Well,I,ve been diagnosed today..

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

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

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

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..

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?

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

Hi Dave, not sure what you are asking?

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

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

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! 

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

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.

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

xx

Mo

Hi Sonic,

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

dave

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.

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

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

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.

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

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

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

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

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.

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