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Well,I,ve been diagnosed today..

User
Posted 17 Feb 2015 at 09:31

Lyn

For the record at NO time have I ever considered your husband or had him in mind in any of my threads, I know nothing about him! I looked back through my posts as I thought perhaps I had written something badly but couldn't find anything that seemed to be offensive. I'm also not the aggressive type, quite the opposite. What I will say now though is I wish your husband well and many times I have made the point on this forum that we are all different, our cancers are different, our life styles are different, our hospitals and consultants are even different etc etc and therefore what we are recommended can be different even if it 'appears' that we are the same on paper (e.g. Gleason, PSA etc).

If I can add re. Brachy is that the consultant I now have believes that almost anyone with localised prostate cancer of any age is suitable for Brachy. (26/02/2014 - just removed name of consultant as realised it's against the rules!) My consultant pioneered the techniques of brachytherapy in the UK and I think he pioneered 4D Brachy. He has trained over 200 folk in the technique of Brachy and is on the Department of Health's Prostate Cancer Advisory Group and is Chairman of the Prostate Brachytherapy Advisory Group so he should know what he is talking about.

Please don't read I am trying to say 'my dad is bigger than yours' as that's not my intention - but I believe it's good that folk on this site are aware. Initially I was not offered anything but Robotic Surgery for my PCa as my first consultant also felt I was too young for radiotherapy and gave all the usual reasons. In my case what caused me to explore an alternative to surgery was my circumstances and the fact that due to a operation when I was 17 I have a large scar in the area the robotic probes would enter. I was told that because of this they may have to switch from robotic to open surgery 'whilst I was under the knife' adding a further complication to the procedure which I didn't fancy. Once I read about Brachy I realised there was an acceptable alternative that has virtually the same success rate in removing the cancer.

Personally I am glad I contacted Guildford Hosp and am now having Brachy but I wouldn't criticize any choice anyone makes as, lets face it, the bottom line is to try and get rid of the beast!

dl

Edited by member 26 Feb 2015 at 10:58  | Reason: Not specified

User
Posted 17 Feb 2015 at 17:25

I have searched online and I can't find anything saying brachy is not a good option for a younger man. Or proof of survival better after prostate removal. I have asked a friend today, her husband was 51 when diagnosed, he is at the same hospital as us and was never steered in the direction of prostate removal, he was pushed in the direction of brachy/EBRT He did want HIFU (I think that is correct) he paid privately for a 100 needle biopsy but was told he was not suitable.

So, like us went for brachy. No hormones offered before or after. So seems the norm for our health trust. This man is lucky enough to be retired, so it was nothing to do with work preventing hormones being prescribed as Lyn suggested on another post when I said my OH had been told he didn't need them. (yes I know I said he didn't really want them either, but of course had they recommended them he would have had to get on with it) I cannot find anything on line saying why hormones are needed after brachy.

Our friend, 5 years on from brachy his psa remains under 1 (he had no side effects either)

Edited by member 17 Feb 2015 at 17:31  | Reason: Not specified

User
Posted 17 Feb 2015 at 21:19

Anyway,

Sonic,

How are things with you? And have you made, or are you coming to a decision regarding treatment yet?

dave


User
Posted 17 Feb 2015 at 21:33
Originally Posted by: Online Community Member

Anyway,

Sonic,

How are things with you? And have you made, or are you coming to a decision regarding treatment yet?

dave


Thanks Dave poor Sonic must be wondering what the hell happened to his thread (oops sorry conversation in new speak)

Hi Sonic hope you are doing Ok?

xx

Mo

User
Posted 26 Feb 2015 at 22:43
WOW.......

I leave for 5 minutes and look what happens....Please feel free to continue the rants..lol.

I haven't had a chance to post recently,been consumed with work,so I was pleasantly surprised to see,in my absence,the rather lively debate

that had sprung up following my own rather small efforts.

I go under the knife on the 2nd of April,2015.

I have initially taken 3 weeks off work,but with a proviso to increase this as I need.secretly hoping for about 3 months,lol.

I am,as stated fairly naive to the whole prostate debate and can only offer my very small inkling as to the best route for anyone to take.

I have put my trust and basically my prolonged life in the hands of my consultant,whom I,ve come to like a lot and consider what he tells me to be true.

He has said that were it him,he would take surgery,despite the possible/probable post op probs.At my age and considering localised cancer i agreed cos he,s a nice guy.

Only kidding....my options are the same as anyone's and each makes the best choice they can given the facts,personal circumstances etc..Mine is surgery,not that I,m looking forward to a catheter,and no fun in the sack,but she,s going to have to live with it,haha,

But that's half it as well,she,as in my better half,has her say as well,and after much ado about nothing came to the conclusion,that anything that gives me a fighting chance,is a fighting chance.

Prostate removal to me seems a no brainier,considering all factors,but as I said this is a completely personal choice and one each of us makes for themselves.

Looking forward to it to be honest,i want to get on with it now,no patience at all!,and am ready to begin phase 2.

Glad your all still here,and debating fiercely,wishing you all love and long life.

User
Posted 26 Feb 2015 at 22:52

Hi Sonic,

I am glad that you have come to a decision , keep us updated on your op and recovery yes sometimes it does get a bit pistols at dawn on herehttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif but hey ho it stops life from getting boring.

Good luck not that I think you will need it . Roll on the 2nd.

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 26 Feb 2015 at 23:35
Sonic. hey welcome back to your own thread!!

Surgery it is then, so now the decision is made you just have to sweat it out until April. Once surgery is done it can be quite a long old process getting back to normal fnctionality. There will be bumps in the road so I expect to see you here asking anything you feel anyone might be able to help with. I don't think there is anything that has not been asked and answered in some way or another.

Good luck and keep popping in

xx

Mo

User
Posted 27 Feb 2015 at 13:21

Sonic

 

"Mine is surgery, not that I,m looking forward to a catheter, and no fun in the sack, but she,s going to have to live with it,haha"

No fun in the sack ? I have had far more intense and enjoyable orgasms since my prostate removal than before, and we have found ways that mean we both enjoy our love making. I jokingly suggest to my friends and colleagues that they have their prostates removed to have a better sex life. I was supposedly non nerve sparring but 10 months on things are happening. Make sure you get your pelvic floor exercises done pre op (do not do them with the catheter in). I did lots of PFE and was almost dry 4 days post catheter removal.   Catheter not too much of an issue, I got my wife to attach my night bag at night and remove it in the morning (buy her some surgical gloves in case of accidents). Like you have surgeon who I get on with, perhaps seen him too many times (see my profile).  

 

All the best for April

 

Thanks Chris

 

 

User
Posted 27 Feb 2015 at 13:38

Good luck,Sonic.  You will see I've a few threads with my experiences post-op, and 10.5 months on, I'm in a good place.

Your biggest anxiety will be awaiting confirmation that the cancer was contained, followed by how much of your nerves were saved.

 

The biggest advice I could give you is at your first review, get arrangements for dealing with incontinence in place.  I spent a lot on buying my own pads early on and it was about 3.5 months before I got my pads supplied foc.  It may well be worth trying to get this sorted in March.

Also, ask about any ED issues.  Try and get a pump asap, and put on a low cialis dosage for nerve repair.  I found taking cialis at night caused problems in my legs, so I took them in the morning.  That was much better.

 

Plenty of others will give their own advice based on experiences.  Hope it all helps.

 

Paul

 

Stay Calm And Carry On.
User
Posted 27 Feb 2015 at 20:19
Thanks again guys,always really helps coming on here and hearing your own experiences:)

I have however confused myself,since yesterday's post,I was all set for surgery and despite my trepidations concerning post op,felt it was my best course of action.

Stayed up late last night reading and came across a guy called Ray,a fellow biker,60,who has just been given the all clear after a course of brachytherapy.

It's swayed my thinking,it's less invasive,and was completely successful .like me he had localised and had 88 seeds implanted.

He chose this option because it simply avoided surgery,and the after affects.

My confusion has returned just when I thought I'd made up my mind,I go and read that and now I,m back where I started.

If you have brachytherapy,and it fails do you still have other options?,or have you lost them by going down that road?

I feel cornered,by my life situation,I was all set to take time off and could just about cover the time off with holiday time and savings but if a course of brachytherapy gives me the option to take less time off and have a faster recovery,then from that side of things I,m swayed towards trying this first?

I hate the fact I can't just take all the time in the world to heal myself but like most i,m stuck juggling finances and my health,in a mad attempt to come out the otherside unscathed in both camps.

Help me out guys/girls..

User
Posted 27 Feb 2015 at 20:59

Hi Sonic,  Brachytherapy is certainly far less invasive but it also has setbacks.  You would be radioactive with low dose brachy and young children could be effected.   High dose is different.  I believe you would be unable to have surgery/RT afterwards but not certain about that,you could check with nurse on site.   My OH was told surgery/RT/Brachy had equal outcomes in his case- Gleason 3+4,PSA 11.  Before he could have low dose  brachy his PSA went up to 22 so he had to have high dose.  Sorry if this confuses you!!  The outcome was good - no more treatment for moment.

Best wishes whatever you decide,El.

 

User
Posted 27 Feb 2015 at 21:34

It might help to make a list of the things that are important to you and then measure each treatment option against the list. The side effect conversation can be misleading - surgery has a risk of incontinence and ED immediately after the op but for most men, these improve with time. Radiotherapy and brachytherapy can also cause incontinence and ED but they come along progressively and sometimes years after the treatment. Most men opting for radiotherapy also have hormone treatment for anything from 6 months to 3 years - hormone treatment can have significant side effects, some of which are permanent and some of which get better once you stop the treatment. On HT, you wouldn't necessarily be impotent but would probably have no libido. Some but not all men choosing brachy also have hormone treatment.

In terms of time off work, you would have a sick note so if employed it shouldn't affect your holiday entitlement. Robotic or keyhole surgery means you could be back at work within 4-6 weeks as long as you can manage your bladder. Open surgery means you will probably be off work for about 10-12 weeks. Some car insurance companies will not insure you until about then anyway. Radiotherapy is commonly given every day for about 7 weeks but the appointments are usually short and you would probably still be able to work every day and fit your work around the appointments. Brachy may only require you to have a few days off work. Hormone therapy may make you too fatigued to work effectively but some men breeze through it.

Maybe ask to see an oncologist to discuss RT and brachy before you make your final decision?

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

User
Posted 27 Feb 2015 at 21:49

Two other things occur to me.

Much of the decision making comes down to your personality and how well you can manage uncertainty. Opting for surgery means that usually you know very quickly that all was contained and seems to have been completely removed, and although you have to learn to manage the PSA anxiety every 3 or 6 months, generally you know enough to be able to put it behind you and move on. Brachy and RT don't work like that - there is no time line where a doctor can say to you "yep, that definitely worked" so it may be 5 years before you know with any real confidence that your treatment was successful. Some men are able to manage that successfully but if you think you would find it tough then surgery might be a better choice for you.

The other thing is that choosing a treatment based on whether it gives options for other treatment later is flawed thinking. Each of the radical treatments have more or less identical outcomes (% likelihood of salvage treatment being needed and % chance of still being clear at 5 and 10 years post treatment) but statistically, if the primary treatment fails and salvage is needed, then the likelihood of a good outcome drops dramatically whichever treatment combination you look at. So choose the treatment that you believe has the best chance of working first time.

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

User
Posted 27 Feb 2015 at 22:16

Originally Posted by: Online Community Member

Two other things occur to me.

Much of the decision making comes down to your personality and how well you can manage uncertainty. Opting for surgery means that usually you know very quickly that all was contained and seems to have been completely removed, and although you have to learn to manage the PSA anxiety every 3 or 6 months, generally you know enough to be able to put it behind you and move on. Brachy and RT don't work like that - there is no time line where a doctor can say to you "yep, that definitely worked" so it may be 5 years before you know with any real confidence that your treatment was successful. Some men are able to manage that successfully but if you think you would find it tough then surgery might be a better choice for you.

The other thing is that choosing a treatment based on whether it gives options for other treatment later is flawed thinking. Each of the radical treatments have more or less identical outcomes (% likelihood of salvage treatment being needed and % chance of still being clear at 5 and 10 years post treatment) but statistically, if the primary treatment fails and salvage is needed, then the likelihood of a good outcome drops dramatically whichever treatment combination you look at. So choose the treatment that you believe has the best chance of working first time.

Is this, the bit in bold, still the case?  I read here of some people who's surgeons say that if they have one treatment that the making of the prostate mushy after radiation or whatever will preclude them from surgery afterwards, although others here say that their surgeon might be prepared to give it a go.  There is no certainty, is there?

My surgeons told me that if I did not choose surgery as option 1 it was off the table for any future treatment consideration, no if's no but's.

We have disagreed on this matter before, but if the surgeon tells me this, I have to consider it valid. 

Unless the patient asks the very specific question about treatment options, orders of treatment and if any particular order would exclude any other treatment from the list later, how can anyone know?  Or if indeed they can be referred elsewhere for treatment that may not be available at their local NHS trust.  There seems to be a considerable variation nationally.  

And in any case, as yet there is no one treatment proven to be better than another, is there?  IF there was, then all the surgeons or radiologists or speed planters would be out of a job, if there field of expertise was found to be at the bottom of the list.

I agree with personality type being a factor in the consideration.  

I wanted it out, there and then.  Surgery was my choice very early on having looked and considered all the options open to me, and even then I looked at and found a second surgical option, the robot,and asked for and was referred to a neighbouring NHS trust for the robot.  Interestingly, my local surgeon who could only offer open surgery, did say that if he was me., or if he could have offered the robot, he would have recommended me for that.  None of this watching and waiting, no lets leave it in there and treat it and hope for the best.  Fingers crossed.  

 

Sonic - you only have on opportunity to ask and enquire and investigate and research.  Once you are on a surgeons table or being zapped or having seed implanted then you are over the line and options may be closed to you.  If I were you I would ask all the questions you can think of, and then some more, that is what I did, before you make your choice.  

And, when you decide, go for it wholeheartedly, 100% and don't look back.  

atb

dave

User
Posted 27 Feb 2015 at 22:52
Sonic I truly feel for you. there is nothing worse than thinking you know just where you are going or heading than to have doubt thrown at you.

The good thing here is that everyone will give you honest information that will help to guide you. At the end of the day only you can make that final decision either by yourslf or with the help of family and friends. Take in all the info you can but do not wait too long to make your decision.

As Countryboy Dave so rightly says once you have made it, beieve in it wholeheartedly and do not ever look back.

Best wishes

xx

Mo

User
Posted 27 Feb 2015 at 23:51

Hi Dave, not sure what you are asking?

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

User
Posted 28 Feb 2015 at 01:04

I was totally confident in my choice. I had a reaction after my template biopsy, I went into retention and had to go to A and E for a catheter and a night in hospital, so was told that I could not be considered for Brachytherapy.

I don't think I would have opted for that anyway. I wanted the cancer removed asap, and surgery was the solution.

No regrets, but you must do what you feel is right both physically and mentally.

Whatever you decide, be positive and wholehearted.

Paul

Stay Calm And Carry On.
User
Posted 28 Feb 2015 at 10:17

 

Lyn “Much of the decision making comes down to your personality and how well you can manage uncertainty.” I agree and a far more fluent way of my stance for many a year of given the choice you need to be more of a risk taker to go for RT. I hasten to add other folks may well take more risks on other issues.

Dave “Is this, the bit in bold, still the case” - The other thing is that choosing a treatment based on whether it gives options for other treatment later is flawed thinking. - I agree and again the years of reading no-brainer decisions, well researched choice, what seems a panic choice and effectively the toss a coin show the choices can all go well or pear shaped – as you say there is no certainty. Salvage treatment after RT was a definite No but now I read posts indicating trials for just that - such as Man with PC. So who knows what the future holds

Dave” And in any case, as yet there is no one treatment proven to be better than another, is there?  IF there was, then all the surgeons or radiologists or speed planters would be out of a job, if there field of expertise was found to be at the bottom of the list.”

In my cynical mode: with less RT capacity than surgeons is there a bias to nudge folks towards surgery? We must think of the waiting times for treatment mustn’t we? - like I say cynical mode?

Whatever your final choice go with it 100% and don’t’ look back at the what if

Ray

User
Posted 28 Feb 2015 at 11:39

The point I was trying to make was that outcomes data says that if the first treatment fails then the man is less likely to get true remission whichever salvage option is available to him. In other words, a man who needs salvage treatment is less likely to still be in remission at the 10 year mark.

If that is true, then each man should choose the treatment he believes most likely to result in a cure rather than choose the option that has better salvage options if it fails.

Ray, I never thought about surgery v RT in terms of NHS capacity before - possibly cynical but nonetheless a consideration.

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

User
Posted 28 Feb 2015 at 11:49

Ray, My goodness you are a cynic, maybe justifiably so, I don't know?

My first meeting was with a surgeon at Amersham, lovely lovely man, took time with me to explain my situation, had a laugh with me when I laughed, and was sad with me when I was sad. If I was going to have open surgery I would happily have gone with him. But he told me to consider other options including Brachytherapy and HIFU. I think there was one more option, but can not recall it just now.

I was under no pressure to choose, and when I looked into it further and found that Robot was in Reading, and I could get referred, only after that decision and request and been made did he tell me that if he could offer that option he would have and he felt that it gave me my best option, all after I had chosen and made my request for a transfer to Reading. He, the man from Amersham came to Reading on his day off to watch his friend use the robot on me at Reading.  I went to see him later to thank him for referring me.  My GP who was also really wonderfully supportive told me after my Op when I was going back for follow up checks that they would have opted for the Robot in my position, and that a relative of theirs had also opted for the robot.

Now the cynic in you, or me, may suspect that all these people were just confirming that I had made the right choice as there was nothing I could do about it afterwards? So why ssip on my party?

I had a rough time after the op, in hospital for 3 days, discharged and was out for only 4 hours, then back in for a further 5 days, and recovery has been somewhat slower than the best or as the adverts proclaimed. That said I would not change my decision.

Hindsight is a wonderful thing except when considering choices like these.

atb for the weekend to everyone.

dave

Edited by member 28 Feb 2015 at 11:50  | Reason: Not specified

User
Posted 28 Feb 2015 at 14:52
Hi Dave,

As I've mentioned before, I've had a lot to do with Robbie (as the robot is know in Reading). I went to the press launch when it arrived. Photographed it demonstrating it's skills slicing up a cupcake, and have photographed countless cheque presentations as we, as the local community, have raised thousands to help keep Robbie working.

When I was diagnosed, my first thought was that I would have my prostate removed by Robbie but then came the news that my cancer was too far advanced to consider removal, so I had to have HT/RT. I have to wait two years to find out if the RT has worked now which leaves you with that feeling of uncertainty. My oncologist told me the RT was my only chance of getting rid of the PCa and couldn't be repeated.

That being said, I'm happy with my treatment. I'm pleased to have a chance of a "cure" even though I was told that I was at high risk of the cancer returning in the future.

Steve, best of luck with whatever treatment you decide on. Keep posting.

Steve

Edited by member 28 Feb 2015 at 14:55  | Reason: Not specified

User
Posted 28 Feb 2015 at 14:56

I find it all very confusing, I tried to do plenty of research, I couldn't really find any statistics saying any treatment outcome was better, I was more interested to find which had the better outcome in the long term, but could not find anything that outlined one over the other. I think it was very hard to make a decision, as I said the other half was never really offered surgery, it was only mentioned briefly, but I am sure had we asked about it there would have been more info. 

We were never told that it would be harder to remove the prostate if it returned, nothing was said about treatment if it returns. Everything I have learnt or tried to learn has come from the internet. I did say to the consultant "there is a high chance it will return 10 years along the line" and the consultant said that he expects to see less than 10% of patients returning 10 years down the line. My OH's decision has been made now and he has had the brachy, so no going back. Whether it was the right decision or not we won't know for a few years. My other half found out that an old farming school friend from where he used to live had treatment for prostate cancer 10 years ago, he died 10 years later (from prostate cancer) we think he had radiotherapy but know nothing more, so the other half thinks he now has 10 years. Mother in law had ovarian cancer and the chemo worked, she lived almost 10 years before it came back, on it's return she only lived a few months. Another friend has gone 12 years from his radiotherapy and psa is now on the rise, so it seems treatment only seems to last 10 years n the case of the people we know, yet the consultant said less than 10%. So as I said Confusing!!

I still worry every day about whether it will return and it hasn't even been cured this time yet! None of us know what is round the corner, my other half may get run over before it returns or I might die of something in the meantime, so I think I need to learn to chill out a bit! 

 

User
Posted 28 Feb 2015 at 15:10
Sonic

I think all of the above posts show you that you are not alone in finding it a difficult decision. They all also show that once your decision is made you have to go for it and know that you made the right choice. There are very few occasions if any where I can recall hearing or reading that someone desperately wished that they had gone down a different route.

Dave your Amersham consultant was one of the special ones there are still some around in the NHS and it is always heartening to hear about them.

sjtb I wonder did your husband have the time or inclination to do any research for himself? did he ask any questions that you may have missed the answers to? If a consultant deemed your Husband was in good enough shape and his disease caught early enough for Brachy then as I understand it an RP open or robotic should have been possible and RT as well for that matter. If choices were not made known to your Husband and yourself then that is very sad. Having Cancer is bad enough so having control over what happens after diagnosis can be physchologically important. As to the prognosis for those with 'cureable' cancer you may as well put the question on paper stuff it in a bottle and throw it into the North sea and wait for an answer.

Anyway I believe this has all been said here on Sonic's thread before.

So back to you Sonic

I wish you all the very best in your decision making, please let us know if you are still heading for surgery in April.

Best wishes

xx

Mo

User
Posted 28 Feb 2015 at 15:10

I could not have lived with the uncertainty after RT. It would have played havoc with my mind. I think the constant travelling for treatment would have been wearing, too. Those with a different nature may be able to cope, but even after the op, I have not yet suffered from the periodic PSA anxiety.

As I say, I am delighted with my choice of treatment. No regrets at all.

Paul

Stay Calm And Carry On.
User
Posted 28 Feb 2015 at 16:26

Hi Sonic,


I'm happy with my decision to have da Vinci surgery.

Like many others I had a choice of treatments available to me, but I wanted my prostate out  and was prepared to accept the risks that are associated with this procedure.

All treatments will have pros and cons attached to them, there is no guarantee that any will be successful, and it's not an easy ride whichever route you choose to take.

Each individual has to make his own decision based on advice received from the medical experts, his own preference and life style, and how he as an individual thinks he can cope with the possible side effects of whatever treatment he decides to receive.

I wish you well with whatever path you choose.

Luther

User
Posted 28 Feb 2015 at 16:30

He read the hospital info Mo, we were given booklets from the hospital, 2 on each treatment, treatments being EBRT, Brachytherapy and Surveillance. My OH read each booklet through several times, the Urologist said if it were him he would leave it and watch. Then we saw an oncologist, I did lots of research but OH didn't do any other than the booklets. The consultant pushed him in the direction of AS too, that was in October, psa was 3.7 in June, in the October 3.9 He said think about it for 6 months, the OH said he couldn't wait 6 months so he said come back just before Christmas. We had a psa in the Dec just before the appointment and it was 4.9 the consultant still pushed him to leave it, but we had spoken in the 2 days before seeing the consultant and decided we didn't want to sit back while the psa kept rising. As I said we were not really told anything about prostate removal, they had told us brachy would be better as the OH has bowel problems, plus as he works full time and can't take time off, the 4 hour round trip to have EBRT was just not practical. 

We were not told by the consultant that the prostate may not be able to be removed after brachy (I knew as I Googled it, or it may be in the booklets I will look) the other half thought he could still have more radio therapy in the future, as it wasn't explained, as I said future treatments were not discussed. The OH did not ask much really, he did make the Brachy decision, I had read all about surgery online, we saw he needed time off which he cannot do without paying someone on the farm, so we did just dismiss it, perhaps if more had been said on the subject then we may have looked into it more. Our friend had brachy 4 years ago with the same consultant and he did ask about surgery after brachy, consultant said he would do surgery after (told about incontinence problems after are higher) but the consultant said his brachy success rates are so high he didn't expect him back, that is similar to when I commented on treatment if it returns.

If it were me I think surgery would have been tempting. But it wasn't me.

User
Posted 01 Mar 2015 at 15:53

One thing that is apparent on this forum, is that no one from the site, supposedly medically qualified, with all their training and expertise and knowledge and experience makes any contribution. Some critical decisions having to be made by people diagnosed, and no professional input at all.

Just a bunch of people well intentioned, well meaning, sadly suffering in some cases, doing their best to help others.

atb

dave

User
Posted 01 Mar 2015 at 17:35
Dave

I suspect that is down to a fear of litigation, qulaified or not. It is a shame though as you say

xx

Mo

User
Posted 08 Apr 2015 at 00:07
Hey guys,been a while,,I see the the posts been piling up,lol

Well, I,m 5 days post-op and feeling pretty good let me tell you,I was a mess the day after,but was discharged late that day,and have been resting up and taking it VERY easy since.

The op went well and according to plan,I have a follow up in a month,catheter out in 3 days,stomach is starting to settle down,everything seems to be working normally so far in,and am now taking no painkillers,walking in my garden briefly,and actually feel i,ll be tentatively making an excellent recovery by next week.

As far as surgery goes,this was what it was....won't say it was easy..as u know...but taking the plunge and taking this route WAS the best for me.

Obviously..as with all..time will tell..but feel confident in my consultant and his words of encouragement pre and post op.

Will keep you all posted as to my recovery and how things go in the next few months.

You have all been highly supportive at a time when I really needed that kinda help,and I salute you all for that.

I wish you all well as always and my sincere love to you all...a simple thing but I,ve learnt a very powerful one too. :)

User
Posted 08 Apr 2015 at 07:34

Hi Sonic,

Good to hear from you and that you are doing well. So far so good.

dave

User
Posted 08 Apr 2015 at 09:26
Hi, Sonic,

I am 9 days post op (laparoscopic). Getting stronger each day. Not had a date for catheter removal yet but can't wait mainly so I can sleep on my side again. I had some constipation problems and was concerned about blood in thd bag but, like you, still feel I have made the best choice for me. I saw my dad die with advanced prostate cancer at 82 and it wasn't pleasant so being only 58 I thought lets get rid of this little rascal, hopefully, before it spreads as it did with Dad.

Today I'm planning a nice shower, getting into some day clothes and asking my wonderful wife to take me for a drive out.

Wishing you well for the future especially the histology feedback.

Paul

Edited by member 08 Apr 2015 at 09:29  | Reason: Not specified

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 08 Apr 2015 at 12:00

Hey Dave,thanks mate,hope your well yoself👍
Hey Paul,glad alls going well, I was due my catheter out tomorrow but after a knock at the door earlier this AM,it seemed the efficiency of our local District nurses,knew no bounds.
Straight in they came,no beating about the bush,a few words of comfort and Wham!,out she came like Sh..t of a shiny shovel!
Much to my relief,it wasn't exactly painful,more eye tingling..if u know what I mean.
No incontinence probs so far,so very happy with my short term outcome to date.
Btw,I was operated on on the 2nd,last week,so I guess catheter removal is subjective time wise.i,m feeling no ill effects,and the old pelvic floor muscles still seem to kick in when I need them!
Best of luck mate,you,ll be fine..think positive all the way.

User
Posted 08 Apr 2015 at 14:40
Sonic

wow ..so you made the decision and stuck with it and now it is done Bravo!!

The most important thing is that you now know in your own mind that you did what was right for you.

I am really pleased to read that all is going so well for you, sounds like you are well on track. Remember all your exercises not just the pelvic ones (anyhow I am confidently told the other ones are much more fun??!)

Best wishes

xx

Mo

Edited by member 08 Apr 2015 at 14:46  | Reason: Not specified

User
Posted 08 Apr 2015 at 15:48

Hi Sonic,

Good to learn you had your op and things are going well.

I would make a point that I have expressed in the past and is that one should not put too much store on the treatment success or otherwise of an individual one knows who has heard about, to the extent that is sways one's feeling as to what is best treatment for one's self.

I have a friend who had surgery which didn't completely do the job. He subsequently had HT and IMRT and his PSA after some 8 years is virtually undetectable. He was lucky in that it seems to have worked for him but salvage treatment such as this or of any kind might not give such good results for many but illustrates that a multi treatment can sometimes work. It is for consideration as to whether this should form part of one's thinking when deciding on a primary treatment option.

As regards an aspect that was mentioned earlier regarding there being no well qualified medical people as forum members, this does seem to be the case. We did have a retired GP post in the past but he has not done so for a long time and he did not have the knowledge of a Consultant anyway. No doubt the moderators in need can call on advice from specialist where dubious information is posted. Perhaps an article by a specialist detailing latest advances in various treatments would be interesting but it's a question of finding somebody with the time and inclination. Specific advice for individuals should, I feel, be best left to their Consultants who are in the best position to advise. So it is perhaps not surprising that we have no consultants on what is after all a support forum.

Edited by member 08 Apr 2015 at 15:50  | Reason: Not specified

Barry
User
Posted 08 Apr 2015 at 16:13

Sonic,

If you are already dry after just having the pipe taken out, you are a very lucky lucky man, congratulations. If I were you I would go out now and buy a Lottery ticket, with luck like yours, you will only need the one! It is good to read about some men who are dry instantly, it balances out for those of us who take a tad longer, and longer.

Quick regaining of urinary control also enables you to play about more often with less chances of leakage or seepage to regain some EF. Get on with it!

well done.

dave

User
Posted 08 Apr 2015 at 16:40

Blimey Sonic!

That's really good news so far regarding catheter removal and continence...

I can only echo Dave's comments.......Go out and buy a lottery ticket this weekend!....http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Hopefully your histology report and subsequent PSA results will show that your procedure was successful as far as can be ascertained at this stage of your recovery.

Very encouraging news indeed!

Best Wishes

Luther

User
Posted 08 Apr 2015 at 16:51

Sonic and Paul

Looks like job's a gud'n for you both.

Catheter removal certainly makes your eyes water. My nurse asked me to cough whilst she removed it. Don't think I was coughing at the end!

It's 2 days short of my 1st anniversary for me, but still leak a little. The next step is to see what happens if your little sticky can become a big sticky. I'm still struggling on that one, but there are signs that sildenafil is beginning to work. As it can take 2 or more years for nerves to heal, I am not overly worried at the moment.

Hope your recoveries continue to go well.

Paul

Stay Calm And Carry On.
User
Posted 08 Apr 2015 at 18:22
Hi Sonic

Glad to hear the good news so far.

Op is over

You are alive

Catheter is out

Continance looks positive

You have "youth" on your side so odds of EF returning are much better

Wishing you all the best with your recovery.

User
Posted 08 Apr 2015 at 18:49
Cheeers guys,,lottery is bought,plus signed up for about 5 betting sites,lol!..well hey..u could be right.

Seriously tho,I never expected results like this,in such a short space of time..just hope I,m feeling this way in a year.time will tell..

Understand what your saying Barry,but what else do we base our decisions on ultimately.we can only take on board the experiences of others,the positives and the negatives,and make personal judgement based on that.in the end without the help of all o u guys I may have found making that decision far harder,and possibly wrong.

Being thrown into the world of prostate cancer is not an easy one for any of us,with no prior knowledge of what that entails,you have to find others who can share experiences,ops,treatments,meds..etc,

Just glad I found u lot..warts and all..:)

User
Posted 08 Apr 2015 at 18:51
Cheers Tweedy,

'Youth' lol..u old fogie...I,ll have you know I,m a grandad of 8.

User
Posted 08 Apr 2015 at 18:53
Sonic

Great news mate, continence result fantastic, hope it all continues.

Thanks Chris

User
Posted 08 Apr 2015 at 19:04

Pleased to hear your op went well Sonic.

It surprised me to hear that the district nurse removed the cathetar rather than you attending the clinic for a trial without cathetar (twoc).

Did the district nurse check your urine output following removal of the cathetar. They usually want to be confident that everything is as it should be once the cathetar is out.

Bri

User
Posted 08 Apr 2015 at 21:10

Cheers Chris,hope your doing ok.
Hi Bri,no she told me that if I didnt pee within 6-7 hours to get myself up to A&E.
Was all done in my living room,over a cuppa.
My consultant recommended either the district nurse or my local hospital.having spoken to my surgery,they offered the DN,s services.
I will say though that I may have jumped the gun a little,I,m peeing ok, but am now experiencing a pretty strong pain in my groin post pee.
Rang 111 and was advised to get a urine sample up to hosp tomoz,just in case.
If this persists though I,ll be up there sooner than the morning,should add that I,ve no temperature,sweats,nothing unusual you might associate with infection other than this pain,which dies down relatively quickly,maybe 15 mins after.
Could be due to all the recent action my groin has seen recently so will monitor and see how it goes

Take care all.

User
Posted 08 Apr 2015 at 22:25
Originally Posted by: Online Community Member
Cheers Tweedy,

'Youth' lol..u old fogie...I,ll have you know I,m a grandad of 8.

I am no expert of course but the paperwork given to me about my op claimed that the younger you are (particularly under 60) then the chances of EF returning are much better. So I would regard 48 as "young" and something in your favour!

Congratulations on being a "young" grandad of 8!

I hope the pain you are experiencing quickly sorts itself out.

Best wishes from the "old fogie"! 😄

Edited by member 08 Apr 2015 at 22:28  | Reason: Not specified

User
Posted 09 Apr 2015 at 11:50

Lol Tweed,old man,and thanks for the aged advice:)
Spent 3 and half hours in my local A&E last night,a harrowing experience!.but one I needed to do,if not for the antibiotics I finally walked out with, then just for the reassurance that this was no more than the urinary infection I thought it was.
The pain was excruciating when peeing but passed very quickly,the cause? My catheter had roughed up the inner walls of my urethra and was being agitated by the flow of urine. Damn that catheter,first time I ever have one and on its way out,having caused me nothing but satisfaction,it leaves me a little reminder that nothing is often pain free,lol
Strong antis and 3 litres of water will I hope bring things back stable.

Good luck Guys.

User
Posted 09 Apr 2015 at 13:15

Sonic

Like Bri was surprised the district nurse took it out, I was given strict instructions not to let the district nurse do anything with the catheter.

Did you have the Da Vinci op, let me know ? My surgeon is convinced the way my catheter was removed has caused my on going stricture.

Thanks Chris

User
Posted 09 Apr 2015 at 14:35
Owwwwwch .. not the best night out ever huh?

UTIs do usually clear up quickly with anti Bs but be aware that they can also recur so don't wait until things become unbearable before you seek medical help.

The guys are right the removal of your catheter so quickly did seem unusual and rough removal can cause other pee related issues so make sure you drink lots of fluids, water particularly although cranberry juice also helps. Beer will not but it would take your mind off things!

Best wishes

Mo

User
Posted 09 Apr 2015 at 15:29

Good luck, hope you make a speedy recovery, my other half went down the brachy route (as I said earlier on in this post) we thought he had taken the easier option, but 3 and a half months down the line he is still suffering with severe burning with every pee and can't sit down for long as it hurts inside. I think they must have damaged inside with the catheter, he was in agony the whole time the catheter was in (only overnight) So things don't always go to plan! 

All the best.

User
Posted 09 Apr 2015 at 21:18

Hey guys,thanx for posting,
Chris,whats a stricture?
Mo,I,m on it,i,ve downed 3litres today,and have taken tramadol and paracetamol,the only thing that could touch the pain.
ibroprofen and the codeine from the hospital were a big zero.
Have used tramadol before,for other muscle strains,and it's a wonder drug.unfortunately can't down the beers with it,lol
Sjtb-hi,sorry to hear the other half is still having trouble,I think damage by catheter is a common problem,although not everyone suffers i,m sure,but any tube down your tube for any length of time,is bound to cause some friction,possible damage to the eurethra,aggravated by urine flow.
I had mine in for 6 days and developed a little light blood spotting at the tip,but thought little of it.on reflection this was probably catheter friction on the inner walls.
Hope all goes well

Take care guys

User
Posted 09 Apr 2015 at 21:21

Chris,I googled it...wonderful thing Google.;)
Is there treatment for that? Who removed your catheter?

 
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