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Prostate removal, is it the best thing

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User
Posted 02 Oct 2018 at 12:31

I have recently been diagnosed with stage 1 prostate cancer, I have decided to have my prostate removed

User
Posted 02 Oct 2018 at 15:38

Depends!

 

If it's a high grade you should treat it - as a T1 all options are available not just RP.

If it's a low grade you could "watch it" 

Read up on all the options just remember forums tend to over represent less than ideal outcomes.

Edited by member 02 Oct 2018 at 23:10  | Reason: Not specified

User
Posted 04 Oct 2018 at 21:26

Hi Colin,

There's so much info on here that will help you decide the best course of action, and the option of being able to discuss your situation with a PCUK nurse is a real bonus, they are brilliant.  In the end, you have to go with your gut instinct.

I had the choice of radiotherapy or radical prostatectomy and opted for removal, which was done in November last year.  For me, it was definitely the best decision, but you really have to be prepared for all the side effects, incontinence and ED. Also, the possibility that you may still need hormone treatment and radiotherapy, ( I start mine at the end of this month!).

Whatever you decide, I hope it all goes well for you.

Best wishes.

Mark. 

User
Posted 05 Oct 2018 at 13:49
HI Colin,

Sorry to hear your diagnosis. I was offered active surveillance or hormone thereapy followed by radiotherapy or a radical prostatectomy and agonised for some time over which to go for. There is no right or wrong answer. I talked it over with close family and eventually decided on the robotic surgery which I had at the wonderful Christie Hospital Manchester 3 and a half weeks ago. My experience has overall been very good so far. My incontinence has not been as bad as I had anticipated and I have recently picked up a Urinary infection and so I am on antibiotics but I believe this is a common thing with this type of surgery and do not feel ill with it, just going to the toilet more often than normal.

My advice is to not to read too many peoples experiences because I found myself that people had different experiences what ever treatment they had and once you make your mind up stick to it and resist the temptation to look on line looking at the options

I found looking at the video posted by the actor Stephen Fry about his experience of Surgery for prostate Cancer helpful. You can easily find it on you Tube

A Macmillan nurse said to me when I was diagnosed that Lots of people will tell you their experiences and treatment choices but do not listen to them as this will be your Journey and your individual choice.

Best Wishes

Paul

User
Posted 05 Oct 2018 at 14:26
Not sure about that advice!

My advice would be soak up all the experiences and advice you can get so you are fully informed. Nothing worse than thinking "I wish I had know that before....."

User
Posted 15 Oct 2018 at 14:49
My Angry

Apologies. Maybe I did not make myself clear and you are right to question what I said and I take your point. Of course you should read as much as possible and check out others experiences. As you rightly say it was the experience of those like Stephen Fry that made me go to the Doctor in the first place. Sharing experiences is of course a positive thing and many experiences have helped me.

What I meant was that for me personally once I had made my mind up about having surgery I found it helped me to stay away from forums and articles on treatment choices as it was mashing my head a bit and just stick with the decision. For me there came a point after much exhaustive research and reading about peoples experiences where I felt enough was enough and to finally make a decision and not be deflected. I understand for some that they may still want to read more and that is fine we all react differently

I think the Macmillan Nurse was saying no one can tell you what to do and it is a personal choice. I possibly paraphrased her incorrectly as I am sure she would encourage everyone to talk and find out information . I found when I was researching I was getting some conflicting advice so you have to make a judgement at some point. I personally found the decision difficult and it was close family who really helped me make the decision but also hearing the stories of others also helped

Sorry once again and I do agree with you that it is important to seek out the experiences of others. As you quite rightly allude to without Stephen Fry speaking out I may never have discovered I had prostate Cancer when I did and I am very thankful to him and will in due course contact him and thank him.

Best Wishes

Paul

User
Posted 15 Oct 2018 at 15:27
Well Paul,

I don’t think you needed to apologise (twice), as however angry as Mr Angry is, he will understand that virtually everyone here is under stress (not me) following their cancer diagnosis.

He is angry at the bureaucracy of the NHS and how its machinations can slow your progress through the system unless you are pro-active and take some charge yourself.

I have thrived on the information here and on other internet fora for almost the last year, and I even subscribe to a daily urology digest update - how sad is that? I like to be informed what these doctors are up to when they start twiddling with me!

You are quite right about the ignorance in this country about PCa, and my friends in America have annual PSA tests and DRE examinations as their medical insurers find that financially expedient. I wonder why our NHS does not?

So best of luck with your treatment and your prospects for the future.

Cheers, John.

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User
Posted 02 Oct 2018 at 15:38

Depends!

 

If it's a high grade you should treat it - as a T1 all options are available not just RP.

If it's a low grade you could "watch it" 

Read up on all the options just remember forums tend to over represent less than ideal outcomes.

Edited by member 02 Oct 2018 at 23:10  | Reason: Not specified

User
Posted 04 Oct 2018 at 21:26

Hi Colin,

There's so much info on here that will help you decide the best course of action, and the option of being able to discuss your situation with a PCUK nurse is a real bonus, they are brilliant.  In the end, you have to go with your gut instinct.

I had the choice of radiotherapy or radical prostatectomy and opted for removal, which was done in November last year.  For me, it was definitely the best decision, but you really have to be prepared for all the side effects, incontinence and ED. Also, the possibility that you may still need hormone treatment and radiotherapy, ( I start mine at the end of this month!).

Whatever you decide, I hope it all goes well for you.

Best wishes.

Mark. 

User
Posted 04 Oct 2018 at 23:24

thanks Mark, all the best to you .

User
Posted 05 Oct 2018 at 01:44
Hi Colin,

If you would like to glean more informed opinion here regarding your condition, it would be most helpful, in addition to your age (55), if you could provide your Gleason score ?+?=?, and your staging, T?N?M?, and say what kind of biopsy you had for your diagnosis.

Best wishes, John.

User
Posted 05 Oct 2018 at 11:32

Hi Colin,

During my PCa diagnostic process I was initially given a clinical diagnosis of T1 ( Stage 1 under the new system ) 
It was then further upgraded to T2b ( Stage 2 under the new system  ) with a Gleason score of 3+3 = 6 .. 

However, after surgery it was further upgraded to pT2c ( so still Stage 2 fortunately  ) but the Gleason score was upgraded from 3+3 =6  to 3+4 =7
Post op histology can differ from a clinical assessment as when the prostate and associated tissue is in the petri dish they have the whole picture before them....
Something to keep in mind perhaps when deciding on what action to take.. 

Best Wishes 
Luther


User
Posted 05 Oct 2018 at 13:49
HI Colin,

Sorry to hear your diagnosis. I was offered active surveillance or hormone thereapy followed by radiotherapy or a radical prostatectomy and agonised for some time over which to go for. There is no right or wrong answer. I talked it over with close family and eventually decided on the robotic surgery which I had at the wonderful Christie Hospital Manchester 3 and a half weeks ago. My experience has overall been very good so far. My incontinence has not been as bad as I had anticipated and I have recently picked up a Urinary infection and so I am on antibiotics but I believe this is a common thing with this type of surgery and do not feel ill with it, just going to the toilet more often than normal.

My advice is to not to read too many peoples experiences because I found myself that people had different experiences what ever treatment they had and once you make your mind up stick to it and resist the temptation to look on line looking at the options

I found looking at the video posted by the actor Stephen Fry about his experience of Surgery for prostate Cancer helpful. You can easily find it on you Tube

A Macmillan nurse said to me when I was diagnosed that Lots of people will tell you their experiences and treatment choices but do not listen to them as this will be your Journey and your individual choice.

Best Wishes

Paul

User
Posted 05 Oct 2018 at 14:26
Not sure about that advice!

My advice would be soak up all the experiences and advice you can get so you are fully informed. Nothing worse than thinking "I wish I had know that before....."

User
Posted 14 Oct 2018 at 23:17

Thanks for the heads up, Hope your doing well Luther 

All the best Colin. 

User
Posted 15 Oct 2018 at 14:49
My Angry

Apologies. Maybe I did not make myself clear and you are right to question what I said and I take your point. Of course you should read as much as possible and check out others experiences. As you rightly say it was the experience of those like Stephen Fry that made me go to the Doctor in the first place. Sharing experiences is of course a positive thing and many experiences have helped me.

What I meant was that for me personally once I had made my mind up about having surgery I found it helped me to stay away from forums and articles on treatment choices as it was mashing my head a bit and just stick with the decision. For me there came a point after much exhaustive research and reading about peoples experiences where I felt enough was enough and to finally make a decision and not be deflected. I understand for some that they may still want to read more and that is fine we all react differently

I think the Macmillan Nurse was saying no one can tell you what to do and it is a personal choice. I possibly paraphrased her incorrectly as I am sure she would encourage everyone to talk and find out information . I found when I was researching I was getting some conflicting advice so you have to make a judgement at some point. I personally found the decision difficult and it was close family who really helped me make the decision but also hearing the stories of others also helped

Sorry once again and I do agree with you that it is important to seek out the experiences of others. As you quite rightly allude to without Stephen Fry speaking out I may never have discovered I had prostate Cancer when I did and I am very thankful to him and will in due course contact him and thank him.

Best Wishes

Paul

User
Posted 15 Oct 2018 at 15:27
Well Paul,

I don’t think you needed to apologise (twice), as however angry as Mr Angry is, he will understand that virtually everyone here is under stress (not me) following their cancer diagnosis.

He is angry at the bureaucracy of the NHS and how its machinations can slow your progress through the system unless you are pro-active and take some charge yourself.

I have thrived on the information here and on other internet fora for almost the last year, and I even subscribe to a daily urology digest update - how sad is that? I like to be informed what these doctors are up to when they start twiddling with me!

You are quite right about the ignorance in this country about PCa, and my friends in America have annual PSA tests and DRE examinations as their medical insurers find that financially expedient. I wonder why our NHS does not?

So best of luck with your treatment and your prospects for the future.

Cheers, John.

User
Posted 15 Oct 2018 at 17:40
HI John

Yes agreed I understand why virtually everyone on here is under some degree of stress and it is the last thing I want to do is add to it in any way. I recognise when I make mistakes or my writing is not clear and will always hold my hand up

I fully get why he is angry at NHS bureacracy and why you thrive on the information here

I got some good news today from my specialist who gave me Lab results after having my Prostate removed 5 weeks ago that I had clear or negative surgical margins which was a big relief. He also said the cancer was more aggressive than was thought and it was on examination 4:3 and not as originally diagnosed 3:4 so I do feel very fortunate

Best of luck to you too and thank you for your comments

All the best

Paul

User
Posted 15 Oct 2018 at 18:31

Originally Posted by: Online Community Member

Thanks for the heads up, Hope your doing well Luther 

All the best Colin. 



I'm doing fine thanks Colin.... Still suffering from a couple of the well known side effects of a RP ( they do vary from person to person ..but it's a lottery you have to be prepared to partake in with any form of radical treatment )  ... I've learnt to manage them .. they are my new 'normal' and I 'ain't bovvered lol! 

52 months on from my da Vinci surgery my PSA is still stable at <0.01 and I'm on no medication other than a caverject injection when I and my lady feel frisky lol! 

I'm in no way trying to influence you as to what decision you come to regarding your treatment path ...we are all different and deal with stuff in different ways... 

Best Wishes 
Luther  

User
Posted 15 Oct 2018 at 22:01

Don’t know if having an RP is the best thing but it was my gut feeling to go down that route.

lt left me with all the classic side effects which appear to be permanent.

I saw salvage RT as a good backstop if necessary which it proved to be.

RP could never have been a backstop for RT if I had gone that way and that formed a big part of my decision.

HT is now my backstop and I worry that I am inching closer to a situation where I run out of backstops.

I am four and a half years into this crappy journey but long may it continue.

Who knows, the SRT may have cured me but I will not know unless and until the HT and any other treatment is stopped.

 

 

 

 

Edited by member 15 Oct 2018 at 22:13  | Reason: Not specified

User
Posted 16 Oct 2018 at 02:22
Well, if you let 10m extra people into the country and do not upgrade every aspect of infrastructure by at least 20%, then the kind of chaos we have to endure now is only to be expected.

Think parking, traffic jams, four-hour waits at A & E, hospital waiting lists, schools overcrowded, housing shortages, etc., etc.

Stephen Fry has a lot to answer for!

User
Posted 16 Oct 2018 at 07:14

Hi Colin sorry to hear you have joined the rest of us with this life changing decease. I find reading other members journeys with this cancer very helpful indeed and all the different advice you digest will help you make the right choice. what ever you decided to do you will get side effects from the treatment but you just have to cope with it as best you can, I decided on the operation as I felt I needed to have the cancer removed from my body and do not regret it one bit even with the side effects I have at the moment.

My advise is to stay positive, and its not all ways easy, but it will help you to cope with whatever you go though in the future.

best of luck Colin.

 

User
Posted 16 Oct 2018 at 09:42

Originally Posted by: Online Community Member
Well, if you let 10m extra people into the country and do not upgrade every aspect of infrastructure by at least 20%, then the kind of chaos we have to endure now is only to be expected.

Think parking, traffic jams, four-hour waits at A & E, hospital waiting lists, schools overcrowded, housing shortages, etc., etc.

Stephen Fry has a lot to answer for!

I really don't see what this highly political comment has to do with this thread.

Also you seem to be "blaming" Stephen Fry for some of the extra demand on PC services. I think it is generally accepted that raising awareness is a good thing It may increase demand on already overstretched resources, but the key point is that it potentially saves lives.

 

ARR

User
Posted 16 Oct 2018 at 12:28

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
Well, if you let 10m extra people into the country and do not upgrade every aspect of infrastructure by at least 20%, then the kind of chaos we have to endure now is only to be expected.

Think parking, traffic jams, four-hour waits at A & E, hospital waiting lists, schools overcrowded, housing shortages, etc., etc.

Stephen Fry has a lot to answer for!

I really don't see what this highly political comment has to do with this thread.

Also you seem to be "blaming" Stephen Fry for some of the extra demand on PC services. I think it is generally accepted that raising awareness is a good thing It may increase demand on already overstretched resources, but the key point is that it potentially saves lives.

 

ARR

The remark about overcrowding in this country is not ‘highly political’, it’s factual.

The remark about Stephen Fry was a joke. Sorry you didn’t get it.

Cheers, John.

User
Posted 16 Oct 2018 at 15:47

Thank you Mr Angry re your comments

"I wish I had found this site BEFORE I went for treatment - the fact I may have had very limited options anyway is neither here nor there as I wasn't told about them or discussed in any sort of detail.  I have learned a lot from reading others situations, decision making and new treatments.

 

Perhaps 3 years on from my diagnosis, things have changed for the better for all of you.  I do know that 3 years ago the hospital had 700 prostate patients on its list.  Today it is over 1,500.  They seem overwhelmed and unable to cope probably due to more men coming forward for early testing and watching telly and seeing Bill Turnbull on the BBC News along with Stephen Fry's video.

 

Glad the misunderstanding is sorted Paul and good luck with your treatment and prognosis. "

 

I agree and I was lucky to find this site before I went for treatment and it has been very helpful.

I dis read the other day that since the publicity by Stephen Fry and John Turnbull men going for a PSA test and being diagnosed with Prostate Cancer has rocketed and I read that the   latest figures show the NHS treated 14,479 patients for urological cancers between April and July this year, up nearly 4,000 cases – or 36 per cent – on the same period last year. 

Certainly for me it was Stephen Fry talking about his experience last February along with coverage in the press that made me go for a PSA test and I am very grateful to him that he spoke up but as you say the resources to deal with this increased demand has not caught up

 

I wish you all the best too Mr Angry with your treatment and prognosis too

 

Best Wishes

 

Paul 

 

 
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