're a risky patient in that respect, they won't operate on you in the first place.