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Well, as the poster who started this fascinating discussion, can I thank you all for your contributions?
As luck would have it, I have two consultations -either side of Christmas -with people who's opinions I greatly respect: First David Bottomley of Leeds Institute of Oncology, and, later, Mark Emberton of HIFU fame at UCLH.
If you guys don't mind I'm going to put together an edited version of your posts and get their reaction. Whilst they're leading proponents of their therapies (brachytherapy and HIFU respectively) I think they're open-minded enough to look at ADT as AS as an option. I don't think I have updated my profile recently, so I will do that soon. The concern for me is that the most recent MRI showed more tumour than was first thought, and bilaterally. The largest tumour is also close to the edge of the capsule. So, on the one hand, this argues for radical therapy soon. On the other, because of the location of the tumour (in the apex) my chances of ED are higher than I would want.
As it happened (and completely without his knowledge) Terry analogy to cardiomyopathy getting a heart transplant as a first line of action proved precient. I do indeed have hypertrophic cardiomyopathy. My consultants recommended a focal ablation to address the atrial fibrillation that I suffer from. I resisted, and through diet, lifestyle and supplementation, I've reduced afib episodes to less than 5 a year - not enough to warrant a serious procedure (no matter what Tony Blair says!).
So, Terry's comment struck a chord, though I know PCa (G3+4, T2) is not the same as a heart condition which is more or less stable throughout your life.
Lenny's comment:
Lenny Hirsch
David learn about the disease. Look at Terry's and my stories just to name two. Do not let the cancer dominate you and do not be scared of it. Find a doctor who will work with you if you decide on AS. If neccessary you have many treatments to fall back on.
Is important, as, if I understand it, with intermittent ADT strategy, my options for HIFU or HDR Brachy are still open to me further down the line. During which time I will not have experienced ED, or other significant side effects. When you're a newly married 56 year-old, these things matter!
I'll let you know what the consultants have to say.
David you seem to have formed the view that ADT will not cause, "ED or other significant side effects", and that as you say, " when you're a newly married 56 year-old, these things matter!".
David quite simply ADT = "Chemical Castration". Perhaps Terry will be able to provide one on his little stories to elaborate further on all of the relationship issues that ADT can facilitate.
Terry we have discussed misinformation before, and you know I have strong views about the spreading of. Henceforth I shall no longer post on this forum. I should also be appreciative, if you would remove my posts in this thread as well.
John
Gee, John, what did I do on the misinformation front?
I have never said that ADT has no side effects, in fact I have repeatedly said that ALL treatments have side effects (the principle one of which is ED). On intermittent ADT, I have said that the side effects are minimised when in 'off' periods and I believe that to be generally true.
I am sorry that you have decided not to contribute, but regret I cannot remove your contributions to this, or any other individual threads. The options I have are to remove the entire thread or to leave the entire thread. Sorry.
I am in the process of writing up a piece covering side effects for all treatments which I will be linking to the Treatment Options page and will, of course, make the point that whilst on ADT there is not only loss of libido but also loss of erectile function in the majority of cases. Currently the relevant piece on HORMONE THERAPY says in part:
Reported side effects of hormone therapy are numerous but are usually, but not always, reversible if the treatment is stopped - these side effects are sometimes referred to as Androgen Deprivation Syndrome (linked), which results from lack of testosterone. One of the most serious - and some say, inevitable - results of hormone therapy is loss of bone mineral density or osteoporosis, which can result in fractures and/or collapse of spinal vertebrae. It can be treated/prevented IF the medic or his patient is aware of the risk. Regrettably far too many people in the medical world seem to be ignorant of the side effects of the drugs they prescribe, so the burden of tracking and education devolves upon the patient.
The principle side effects of of major concern to men are loss of libido and erectile function - this therapy is often referred to as "chemical castration" and men can and are labelled as eunuchs. Although little can be done about the effects of loss of libido and erectile function, this piece - Castrated, Emasculated, But Hardly Disempowered!(linked) might be useful for men concerned about emotional aspects of these issues.
If that is classified as 'misinformation' perhaps you'd be good enough to guide me as to what is missing? You can do this by e-mail if you are seriously intending not to post to this Forum again.
Terry ... no explanation necessary to Mr Bonneville.
Unfortunately opinions are often mistaken for misinformation. It's obvious to most of us that he simply cannot tolerate a differing opinion and that's too bad because I was thoroughly enjoying the discussion (well, the parts I understood anyway ... grin).
To Mr Bonneville (if you happen to check back) ... sorry to hear you're bowing out of this one. You were making some very good points.
I'm also sorry that Mr Bonneville has thrown his toys out of the pram. Let me say, categorically, that I have not been 'misinformed' by anything on this thread, or this board. Why? Firstly, because I'm a grown-up and I make my wn mind up. But secondly, and most importantly, because I wasn't talking about ED/ADT connection out of ignorance.
I've been taking ADT-lite (casodex 50mg) for 6 weeks now, and have no loss of libido (if you don't beleive me, ask my wife) nor have I - with the same help from Cialis as I've been taking for the past 2 years - any problem with function (again if you don't believe me, ask my wife)
So, it's not about being misinformed. We're all experiments of one, and I can truthfully say that. so far, casodex has not affected my sexual function or desire. That's my truth, it may not be others.
