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Ted’s posting under the header Hung Jury Re Treatment Options puts me in mind of a question I was asked the other day by a man who mailed me off line to ask how I had come to my treatment decision – not to have conventional treatment.
Part of the reasoning is highlighted by the view taken by many men when choosing surgery – that salvage radiation is available should the surgery fail. On the other hand surgery is not a good option as a potential salvage procedure should radiation fail.
In the way I look at things, this seems an oddity. It implies that the man thinks that his primary choice may fail – that’s fair enough, a significant number do, so no problems there. But….if the primary fails, does the man think that the secondary treatment (radiation in the case of surgery) will then succeed? If so, why not by-pass the surgery and have radiation if it is thought to be a superior treatment.
The same thinking is true for the radiation man who, knowing that salvage surgery is not a good option says that he can have Cryotherapy or HIFU or……. If they are going to succeed where radiation has failed, then why not go right there?
In the end the last refuge for anyone with failed treatments is ADT (Androgen Deprivation Therapy). Is it so wrong thinking to go straight there if and when you finally need treatment after watching for developments in the disease, which may never come? I don’t know, but for me, the past 12 years have been fine – no side effects from no treatment in the first 11 years: minor side effects in the last 9 months which may go away when I stop the ADT. I know the proof of the pudding is the next 10 or 15 years, assuming nothing else gets me before then. Watch this space!!
As I say, this approach reflects my view of the world and almost certainly does not accord with the thoughts of others. I am also not suggesting it is suitable for all diagnoses because it isn’t. I am merely putting it forward as a point to consider – and maybe discuss.
Thanks Terry. I have been having the same thoughts as you. I was told by Professor R Kirby, possibly the top prostate surgeon in the UK (the doctor's doctor) a man of international renown, that surgery was the gold standard. Not only does it remove the cancer from the body, it enables us to see EXACTLY what was there. This still makes sense to me IF treatment is decided upon. I had very small percentages of Gl 3+3 found in 3 needles out of 33 taken in 2 biopsies over 6 months.
My "mistake" was that the Professor and I did not take sufficient account of my previous TURP. The TURP was performed by a colleague of Professor Kirby, also a leading Professor. It was a great success for me - all urinary symptoms gone and all other functions preserved (and I would say improved).
But what neither Professor took sufficient account of was how that TURP would affect their ability to completely remove the prostate. It seems that with all his vast experience, my surgeon had not actually perofrmed many prostatectomies after TURPS. He siad he lost all his landmarks and left those 10 grams in me.
I think I read somewhere here on YANA recently that a man was pleased to hear that his surgeon who had done well over one thousand Robotics had experience of doing them post TURP. What was that experience? About 12 cases. Out of one thousand!
My advice to anyone going for surgery is that if you have had any previous abdominal surgery that might have left scar tissue, check out that this will not throw your surgeon off.
The medical profession are extremely good at finding cancer. The real advance though will come when they know WHICH ones they find will need treatment and what type of treatment will be best. Also they need to be able to define who needs salvage treatment and why. I notice many guys here who have elevated PSA after surgery, even small elevations, with otherwise good post operative pathology who then get blitzed,zapped and blasted. I wonder if they, like me, have rogue bits of prostate left behind which could, possibly, be quite benign.
In my case, Terry, since I chose treatment I might have been better advised to go straight to HIFU or radiation because of those missing landmarks. Interestingly, the new urologist who is monitoring me, Mark Emberton, is a leading exponent of HIFU in the UK. He speculates that I may well have had insignificant cancer (0.3cc of 50 grams excised, good pathology), but that we only know this because I had the surgery!
Just to pick you up on one point about being able to have salvage treatment after any form of primary therapy. Both my surgeons confirmed that surgery after radiation is not generally possible. I also told my HIFU man some of the HIFU horror stories on YANA and he said this is most often caused by scar tissue from primary radiation (in whatever form it is done). It seems to me that radiation is the point of no return.
I think it is very difficult to ask a young man (45 to 60?) to wait and observe however active that surveillance is. I know you did do just that, Terry and I wish now that I had been able to do that. But I could not comfortably live with that growing inside me.
Although my operation was a failure in many ways, it did remove 4 (small) tumours. They are gone. But having gone through this and the incontinence which cleared after 4 months and the ED which I still have, I am now very intervention averse. I have also become much more relaxed. I am going to probe and investigate my remaining bit of prostate more thorughly than NASA is is probing Mars. IF any cancer is found I am much more open to active surveillance than I was. I am still not sure if I have the personality and character to be able to do this though.
The point is that I am only able to think this way because I did have the surgery. I did have 4 tumours removed and after my upcoming sequential scan and further investigations I will know a great deal more about what I may decide to watch and wait.
I do not see that I had a choice as to which treatment, it was quite clear. I was given the facts as best the med estab could determine them. It is your choice in the end. With High G scores, moderately high PSA, all 12 bio samples had cancer, nothing detectable outside, but the implication was that there had to be cancer beyond the prostate. My schooling & work involved a lot of radiation physics, so I thought I knew what I was getting into. You just do not know exactly what is going to be zapped. And you do not know how long it will take the good tissue to recover. They were very careful about not hitting the bladder, not so careful about hitting the colon & rectum. As you and many others say, I wanted it all out or dead, especially the stuff that could not be seen. So, the primary treatment had to do the job. As stated previously, I had hemorrhroids going into the beam treatment. So, the surgen said to wait three months after rd tx and then take out the hemorrhroids. I did, but here it is mid June, and the H surgery was Feb 4, 2008, have not healed yet and must remain somewhat close to the toilet.
Joe
