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Well,I,ve been diagnosed today..

User
Posted 15 Feb 2015 at 11:28

Devonlad you said you were referred straight away to a surgeon, we were referred to a clinical oncologist, he specializes in breast, skin and prostate cancer, also does brachytherapy. I guess that the person you are referred to plays a big part, a surgeon is obviously going to push in that direction. As I said surgery was not really discussed as an option. Hospitals must vary a lot. I think it is great we have the choice to read up on the computer now, years ago you would have taken the path you were pushed towards. If I had not looked on here we would have still been on AS. 

We were told with a psa of 4.9 and gleason of 3+3 it won't have spread and that we could have brachy right up to the point of psa being 15. Having read other peoples profiles I can see that it can spread with a much lower psa, I am sure the gleason needs to be accounted for, but reading this was enough to make me get the OH to seek treatment. So for me getting the most information was important. If I had not looked all this up (the OH never really Goggles anything apart from farm stuff) he would definitely be following advice of AS. We have our appointment tomorrow, I have a list of questions I want to ask, including why they don't offer hormones after, as many people seem to think they are essential. Also the risk of bowel cancer. Will let you know how we get on.

User
Posted 15 Feb 2015 at 12:02

Hi sjtb - I'll PM you later, family arriving ;-)

dl

User
Posted 15 Feb 2015 at 13:21

Very odd - I checked your profile at 1am while replying and you clearly stated in the profile that he had refused RP because he was told there was a risk of ED. The profile seems to be missing now :-(

Higher up in this thread, you say that he was told hormones with EBRT but not with brachy (by one person) and something different by someone else, and that your husband said he didn't want HT.

As I said, RT without HT is unusual - generally, when people say RT on here we mean EBRT or IMRT and we use brachy to differentiate.

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

User
Posted 15 Feb 2015 at 13:38
Originally Posted by: Online Community Member

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 noconcrete evidence ATM that after Brachy there is any less chance of developing bowel cancer than with ERT the main advantage of Brachy over ERT isthat itconcentrates 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.

dl

Data currently indicates the opposite - that bowel cancer (although only a very small risk) is more likely after brachy not less.

The danger of PM rather than posting openly on the message boards is that no-one can pick up the mistakes we all make from time to time and correct any misinformation.

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

User
Posted 15 Feb 2015 at 14:23
No he didn't refuse to have his prostate removed, I don't think I have really done a profile, I only put wife/partner of someone diagnosed, I have never filled any other info, keep thinking I must at some point. If said anything on my first post it would be that he didn't want his prostate removed as he was so worried about ED and incontinence, but he never actually said that to any consultants.

I don't know anything much about brachy or EBRT causing bowel cancer, I don't want to know really, I have seen you say it before. We were told EBRT would cause more bowel side effects, as he suffers with an upset tummy all the time they said brachy would be better. At this point we told them about the farm and how taking a good 4 or 5 hours out the working day would be hard, this steered us towards brachy even more.

I will fire the laptop up shortly as I am on my phone and check out profile.

The only point I was really trying to make was that all hospitals probably take a different approach.

The luck is in the draw whether you live near a more advanced facility.

I have already said to the other half that when he retires and sells the farm to make sure a large chunk of money is put aside Incase one day we have to pay for treatment. We see on the news that many health trusts can't afford cancer drugs, so it would be nice having something to fall back on if needed. Though so far the only thing I can fault the nhs on is the long waits (and they nearly cancelled brachy the night before due to lack of nhs funding, had we the money we would have paid for it)

User
Posted 15 Feb 2015 at 14:32
Also yes, when we saw the lady oncologist she thought he would need hormones before EBRT. But not with brachy. She referred us to another chap, a clinical oncologist at another hospital and he said as the prostate is small already then no hormones are needed for either treatment. I will ask him tomorrow why some people have them after. Though as I said the people we know that have had brachy have also not had hormones, I don't know why but I will find out.

Checked out our profile and I have not done one, as I thought. My age is wrong on it, I'm younger, can't find how to edit it on my mobile, but I will try to do a profile.

Edited by member 15 Feb 2015 at 14:37  | Reason: Not specified

User
Posted 15 Feb 2015 at 15:25

Treatment refinements tend to become more widespread as research shows beneficial but there are will be exceptions to the rule in certain cases. As regards HT with EBRT, it was generally pretty widespread to have 3 months HT before RT. Following studies, this period is often extended now to 6 months. Also, although more variable, HT is increasingly being given from anything up to 3 years after RT. I do not know how this compares with brachy as I was not suitable for it and therefore have not studied it greatly.

Clearly, some hospitals are biased in favour of one treatment over another and provided a man is well enough will not cap surgery at 70. My hospital would have surgically removed my prostate when I was 71 if I wished but the surgeon said he doubted he could remove all the cancer so recommended IMRT which can reach further than the knife.

I am surprised that a hospital seems rather opposed to surgery as it remains the most effective treatment where the cancer is contained and can in need more easily be followed with RT. That is why my 2nd opinion who was a specialist advisor to the UK Government on radiation, told me the generally held view was that surgery was the 'Gold Standard' treatment for PCa. That is also why it is favoured for younger men because of their greater life expectancy.

But as has been said, where there are options, we make our own choices, if we feel we can do better by transferring to a hospital that offers an alternative suitable option we want, that is down to us.

Barry
User
Posted 15 Feb 2015 at 15:52
I expect you are right Barry, but I couldn't find anything online to support the outcome being better. I didn't clearly hear what the consultant said (it was a lady who referred us onto another chap) all I remember is something about they don't usually take the prostate out for someone in their 50's, with a low grade cancer, I remember something about bits can be left behind, causing problems in later life. I did not question it, knowing the OH would tell me off.

It was a Macmillan nurse that said they don't favour prostate removal in our hospital. But our decision has been made and brachy done, my other half went and saw a few people that have had brachy, a few others have had EBRT he also spoke to them. The only person we know that had his prostate removed I spoke of earlier, not seen him for a few years, though the other half knows where he works, but didn't see him as not been offered prostate removal. Having read what I have read perhaps we should have asked more, had it been my treatment I would definitely have asked. But it was not my decision.

Obviously treatment has been done now. There are surgeons who still remove the prostate after brachy if needed in future. Let's hope it isn't. He could be hit by a bus before then!

User
Posted 15 Feb 2015 at 23:02
Quote:

So Lyn

The following statement that I made on my earlier post quote "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"justifies your response of "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." does it? Well frankly it doesn't!

I joined this site to be encouraged and encourage and several of your posts have done just the opposite in my view and are not necessarily correct in the overall picture. e.g. I can send you, or anyone else reading this, numerous links to medical papers suggesting their is no difference in bowel cancer occurring after either ERT or brachytherapy, some that suggest that it's one way or the other and several suggesting that the risk with either is approx. 35 patients in 10,000 subsequently getting bowel cancer. I think most men or women with cancer of any sort would settle for those odds. However, the main point is - in order to encourage sjtp and others affected by this disease, is that the risk is tiny with either of these radiation treatments. Me, sjtp and others do not need to be confused with whether the risk is very small, very very small, tiny or the other way round! We just need to know that it is unlikely that those with PCa are unlikely to get bowel cancer after any form of radiation treatment. That's encouraging.

Alas also ... in answer to your post above "The danger of PM rather than posting openly on the message boards is that no-one can pick up the mistakes we all make from time to time and correct any misinformation." I agree .... but also if we are in danger of receiving some of the responses that you provide then I'll take the risk! I assure you that I can back up any of my 'factual' claims with evidence of where I got the information from. By the way it's not 4 months since I was diagnosed, it's 6 (apologies for being picky) .... and it's amazing what you can learn about a specific subject in 6 months when you have a lot of time on your hands and you are a trained researcher.

Nuff said.

I'm afraid you have put me off open posting on this site as a straightforward post can become confusing after your replys. This tends to defeat the object of me posting. I wish you well though as I would with anyone affected by this disease either directly or indirectly.

dl

User
Posted 16 Feb 2015 at 23:27

DL, for the record, the problem seems to have been me posting that my husband's first choice was brachy but he was declined this option for being too young. You responded aggressively to this, apparently your research indicates that my husband's oncologist is wrong. I believe that a whole oncology department probably knows a bit more than you do.

None of this helps Sonic, whose thread it is. I will not respond to your threads unless you post something which is factually incorrect or could harm others who might get the impression that you are speaking with authority. Please feel free to post openly, safe in the knowledge that I have no more desire to communicate with you than you do with me.

Sonic, I am so sorry to have dragged all this out on your space. I will stop now :-(

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

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..

 
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