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Prostate choices

User
Posted 08 Nov 2018 at 20:23

hi...I'm 51 and was diagnosed with prostate cancer in June...I had the option to have it removed or radiotherapy and hormone treatment ..my score is 7 ..4+3s and 3+4s...I work seasonal work and had to keep on working after being told both treatments are generally successful...I still have the option to have the op as still on hormone treatment...my GP said because of my age radiotherapy may be the better choice as there can be a host of urinary and sexual problems afterwards....I still haven't decided but would love some advice on this matter

User
Posted 09 Nov 2018 at 07:32

It isn't always the GP being clueless - some will be very clued up on the NICE guidelines. Here is the list of things that medical staff in England must not do:-

https://www.nice.org.uk/donotdo/do-not-offer-adjuvant-hormonal-therapy-in-addition-to-radical-prostatectomy-even-to-men-with-marginpositive-disease-other-than-in-the-context-of-a-clinical-trial

 

 

Edited by member 09 Nov 2018 at 07:33  | Reason: Activate hyperlink

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Nov 2018 at 03:08

We often find here that many GPs are not as clued up about PCa as they should be, like the one who told a member here some years ago that a PSA of 20 was “normal”. And the ones that say to men over 50 that request a PSA test: “Have you got any symptoms? No? Then you don’t need a PSA test.” And my own former GP, when I was lying on his couch in my underpants for something else and was asked to perform a digital rectal prostate examination said “We don’t do that these days”.

I find I am advising my own GP about PCa, and indeed I am taking him a copy of the PCa UK ‘Toolkit’ folder at our next consultation. I hope he will find time to scan through it, and then recommend it to his next unfortunate patients who rock up with the disease.

You will probably find that surgeons recommend surgery, and oncologists recommend their ray-gun. In my own case, both surgeon and oncologist concurred that surgery was the better option, only to find after my prostatectomy that there was limited spread outside the prostate, so I might still potentially end up at the pointy end of a ray-gun anyway.

Best of luck whichever path you choose.

Cheers, John.

Edited by member 09 Nov 2018 at 03:14  | Reason: Not specified

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User
Posted 08 Nov 2018 at 23:29
You are likely to have urinary and sexual problems whichever treatment you go for. Interesting that your GP took that position, it is the opposite of most people’s thinking. Generally, the tendency is for younger men to opt for surgery and older men opt for radiotherapy.

If you haven’t done so already, download the toolkit from this website rather than muddle yourself with Google which isn’t always going to produce reliable or relevant information.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Nov 2018 at 23:46
I had forgotten that you are already on hormones so it may be that you don’t actually have as much choice as you think. NICE guidelines are that men should not be offered hormone treatment if they are having a prostatectomy. I5 will be really interesting to hear about your appointment with the surgeon and the decision you finally come to.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Nov 2018 at 00:46
I see you are located in Andorra but I would have thought that the clinicians there who determined your Gleason score and presumably gave a diagnosis as in the UK would be in a better position to comment on treatment options in your case than GP's. GP's knowledge about PCa is not going to be as extensive and may well be unduly biased. Having said that, it is usually left to the affected man to decide which option to go for. To help you make an informed decision you need to learn all the pros and cons of the treatments open to you and aspects that are most and least important to you. As Lyn says, a good basis is to study the 'Toolkit' and if you have not yet done so seek an appointment with both the surgeon and oncologist to obtain their opinions in your individual circumstances.
Barry
User
Posted 09 Nov 2018 at 01:14
Gosh, completely missed that - explains the weird start with anti-flare hormones. Lucky you!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Nov 2018 at 03:08

We often find here that many GPs are not as clued up about PCa as they should be, like the one who told a member here some years ago that a PSA of 20 was “normal”. And the ones that say to men over 50 that request a PSA test: “Have you got any symptoms? No? Then you don’t need a PSA test.” And my own former GP, when I was lying on his couch in my underpants for something else and was asked to perform a digital rectal prostate examination said “We don’t do that these days”.

I find I am advising my own GP about PCa, and indeed I am taking him a copy of the PCa UK ‘Toolkit’ folder at our next consultation. I hope he will find time to scan through it, and then recommend it to his next unfortunate patients who rock up with the disease.

You will probably find that surgeons recommend surgery, and oncologists recommend their ray-gun. In my own case, both surgeon and oncologist concurred that surgery was the better option, only to find after my prostatectomy that there was limited spread outside the prostate, so I might still potentially end up at the pointy end of a ray-gun anyway.

Best of luck whichever path you choose.

Cheers, John.

Edited by member 09 Nov 2018 at 03:14  | Reason: Not specified

User
Posted 09 Nov 2018 at 07:32

It isn't always the GP being clueless - some will be very clued up on the NICE guidelines. Here is the list of things that medical staff in England must not do:-

https://www.nice.org.uk/donotdo/do-not-offer-adjuvant-hormonal-therapy-in-addition-to-radical-prostatectomy-even-to-men-with-marginpositive-disease-other-than-in-the-context-of-a-clinical-trial

 

 

Edited by member 09 Nov 2018 at 07:33  | Reason: Activate hyperlink

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Nov 2018 at 08:37

Originally Posted by: Online Community Member

It isn't always the GP being clueless - some will be very clued up on the NICE guidelines. Here is the list of things that medical staff in England must not do:-

https://www.nice.org.uk/donotdo/do-not-offer-adjuvant-hormonal-therapy-in-addition-to-radical-prostatectomy-even-to-men-with-marginpositive-disease-other-than-in-the-context-of-a-clinical-trial

 

 

Thanks Lyn, that was a bit of an eye-opener.

User
Posted 09 Nov 2018 at 09:05

Originally Posted by: Online Community Member

It isn't always the GP being clueless - some will be very clued up on the NICE guidelines. Here is the list of things that medical staff in England must not do:-

https://www.nice.org.uk/donotdo/do-not-offer-adjuvant-hormonal-therapy-in-addition-to-radical-prostatectomy-even-to-men-with-marginpositive-disease-other-than-in-the-context-of-a-clinical-trial

Well, what a revelation Matron. Looks to me like going out with a shopping list of things NOT to buy, even though you have £120bn in your wallet. I will read some more of the NASTY guidelines when I have calmed down.

Cheers, John.

User
Posted 09 Nov 2018 at 15:24

i was thinking Bollinge was just being chippy but then I read the "guidelines".

My god - what a cheapass way to save money by condemning men to possible death.

Do not automatically offer a prostate biopsy on the basis of serum PSA level alone. Other risk factors including digital rectal examination findings should be taken into consideration.

If the clinical suspicion of prostate cancer is high, do not offer prostate biopsy for histological confirmation, unless this is required as part of a clinical trial.

These two particlarly suck as surely PSA and biopsy are the defacto????

I wonder if Breast cancer has as many cop outs. ** It has them but only about 2/3 the number **

NASTY not NICE is spot on.

How do these people sleep at night?

Edited by member 09 Nov 2018 at 15:31  | Reason: Not specified

User
Posted 09 Nov 2018 at 20:52
This is NICE 'Guidance' and is not always strictly adhered to. Mostly, this guidance is for hospital Consultants and not GP's, the latter's involvement being instrumental in referring men for treatment, generally monitoring patients and helping directly or indirectly ameliorate affects that may arise. I don't think it is the role of the GP to overrule what Consultants prescribe or offer without very good specific reason in a case, regardless of what NICE say. I know of at least two instances where Consultants have not followed NICE guidelines which tend to lag behind realities of medical advances.
Barry
User
Posted 10 Nov 2018 at 20:00

When I was searching for options there was a private clinic in London offering hormones before a prostatectomy.  At the time it sounded quite a good idea as I was being quoted up to 8 weeks for the op in the NHS, it being Christmas.   I was told that possibly they had a long waiting list and mine would be alright  (in effect).  They definitely didn't regard it an option.

User
Posted 11 Nov 2018 at 15:10

I think I will go down the radiotherapy route..I'm due my next zoladex implant on Thursday and to be honest I'm used to some of the side effects now,fatigue being the main symptom..no sex drive whatsoever and don't fancy the catheter issue....have water flow tests in 2weeks time then an appt with oncology a few days after that...then things finally may start to get done 're the radiotherapy,but I appreciate all of the replies re my post 

Edited by member 11 Nov 2018 at 20:18  | Reason: Missing sentence

User
Posted 14 Nov 2018 at 22:39
Happy to say that my various clinicians ignored pretty much all of the “do nots” applicable in my case. They seem designed to foster the development of PCa...... Perhaps make sense in the context of 70+ age group, but many of us are much younger and would like to get to 70!

Nick

User
Posted 15 Nov 2018 at 18:06

Just like to day, I had PSA of 38 on diagnosis, Template Biopsy, then went onto Gleason 4:5

Onco told me too much cancer for prostatectomy, straight onto Triptorelin HT for 3 months

i then had 20 fractions of the stronger IMRT, 9 weeks later my post RT PSA is 0.5

im staying on HT to complete 18 months the no more hot flashes and hopefully end to ED

 

 
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