My head's still spinning!

Had my neck MRI last Monday afternoon, 'twas a bit of a trip down memory lane for me, it was in a mobile unit ( 1st MRI I had in UK was at King's Mill hospital in the mobile unit- circa 2004) all was fine, other than it was raining when I came out & got wet getting back into the hospital.

Has a call on Thursday from Sue, my Nurse Specialist asking if I had heard anything (thought she would have access to results before me) & to let me know that my transfer to Royal Derby Hospital had been agreed & who my Consultant will be. Now I just need an appointment. So a happy bunny to be nearer home although I can't fault the support I've had at King's Mill, they've been excellent.

Now just need the MRI results & a letter from Royal Derby. Postman watch week.

A quick footnote, I'm hoping to get to the Derby Support Group on Tuesday 8th October if anyone on the forum goes, please let me know.

Cheers. Steve

Edited by member 29 Sep 2019 at 15:35  | Reason: added footnote

Steve,

It looks to me like you'd be a better candidate for RT+HT.

You stand a reasonable chance of retaining sexual function.

Your consultant sounds worried he might not get it all and it could be upgraded, in which case you'll likely require RT+HT anyway, but then you get both sets of side effects.

I would suggest speaking with a radiotherapy oncologist. A popular treatment for your type of case (high risk) is a combination of External Beam RT plus Brachytherapy.

In your bio, you mention DD. What's that?

Hi Steve    It's your choice of course but if my husband was in your position I would rather he opted for the RT/ HT route if possible. My husband opted for the op with non nerve sparing. The PCa turned out to be contained but of course he has total ED now and very slight incontinence (about 97% there) which will be permanent.

Of course at the time we just wanted the best chance of full remission and we didn't really appreciate how much we would miss our normal sex life until some time after the operation.

In your case as the operation alone seems unlikely to put you into long term remission think very carefully about whether you want the side effects from the operation not to mention the pain and recovery time involved only to have to undergo RT/HT anyway with its own set of side effects. Either treatment is not a walk in the park so why put yourself through both. 

As Andy has said I would recommend you discuss with an Oncologist also.

Good luck with whatever route you take.

Ann

Edited by member 11 Oct 2019 at 17:48  | Reason: Not specified

Steve,

Given the DD, you might consider RT with SpaceOAR (stands for Space Organ At Risk), an injectable spacer that pushes the prostate and rectum apart, so the anterior rectal wall doesn't get the full RT dose. Normally, SpaceOAR is not available on the NHS (although they are evaluating it). It is not recommended to high risk patients because of the theoretical risk of pushing micro-mets away from the prostate where they won't get irradiated. However, your DD might sway it in your favour, and it's worth asking if you could have it on the NHS due to the DD. It's around £3000 if done privately. There is a trial at UCLH called ICEMAN, which is using SpaceOAR on high risk patients, the idea being to find out if there's any substance to the theoretical risk of pushing micro-mets away from the prostate and the X-ray beam. Obviously, being a trial, it might not work (in that you might get recurrence due to a surviving micro-met), but that's a risk you would need to weigh up against exposing DD to RT (and I've no idea what the risks of that are). It might be worth contacting UCLH for advice.

S

A lot to consider there and I don't envy your decision making process. If you had attended Nottingham, the MDT oncologist would probably have been recommend  surgery based on all the things that are often described on here as flawed thinking. 

Thanks Chris

Barry,

When SpaceOAR is used with HDR Brachytherapy, the needles (or proper name, catheters) have to be put in the prostate before SpaceOAR is installed, because the ultrasound rectal probe can't see through the spacer. I guess if the SpaceOAR absorbs ultrasound, then it would absorb some/all of the HIFU energy, which would explain that.

Come to think of it, I think HIFU also uses ultrasound guidance, so it would probably also have problem seeing through the spacer for targeting.

Edited by member 11 Oct 2019 at 22:51  | Reason: Not specified