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Posted 17 Nov 2014 at 10:48

Just been diagnosed with prostate cancer, PSA 20.6  Gleeson 4+3 =7, 7/12 biopsies effected plus some high grade PINS. so its not the mildest form or there again not the most aggressive form. Devastating news especially when one thinks about treatment and the possible collateral damage, Have discussed Radical propstectomy, or Radiotherapy with hormone treatment, with a surgeon, have to have a bone scan next week, and another discussion, The MRI showed one possible seminal vesical involvement, at the moment its T2 but could be T3b. At the moment ive been thinking that RT+HT is the best treatment, but what is HT like; It would be for 5 years apparently, How do people cope with that?, How would I view my wife when Im on it?. There are clearly side effects with RT, but Im attracted to the high-tec nature of it, There again with surgery, its all presumably over more quickly, and if one can recover ones bladder and rectal control, life could be bearable. I gather the nerves are dissected along with everything else, so presumably sex is difficult. Sorry about spelling, Im still shaking with nervous exhaustion as I write this. Yours Brian

Posted 17 Nov 2014 at 11:59

Hi, difficult decision eh

my cancer 3+4 had gone to psa34 so been on radiotherapy but couldn't take it past 15 rounds out of 37

because on my fibromyalgia was being affected bad so had to stop. I do take the hormone therapy

get realy sore boobs and seem to grow a bit been about 3 months some hot flushes to otherwise ok

down below sort of. So don't know now what will happen I don't want prostate out my mate up the road

had it done no more erection sliced a nerve and hes had awful problems still after 6 months

and I live by myself hes married to a nurse. None of these are nice 37 times for RT every day

however if it hadn't been for fibro would have carried on even tho there are some nasty side affects

you can get. But saying that on the positive side some people go thro both types with not to much hassle

particulary the RT. If it was me it would be the RT, just do some more research

Oh my nuclear scan was ok what you will be having


Good Luck


Posted 17 Nov 2014 at 12:24

I think you need to wait until you have all of the test results before making up your mind. When everything is understood as well as it can be your consultant will be able to consult tables and statistics and provide you with the percentage likelihood of recurrence at 5 years and 10 years. This will assist you to choose your method of treatment.


In my case it was clear that RP was the way forward and this was performed via a Davinci robot at Addenbrookes. It has been 6 months since the operation and I am virtually continent again...the odd big sneeze can still produce a tiny leak...ED is still an issue but I have every reason to believe that it will improve. The effects of the operation itself have virtually gone now, there is still some weakness but I'm getting stronger all the time. Anther thing that steered me towards surgery was the option to have RT/HT if there is a recurrence in the future; a second string to the bow.


Good luck with everything. I sincerely hope it all goes well for you





Posted 17 Nov 2014 at 15:00

Hi Brian,

Sorry you had to join us but welcome anyway.

Of course you are shaken, we all were to some extent at diagnosis. The best tip is - One step at a time !

Until you ( and your medics ) have the full results then the best treatment is as yet unknown for you.


Life is quite bearable with all the treatments ! However there are side effects to all the treatments unfortunately. But one of which is continued life to be enjoyed. Being pro-active & asking questions as you go along is good. Swamping yourself by trying to make decisions too quickly is not so good.


You will view your wife with love & understanding much as you do now. And she will do the same I'm sure. Treatments you mention will affect sex life if that is your question though. With surgery & seminal vesicle involvement you would need to ask if erectile nerves can be spared or not. Radiotherapy ( R/T ) will damage nerves and they may or may not repair over time. HT will mean you will loose some libido unfortunately.

On the upside, P.Ca. is highly treatable now with new treatments coming along faster.

You ask what is HT like. Well, it can vary from person to person. Generally expect loss of libido & some fatigue. The fatigue hit me badly whilst others fare better. The combination of R/T + HT sometimes means additional fatigue especially towards the end of the R/T. 


Yes, surgery has advantages such as knowing the primary tumour(s) are gone. Also having an exact histology report to see where & what was affected. Follow-up R/T is available for any local spread confirmed by histology or rising psa figures. This may be required in some cases. Downsides are some incontinence short-term & a small but real risk of long term. Rectal problems are usually associated with R/T , not surgery; I think you may have muddled up slightly there. General health obviously has bearing upon a surgical decision, whilst R/T treatment is spread over several weeks.

You really need all the info. put together and as Stephen suggests using that to help predict outcomes. That may well help you decide your best way forward.



Posted 19 Nov 2014 at 19:54



welcome to this site which i found to be a massive help to me. time is on your side and wait until you receive the full results before making a decison.

diagnosed sept last year.psa 4.3 and 7 of 12 samples cancerous.one 20% and rest 5%.did alot of research about op and radio therapy. went op at christies.why? i wanted it out and if op didnt work then i could fall back on radio therapy. must admit didnt fancy side effects of rt but i knew the op would cause its own problems.

op success and all blood tests clear so far.

incontinence for first 4 weeks was a big problem using 2/3 large pads a day.frustrating and demeaning. but then suddenly it got better by about 75% and went onto one small pad. maybe starting the pelvic exercises so early helped. i used them for about 3 months and then realised i didnt need them. what a marvellous feeling to be back to normal in that department...yes there is the occasional very small dribble when i need to go or sometimes for no apparent reason. 

i had half of my nerves taken out and ED is a big problem. but maybe in time that will change.


i am now fully fit and back to full time working in a warehouse. but i avoid very heavy physical work or jobs which luckily i dont come across in my job.


take your time on your decison and then be 100% sure with the decison.


as well as reading this site i joined a local support group and it helps to talk to people who have been through it all. your macmillan nurse will have details of your local group.


i know things will be very difficult at the moment and hard to take in. but believe me there is plenty of hope so try to be positive

Posted 14 Dec 2014 at 17:20

The journey continues. The bone scan was clear so it seemed logical to opt for DaVinci robotic surgery, rather than RT, partly as a result of some of the positive comments on here,  and I have a date for the op in Jan. Also is the possibility if there is any recurrence, I could have RT, whereas RT followed by surgery apparently doesn't work very well. Of course there are all the lingering doubts about the surgery and side effects, but I know I just have to go for it with confidence. Ar least I can spend Christmas with my grandchildren, without worrying about catheters. Plus hospitals don't work so well over Christmas. There are a lot of carol concerts at this time which I like to sing in, and so I had warned a number of people about what was going on. Still seems very unreal, and why me? crops into my mind a lot. No doubt that SW London is a fortunate place to be with St George's and the Royal Marsden not far away. I have a doctor daughter in Praetoria. and a number of friends who are doctors, so I am not short on advice. But I have to be careful not to ask them if I have made the right decision about surgery, as its unfair to put them on the spot. yesterday, I saw the surgeon who will be doing the op, a South African, quite tall, Very straight talking, and I admit rather depressed me, warning that nerves might not be saved, as there is a possibility of T3, although not clear on the MRI, means that he may have to cut the nerves away on the effected side. (We clearly need better MRI machines), having said that he still wants me to have three erections per week after the op, using vacuum devices or injections (Ow), to get some oxygenated blood into the penis. Another depressing factor, my age (69) makes it less likely that I will be continent quickly. This is the major downer, as the sphincter that normally keeps the urethra closed by involuntary automatic control will be cut away, and Ill be left with the lower sphincter, which I have to keep closed my voluntary thought processes. I have no idea how this would work, as I dont normally walk around thinking about my bladder.well the cancelled surgery happened on Feb19th, and the surgeons seemed pleased with what they had done. Interesting they were all hanging around in the corridor on my way in. and I asked them if we could start up a song. Anaesthetist, was very expert, as I had previous problems with intubation, so he used a boogie, and gave me a lumbar block which helped immensely after the surgery; went into high dependancy unit at St George's. where the staff were brilliant, kept a close eye on me. and helped in every way. They had a good banter with each other,and patients and a clinical sense of humour, which I appreciated. Didnt sleep any, but watched the brilliant team work going on on that ward. Most impressed-love the NHS!. Came out the following day, a bit sore, and handing catheters a bit tedious. Two goes at catheter removal, the first ended up in urine retention, an unbelievably painful experience, back at ST GEORGE'S in the evening to be re-catheterised, Then after the weekend anther go, done by a brilliant Macmillan nurse called Dierdre. I took in 3 lits of water, and had only peed 60 ml by the time I left in the evening, anyway it gradually increased until 16 days post-op I am peeing ( and drinking) a lot. I think I was de-hydrated  on that Monday before due to taking antibiotics. Now I am not leaking during the day, but I am wanting to get to the loo very often, esp during the night, so no sleep for four nights. I have a consultation with the surgeon coming up on Wednesday, when the pathology will be discussed. Very anxious about that, as obviously, I would hoe its all done and dusted. Dierdre phoned me during the week to check on progress, She has a great sense of humour - I suppose she needs it handing grumpy old men like myself

Edited by member 07 Mar 2015 at 14:35  | Reason: Not specified

Posted 14 Dec 2014 at 17:53

Hi sghk200,

I can't answer which treatment path you should take, because that is a very personal decision. I, personally and perhaps idiosyncratically, chose surgery because I was concerned about the possible side-effects of RT (perhaps a bit irrationally) and because I kind of just wanted the thing out of me.  Others, particularly those who are wary or nervous about going 'under the knife', would likely choose RT or HT/RT.  And that's to mention just two possible considerations.

I can, however, answer the question about 'why me?'.

There isn't a why.  It's just something that happens.  It is, in many ways, as probable (or improbable) as your birth.

It's just one of those 'sh%t happens' things. 

Like by far the majority of men, at this stage, you are very concerned, trying to make some sense of it all, perhaps more than a bit angry about it, (but probably not all that sure who, or what, to direct the anger at), worried about what impact it will have on your personal life, your work life, your home life, etc., etc.

All of which is perfectly normal.

Kind Regards,



Life is a journey. You can't move forward on a journey AND stay in the same place.
Posted 15 Dec 2014 at 21:50

Hi sghk200,

If you look at my posts on RT you will find I sailed through the treatment with no side effects at all.

I am also on HT and for the first six months I had some hot flushes and since then no side effects of note.

I would not base my treatment path on the basis of one treatment failing, or if the operation fails you have RT to fall back on. You are talking about a major operation here and YOU are planning your treatment path around it failing. You could be successfully treated with RT and HT without the need for a major operation and all it's immediate side effects. You should base your treatment path on the BEST treatment for you in consultation with your Oncologist.

Good luck and best wishes,


Posted 20 Dec 2014 at 14:56

Thank you for your reply. Having made a choice about robotic surgery, I feel mentally its best to go with it, and try to remain upbeat. But I wouldnt denigrate the alternative, RT plus HT, as clearly many men benefit from it, and get cured. My surgeon has a very good website on www.keyholeurology.org.uk, and seems very experienced, having trained initially in Leipzig, which was at the beginning of the use of the Davinci robot, so I feel I have been fortunate. His description of the Kegel exercises are a little different, and I find tensing the front muscle when leaning forward impossible at the moment, and there are other descriptions on the internet which are easier, but i need to persist with his description I think. I have transferred my more introspective thoughts to a blog on a different site, which is more suitable, andI hope eventually will be helpful to random men, who may not be looking at a site entitled prostate.

Edited by member 04 May 2015 at 09:09  | Reason: Not specified

Posted 23 Jan 2015 at 17:47

Running into problems with NHS overloaded service. Waited 9 hours for surgery last week, but no high-dependancy beds vacant so the operation couldnt start. Its in a major accident centre at St George's Hospital, in South London, so I guess the beds can get filled up at any time. Only 15 hd beds total in the hospital, and helicopters landing with trauma patients all the time. Maybe not the best place for prostatectomy, after all. Waiting now until Feb19th, 140 days since diagnosis so worried about spread, well over the Government target waiting time for cancer of 84 days. Ill have to get psyched up again.Had the operation on Feb19th. Surgeons seemed pleased with what they had done, They removed seminal vesicles andwhat they called sticky mass on the right side, but beleived to have spared nerves on the left side. The TWOC failed once at 7 days post-op, but succeeded at 10 days. Pathology report was disappointing, regrading the cancer as T3b, (good thing they removed what they did). Leaking urine now and then, and glad I got a supply of ABRI-Man formula 2 pads, from recommendation on this site,  which absorb a lot. Walking around quite a bit. The 7 holes in my tummy made for laporoscopy have healed up after the clips came out on day 7, and only slightly bothersome. Depending on PSA measure, may have to have RT and HT after all, which is a blow. Just one focal point in the pathology with a positive margin, That may indicate wider spread. Cant get the PSA done until June; In the mean time done a bit of reading and found that folic acid, which Ive been on prescripton 5mgpd for the last 15 years to prevent blood clotting is a risk factor for PCa

Edited by member 04 May 2015 at 09:08  | Reason: Not specified

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