Latest from sunny Milton Keynes

Hi All,

You haven't heard from me for a month or three but I'm sure you'll all be thrilled to hear I'm still around - or not, as the case may be. I went to see the Urologist again today and got some good news - latest MRI appears to show no extra-capsular escape so I may be offered curative treatment after the next MDT meeting. However the Urologist ( an Associate Specialist rather than a Consultant ) noted that I was originally down for a lymphadanectomy, i.e. a laparascopic dissection of the pelvic lymph nodes, and that this was cancelled or postponed ( depending who you believe) after my bout of pancreatitis back in November.

I took the chance to say that I was not intending to opt for RP even if it was offered, and therefore I didn't see what there was to gain by them checking for lymph node involvement before offering me an operation which I am not going to consent to anyway. In fact I believe the reason they are pushing this is because it can be done by the local Urologists in "my" hospital, whereas RP and/or RT both have to be referred to other hospitals. However this particular Urologist was of the opinion that, not only would they not offer RP to a patient with positive lymph nodes, but they would not offer radiation either ! He went on to say that if I didn't have the lymph node dissection then the only treatment they would offer was hormones, which I'm already taking anyway and have been since January.

I must say I'm shocked by this - I've done lots of research over the last five years ( since I first discovered I had elevated PSA ) but I've NEVER heard of radiation therapy being contingent on having a lymphadanectomy first. We agreed that, if the MDT recommended this course of action, I would get the chance to discuss it with the Consultant before any definite plans were made. In the meantime, can anyone else here relate to the idea of having your lymph nodes examined before any curative treatment of any sort is offered ?? I am beginning to think that it's time to jump ship from this lot and seek a second opinion, but of course I'm reluctant to give up on my local hospital unless I'm certain that they don't know what they're doing - going elsewhere will involve lots of travel with wheels I don't have. Views, anyone ??

John the CAMRA man,
UK

Thanks Alf,

I'll keep UCH in mind if I do jump ship - as you say, it's very handy indeed for Euston ! I'd need to keep a careful eye the time of day though, believe it or not a return ticket to Euston now costs £42 if you want the option of travelling back home during peak hours (1615 to 1900 in this case.) Or maybe I'll just spend longer in the Bree Louise and try not to give myself a third attack of pancreatitis as a result. I must admit I've been looking for an excuse to visit that pub for some considerable time !

I think they are going to offer RT regardless, but may or may not insist on this lymphadenectomy nonsense first. As I said the guy I spoke to today is not the boss, and for that reason I'm not going to read too much into his words - I think the top man may have a different opinion when I speak to him. If not then I will definitely be moving on.

Thanks again,

John

Time to resurrect an ancient thread (ahem.) I've seen the Oncologist and it appears that because I'm not a suitable case for surgery,I'm not suitable for brachytherapy either. So I'll be having RT - 35 fractions - at Northampton Hospital. No more talk of lymphadanectomy, thankfully. This could have started already, but I've chosen to delay until September as I'm going travelling in the early part of that month and I'd rather not do that immediately after RT - if I get bowel issues I shan't be able to spend several days yomping around cities ! Also, no-one has shown the least urgency with my case for the last six years so I can't believe it's suddenly become urgent now

On the plus side, I had a cystoscopy about a fortnight ago and I'm all clear in my bladder. Onwards and upwards......


John

Post Edited (CAMRAman) : 8/14/2012 11:52:09 AM (GMT-6)

All the best to you John with the treatment.
Sending you all good wishes from not so sunny Brighton (in fact raining cats and dogs!).

moderators/peter have been notified - she/he as hit 38 forums on HW -
- does she think she is going to get any action from men and women on this site - preying on the ill ....

very sad...

Lets not forget this is CAMRAman's thread. Thanks.

Hello again Chaps ( and any Chapesses watching) ,

OK well I did my 37 fractions of RT back in October and November of last year, it was pretty much a breeze apart from increased frequency of urination ( to the point where I was having to dive out of the car en route and disappear behind hedges. ) and some tiredness, which I seem to be over now.

Back in mid-March I had my first PSA test since the treatment, I just found out yesterday that the result was a reading of < 0.1 - so it looks as if I may have joined the Zero Club. I did ask my GP if he was certain that it was my blood he had sent for testing, but he assured me it was !

I hope you are all keeping tolerably well,


John the CAMRA man

John, what fantastic news!!! Very happy for you and long may good news continue for you.
Best wishes to you from a not so sunny Brighton, Sussex although they do assure us Spring is finally on the way this weekend!
Stay well.
Susan
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