Different opinions from 2 Hospitals=Dilemma

Hi all.

I'm glad to hear there are many different "weapons" to fight this cancer. In fact, the uro said so when we last saw him last wensday. The point is to choose the right one. I hope you will have as much as possible done. It's is frustrating when at the time you fight some illness you have to fight red tape too.

Carry on. I'm sure tou will win. You are winning.

The best for you,

Lola.

Interesting. I would expect the top focal guy to take all cases that will give his specialism an opportunity to shine so my take on this is that having already failed at RT and HIFU he does not believe that he can get you a cure either. And that is a significant thing isn't it Manwith .... you travelled far to get what you thought was the optimum RT provision but the outcome was not as you would have hoped, you are a great proponent of HIFU although it has possibly (you don't know for sure, fortunately) also failed. It seems the Prof does not believe that FLT would be any better.

Ray said what I was thinking; "I wonder at what point you might give in gracefully?" but that is not your style.

My dad's PSA is climbing slowly and last time we saw Mr P he put all the stats into his whizzy nomogram and predicted it will take 20 years to kill dad which would make him 99. Dad feels that is a reasonable target to aim for :-)

You may recall that Stan persuaded Mr P to remove the lymph nodes even though he was absolutely refusing point blank to have RP. It may have bought him a little time, who knows? Is there no surgeon that will take it out for you?

Hi Dave,

Thank you for your thoughts. As regards the suspect node, Heidelberg to whom I sent a copy of my scans done by UCLH, in 2015 compared these with the scans they did covering the period 2008-11. They reported that the size and shape had not changed over this period and they felt the uptake of Choline was not sufficient for them to be convinced that this node was cancerous. This view was shared by the Marsden and QE Birmingham who also viewed the scans. However, UCLH believed the node was cancerous based on the uptake of Chlorine which they considered substantial. So a difference of interpretation.

The cores from 50 needles of my Prostate template biopsy in 2015 only showed 1 core with PCa and this was treated with HIFU. Yet from a post HIFU scan the UCLH report says the opinion is equivocal on whether there is some PCa within the Prostate.

Of course, I don't want to have further treatment if this is likely to be highly risky in introducing severe side effects but on the other hand I do want to consider what options other than just HT I have if PSA continues the upward trend. (It is clear that some consultants treat more aggressively than others). So if my PSA rises to 1.2, the point at which UCLH would start me on HT, I will consider more aggressive treatment elsewhere. My decision would also depend on what was on offer, how old and fit I was and what were the pros and cons.

Ray,

Professor E assured me that the decision for UCLH not to do anything other than initiate HT should PSA reach 1.2 was based solely on the battering my Prostate had already been subjected to and I believe this was his genuine opinion and not due to cost constraints.

Lyn,

As far as I am concerned it's not just a matter of longevity, it's the quality of life which would be impacted by long term HT that I would hope to avoid.

My mother used to say, "You never know when you're beaten". Sometimes this attitude has worked well but occasionally got me into trouble!!

Edited by member 26 Feb 2017 at 22:05  | Reason: Not specified

Choline, not chlorine! The choline PET scans don't show cancer, just heightened activity levels, in terms of cell multiplication and division. They suggest areas for further attention and are no substitute for a clinician's experience and best judgement. UCLH were being cautious and may be right but the weight of opinion is with the others. Give it time, which you clearly have and the right course of action will become obvious. Per Dad's Army "don't panic!"

Good Luck

AC