Well,I,ve been diagnosed today..

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.

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.

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.

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

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

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

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