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Well,I,ve been diagnosed today..

User
Posted 10 Feb 2015 at 21:38
Sonic

I was back at work four weeks after my DaVinci RP. I was almost dry 4 days after catheter was removed. 9 months post op ED is still an issue but my OH and I still have fun. It was not all plain sailing and I have had further procedures (see my profile). Lynn says my recovery was amazing,but it was as predicted in the literature I was given "back to work within 2_6 weeks." We all recover at different rates, back to work may also depend on your type of work. What is a reinstater hug driver ? I did pelvic floor exercises for four months pre op and still do when I remember. My biggest fear was incontinence but was I lucky or was it the skill of my surgeon ? Make sure your are comfortable with your surgeon, mine had carried out about 140 Da Vinci procedures when it came to my turn but was very experienced in laparoscopic surgery.

Hope all goes well for you.

Thanks Chris

User
Posted 11 Feb 2015 at 17:36

Hi Sonic -- As Chris says, the time taken to get back to work will vary from person-to-person & be dependent on many factors -- age (very much in your favour !) fitness (ditto from what you say), what sort of operation (healing post-laparascopic is generally quicker due to smaller wound-incisions), degree of continence following operation, mental attitude....the list is a long one, but 4 weeks is fairly typical.The fact that I took 5 weeks off work was due to my employer being extremely considerate & had absolutely nothing to do with the fact that my period of convalescence coincided with Wimbledon & the World Cup on the telly! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

On the continence side, if you're extremely fortunate you could be dry after 4 days like Chris. As I think I mentioned I took 7 months to achieve that enviable pad-less lifestyle. In the bedroom department, even with nerve-sparing surgery ED will take longer to sort out. Your surgeon should discuss your priorities in relation to potential side-effects before the op, but I would imagine they'd be pretty much the same as mine, in order of importance:

(1) Get rid of the cancer

(2) Minimise or eliminate incontinence post-op

(3) Preserve erectile function in the longer term post-op

All the very best. Let us know how you get on.

Morris

User
Posted 13 Feb 2015 at 17:23

Hi Sonic. Just wanted to share with you that I am on a similar journey and have had all the same worry over choices. I saw my surgeon today and am booked in for surgery on 9th March. As daunting as this is to comprehend I want the problem removed in the same way I would want an old and decaying tooth extracted. No one can foresee the after affects and side effects until after surgery so I am just focussing on the surgery now and will deal with the aftermath when that is all done and dusted. I wish you well with your condition and hope you make a good recovery.

Edited by member 13 Feb 2015 at 17:23  | Reason: Not specified

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 13 Feb 2015 at 20:41

I have to say that I think you are all brave going along the route of having the prostate removed. When we first found out my other half had prostate cancer he completely panicked at the thought of it being removed. He can't take time off work being a farmer which was his initial worry. But when we saw the consultant they gave us info on brachy, radiotherapy and AS. The consultant said he wouldn't recommend surgery in a man as young as my other half (57) yet many of you are younger, he never mentioned it again. (Much to my other halves relief) I wasn't quite sure what he said about having it removed, something about bits being left behind and not being a good idea in someone so young.

 I do feel though that if you have it removed at least you know it is gone, I am sure it can't be known for certain if it has spread without actually looking inside? As some of you know he had brachy 5 weeks ago. Am I correct though, that the statistics of it returning are the same whether you have the prostate out or radiotherapy?

I know there are more options on treatment if it returns after removal, you can have radiotherapy, whereas if you have already had radio treatment you can't have it again. Nobody actually told us this at the hospital, I had found it myself online. The other half read that they can put in up to 120 seeds with brachy, he had 55 seeds, he thought that meant when it returns he can have the other 55 seeds put in...I had to explain it doesn't work like that! Just hoping when (I suppose I should say if, but I am a pessimist) it returns that there will be some new treatment for people that have already had the maximum dose of radiotherapy!

User
Posted 13 Feb 2015 at 22:05

I guess I'm one of the lucky ones,surgery at 56, getting on towards 2 yrs this coming July not sure what age those those that say that too young to have the op mean.

Dry after 7 months no erectile problems,manual handling helps.I think general fitness helps,I'm no marathon runner but liked/like a good walk to keep relatively fit,the skill of the surgeon is also a factor.

 

Sadly it must be realised for some incontinence remains a problem long after surgery,Capitalman springs to mind (is he still around?) I suppose this is the main concern of all who undertook the surgery route.

 

Will the cancer return who knows but to me at least the option was the much preferred route and I don't regret it one bit.I would add make your choice on treatment what best suits you and don't look back.

User
Posted 14 Feb 2015 at 00:28

Originally Posted by: Online Community Member

I have to say that I think you are all brave going along the route of having the prostate removed. When we first found out my other half had prostate cancer he completely panicked at the thought of it being removed. He can't take time off work being a farmer which was his initial worry. But when we saw the consultant they gave us info on brachy, radiotherapy and AS. The consultant said he wouldn't recommend surgery in a man as young as my other half (57) yet many of you are younger, he never mentioned it again. (Much to my other halves relief) I wasn't quite sure what he said about having it removed, something about bits being left behind and not being a good idea in someone so young.

Thanks for this sjtb but it is something that confuses me. My original consultant (a surgeon) clearly tried, big time,  to persuade me that surgery was by far the best option for men as young as me when I was diagnosed with PCa (I was nearly 59 when diagnosed). The work these consultants are doing is brilliant .... but there needs to be consistency in their messages. Perhaps the NICE regulations will help - I certainly recommend anyone diagnosed with PCa to read them before agreeing to their treatment.

dl

User
Posted 14 Feb 2015 at 01:40

Too young, too old ..... John was refused brachy for being too young and opted for surgery instead. He was 50.

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

User
Posted 14 Feb 2015 at 08:39
Yes Lyn I have seen you say that before. I suppose each person. Consultant etc has their own ideas. The lady that said removal was not a good idea was a general oncologist. I don't think she specialised in prostate cancer. The next chap we saw just does prostate cancer, mostly brachy, so that is the direction he suggested, though he really tried to persuade us to do AS. We did for a few months, he never really suggested surgery at all. I just tried to research which one had the least chance of a return. But I could only find similar rates for all 3 main treatments.

We have a friend that had his prostate removed very young in his early 40's not sure exactly why, but I know he had just lost his father to prostate cancer. 15 years on he is still fit and well. We have another friend that had radio treatment 12 years ago, his Psa is now back on the increase. Not sure if this means removal is better, I think it is more a case of not knowing what will happen later in life.

User
Posted 14 Feb 2015 at 11:00

Been here for circa 10 years, I’ve still to see a best treatment for all. It also needs to be born in mind it’s not just the treatment that gives the best result as it’s also down to the unknown of such as are there any stray cells laying dormant somewhere waiting to mutate further. You can look at the charts saying x staging at x age gives x possibility of that being the case, but its still an unknown. All I can say is make the choice on what you feel looks the best option to you now. At 58 I would have chosen brachy because it would allow me control over my quality of life than the unknown quantity. However my staging ruled that out so I went with what I saw for me was the next best, RT/HT.

Good luck in your choice.

Ray

User
Posted 14 Feb 2015 at 11:05

You know my view - I think that whatever your husband said in those initial appointments about the farming and needing to be back on his feet in the shortest time was the reason surgery wasn't pushed.

EPIC provides valuable comparisons of the impact of the different treatments and UK stats suggest that the 5 year, 10 year and salvage outcomes are pretty much the same for RP, RT and brachy.

Re the brachy, at our hospital (a cancer centre of excellence) the alleged increased risk of bowel cancer some years later means it is not offered to young men whose life expectancy could reasonably be believed to be long enough for the bowel cancer to develop

Edited by member 14 Feb 2015 at 11:22  | Reason: Not specified

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

User
Posted 14 Feb 2015 at 11:54

Yes Lyn he would have struggled to work, but at that point they had not asked what he did for a living anyway, no one asked at urology or at oncology. They only asked if he worked once we were referred to the brachy chap.

I can quite believe brachy causing bowel cancer and bladder for that matter, my other half has been burning constantly in his prostate, bladder, back passage and right to the tip of his penis, it seems constant, was ok first week or so and gradually getting worse and worse, it can't be doing him any good. Seeing consultant Monday thankfully.

Edited by member 14 Feb 2015 at 11:57  | Reason: Not specified

User
Posted 14 Feb 2015 at 23:06

Originally Posted by: Online Community Member

Too young, too old ..... John was refused brachy for being too young and opted for surgery instead. He was 50.

Not sure what you're point is Lyne?

dl

User
Posted 14 Feb 2015 at 23:36

Originally Posted by: Online Community Member

You know my view - I think that whatever your husband said in those initial appointments about the farming and needing to be back on his feet in the shortest time was the reason surgery wasn't pushed.

Lyn

Surely choice of treatment for any man with PCa has a lot to do with their personal circumstances. e.g. I am self employed and 6 weeks off work after RP is not an option for me as it wouldn't be with most farmers. My understanding is that bowel cancer occurrence after RT is a measurable statistic but still very, very small whereas continence and erectile problems after RP are considerable. Even the surgeon I first dealt with admitted this.

Also my understanding is that whilst there is no concrete evidence ATM that after Brachy there is any less chance of developing bowel cancer than with ERT the main advantage of Brachy over ERT is that it concentrates the radiation in the area it is most needed and avoid 'collateral' damage to other nearby parts of the body ......... in which case one would expect the results of the current studies would eventually show that after Brachy one has less chance of developing collateral radiation damage. Also with Brachy serious side affects (continence and erectile functions) are overall less of a problem than after RP and therefore disruption to 'normal' life, which is more important for some than others, is much less.

If, as may be offered to me if my cancer is very localised, they can offer treatment that targets the cancer rather than the whole of the prostate gland then the possibly of bowel cancer occurring after Brachy (which is already very, very small) would be even less.

As we are all individuals both physically, spiritually and mentally and our cancers and personal circumstances are almost unique then the range of options men would chose, if offered the whole range of treatments, are likely to be wide.

My view is that a man should be clear that whatever treatment they eventually have they have chosen it, or are 'happy' with their consultants choice.

All should be offered the full choices without prejudice.

dl  

Edited by member 14 Feb 2015 at 23:38  | Reason: Not specified

User
Posted 15 Feb 2015 at 00:57

DL, it is great that 4 months after diagnosis you are such an expert - I shall pass your advice on to our local centre of excellence in the hope that they realise the research is wrong and change their treatment policy.

Your belief that all men should have all choices is well meaning but naive. In sjtb's profile, she clearly states the reason that EBRT was unsuitable for her OH, and that he refused RP when they told him he could be left impotent. Difficulty getting someone to milk the cows meant that brachy was attractive as it allowed him to be back at work 3 days later which certainly isn't possible after RP. I think you could say that other options were opened to him and he chose what he thought was best.

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

User
Posted 15 Feb 2015 at 01:06

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Too young, too old ..... John was refused brachy for being too young and opted for surgery instead. He was 50.

Not sure what you're point is Lyne?

dl

 

Sorry - which bit don't you understand? Some people are too young for some options, some people are too old. In general, young men are encouraged towards surgery and older men are pointed towards radiotherapy. There are exceptions - men with heart problems can't always have LRP and some men with breathing problems struggle with HT. A few have the RT without the HT but this seems increasingly rare. A friend of ours was put off brachy by the fact that he would not be allowed to cuddle his grandchildren for a while - pre-existing medical conditions prevent him from having RP so he has opted for active surveillance instead. 

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

User
Posted 15 Feb 2015 at 08:29

DevonLad you are right in that consequences of any treatment option need to be considered early on, but some consequences are more important than others, are they not?

Some people here post that they will go for a treatment option so that they do not have to travel too far for follow up treatment or so that they can be visited more easily by relatives. One of your factors appears to be so that you can carry on, or get back to working on the farm as soon as possible?

Can understand that this would be a concern for you but not that you would opt for the treatment for this reason? Sure the clinical reasons are the only ones that should govern our treatment choice, as far as is practicable?

Anyway, you have decided and I hope it all works well for you, in terms of recovery and longer term prognosis.

dave

User
Posted 15 Feb 2015 at 08:50

When we first thought my other half had prostate cancer (between biopsy and results) I googled all treatments, he said he would not want to have it removed.
When we spoke to the oncologist, he did not tell her he didn't want it removed, neither did he say he was a farmer. She just went through options, she said due to his bowel problems she would not recommend EBRT she said removal was also not recommended in man so young, HE NEVER REFUSED IT, she said Brachy was a good option but thought AS was best.
Hospitals obviously do things differently, we were given a large pile of books on Brachy, AS and EBRT and told to have a good read through. No info was given on removal, it was definitely not him saying he didn't want it removed as he only said that to me.
The only thing he told the oncologist he didn't really want was hormones, having seen a friend blow up on them, also I had to have zoladex myself for 6 months and went from 8 stone to 11 ( amazing that zoladex is for woman too!) but he told her if he had to take them he obviously would. But they said prostate was small so hormones not needed. I noticed Lyn that you said it is rare to be offered no hormones, we have 3 friends all had brachy in the last 3 years, none had hormones, we were not offered them either, one of them had an aggressive cancer but still contained, the others were like my OH with a gleason on 6.
So our hospital does not favour removal.

Edited by member 15 Feb 2015 at 10:37  | Reason: Not specified

User
Posted 15 Feb 2015 at 09:40

Actually while doing my ironing this morning I have been thinking of the time he was diagnosed, the urologist told us the biopsy results, he said we would be referred to oncology, he then sent us into a room with a Macmillan nurse, she briefly ran through treatment options with us, she said at this hospital they avoid removing the prostate unless really necessary, she said you can ask for one in in the future (at that point AS had been recommended) she said it can be removed up to age 70 then they won't do it anymore. But I definitely remember her saying they tend to not offer it, she went on to explain how common it is in America. We thought no more of it.
When I visited this site I realised how many men have had it done and I can understand the reasons.

Edited by member 15 Feb 2015 at 10:34  | Reason: Not specified

User
Posted 15 Feb 2015 at 10:30

Originally Posted by: Online Community Member

DL, it is great that 4 months after diagnosis you are such an expert - I shall pass your advice on to our local centre of excellence in the hope that they realise the research is wrong and change their treatment policy.

lol - I guess their is no point anyone posting on this site except Lyn then!

I would like to ask which part of my post disagreed with the 'experts' but to be honest I'm not really interested in hearing your reply.

Think I'll stick to PM's from now on.

dl

User
Posted 15 Feb 2015 at 10:41

As I put above Lyn they do offer brachy (and EBRT) with no hormones, we have 3 friends all have had brachy and were not offered hormones, it must be more common at our hospital. My other half was told he did not need them for brachy or EBRT, perhaps they are wrong, but we can only trust them. Perhaps yours is a better hospital, but we have no choice on that one!

 
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