Hello Dodger,

Sorry for the late reply. I wrote a Long detailed account the day after you posted, pressed the button and voila, it didn’t get posted and the text disappeared. This is my first opportunity to do it again.

Further to my last post, I recovered ok but had to attend an incontinance clinic. The nurse turned out to be a good friend of my daughter who I already knew! Before the op they said my cancer was confined to the Prostate and on removal that would be the end of it. Following a scan, they told me it had spread to my lymph nodes which didn’t impress me much and so I had to have radiotherapy and hormone treatment for 3 years which ended last December. Before the HT they gave me a treatment on my breasts to attempt to stop them growing. It didn’t really work and I still have a 4 inch diameter brown circle on each. I attended the ED clinic where I tried pills and viridal duo injections, the injections were horrific. Fast forward to now, my PSA is still undetectable which is the main thing, since coming off the HT I’m feeling more like a man and feeling randy again and the hot flushes have stopped. The ED Is getting slowly better I’m even getting “nocturnals” so have great hopes that my wife and I will soon be able to get together properly I am using the smallest pad daily for drips and only really need them when working. The worst thing now, is I need to self catheterise every other day to keep the urethra from closing because of scar tissue building up where my urethra was refixed. All in all, I haven’t had such a bad time, as my wife says “ you’re still here “ which of course is the main thing. 

Anyway, that’s my story I’d like to hear how you’re getting on.

Hi Bracken07

i am 60 years old and I was diagnosed 4 weeks ago 

i have  decided to have the surgery and I see you and your husband have opted for the hormone and radiation treatment.

What is important now is that you guys give this treatment a 100% commitment and everything will be ok.

Thanks so much and good luck to you hope all goes well.

Hi Tony, 

 I’m back with my results at last. My Gleason score was 4+3 and my cancer has spread but not very far being found in one pelvic lymph node only. No evidence of it having travelled further “north.” Thus designated as locally advanced T3a n1m0 which I think barring bad luck is curable, the Consultant putting in the proviso that there are no guarantees. I’m already on hormone tablets and the regime that goes with them and radiotherapy down the line. For those who panic about PSA levels before treatment as I did before heeding your advice on the subject my last reading was 120 and I fancy my chances now that I know what I’m up against. Knowledge is everything and despite having today been told I have cancer I feel better than I have for some time time because I am confident that with all the resources that are backing me and the nature of the opposition revealed I’ll be fine. So bring it on!  Any advice you have always welcome and appreciated.

Max

Max

Hi Telemando. Home use only. Fat fingers & lack of practice !

The cynic in me is thinking about relative costs - RALP or Radiotherapy in the 1st instance, to the NHS. I would assume that most people will initially be referred to the Consultant Urologist from the GP Surgery. Next MRI. I was told current cost (if private round about £900. 10 yr old machine). Then Biopsy with General An'- day release. In addition I attended a Pre-Op course with 6 others a week before OP

I am unsure but I think that initial radio' is a 30 day course with all that entails in the Hospital system.

My RALP was day op in surgery, O/Night in UrologyWard, release approx 5.00pm next day.

What do you think the costs would be for these 1st comparative stages where they are looking for an initial "cure" ?

You want to get out and play with some friends. Playing music is a great way to relax and forget your health worries.  Last week (sunday to sunday) played at 4 gigs (and 1 practice) in 8 days. I'm still recovering now. 

I don't think any comparative costings have been issued.  When I was diagnosed back in 2010 I read that the estimated cost of a RALP was between £5000 to £10000; compare that to the $30000 to $150000 it would cost in the US!  I've no idea how much a course of radiotherapy would cost.

Interestingly, I've just found this NICE document on treatment of prostate cancer. It's clear that in the early stages, there's no significant difference between surgery and radiotherapy: Prostate cancer: diagnosis and management

Hi Max . Yes your results sound good . I run my own confidential facebook page  THE TROUBLE WITH CANCER as well as contribute to this useful Forum . Your Gleason score tells me that the first number is the most prolific cancer and aggressive being 4 , the second number is 3 which is a lot lower than my reading which was 4+5 which puts me at higher risk for spreading . Typicallly Gleason scores are up to one third too high . Also do not put too much store in the score as highly aggressive cancers are often easier to kill off with radiotherapy . You PSA is high but what is more important is the "doubling rate" of your readings . This again can be very confusing as is not as clear as one would think . In any event from what I know/have reacently learnt you important marker namely M is MO meaning there is no evidence of metastates or spearding outwith the prostate /area . Therefore on your radiotherapy consent form the Doctor will put " to effect cure/prolong Life " which is a massive positive . I am surprised that you have not had a nuclear bone test ? I have been on howmone treatment now for 7 months and the hot flushes have virtually gone . Use a fan to help . Nipple soreness is common and does go also . probably you will be having 37 fractions of radiotherapy and you would save yourself a great deal of problems about the water balance you need to achieve so keep in touch . Many people feel shattered during /after raditherapy BUT I walked briskly for an hour each day and the tiredness has gone ! Keep in touch I you will learn about what happens when the cancer that has been missed by treatment and what is done then . The overally survival rate for regional localised cancer which we both have is 100% at 5 years . The remember the cancer has to starte growing all over again which can take many years . I needed to know what I was facing and because of my contuning research and existing knowledge I hardly ever think about it now . Good Luck Tonybear

Tony,

I am currently lying in a hospital bed in London having had a prostatectomy yesterday. Originally diagnosed with T3B the surgeon said the growth on the seminal vesicle was much bigger and linked to the bowel but managed to remove it. I know face 4 months of hormone therapy before radiotherapy and then potentially 1-2 years of hormone following this. I know everyone is different but how was the hormone treatment for you?

Zinzan

I am 7 weeks ahead of you. I suggest you take things one step at a time for the moment. You have just had major surgery and you are about to have a tough week. You look like you have just been impaled by 6 metal spikes. The General Anas' & the Oromorph are gong to take time to leave your body.

I found having small goals and things to look forward to a great help. Perhaps look forward to having the catheter removed in 7-10 days together with your pain relief schedule the 1st step. Then I found looking forward ( and a countdown) to the 28 days of Fragmin injecting myself. I hated that and found that a lot of swearing helped.

Wish you all the best

Hi Guys 

i am due my surgery on the 31st and reading these posts are helping me no end to prepare for the weeks ahead.

i appreciate you guys sharing your experiences and wish you a speedy recovery 

i will I’ll keep the forum posted on my progress 

Ashworth