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I’d just like to again say thanks all you folk who responded to my previous post titled “Some insights from my latest encounters” on August 3, 2013. There is not a great deal of good news following my recent procedure – cystoscopy, the resection of the urteric orifice and the placement of a stent to ease the problems in my left kidney. My urologist, Dr Tong turned out to be a first class man – and doctor – and we had a good chat before the procedure and settled some thorny issues from our first meeting. He acknowledged where I was coming from and that my decisions until now have been reasonable.
He came to see me on the evening of the procedure with his portfolio of amazing pictures which showed the growths in my bladder, and the masses blocking both ureters. The growth at the bottom of the left kidney ureter was much greater, and apparently older, than was expected based on the scans. That kidney was almost completely blocked and seems to have been for some time now. The ureter is so badly damaged that the kidney may not recover. He was not able to put the correct sized stent here and had to use a smaller one.
But the first big surprise was the ureter from the right kidney, which was also badly blocked, although this had not shown up on the scans. It became clear that I have been operating on this one kidney for some time and it is now not functioning very well - to say the least! The expectation is that the stent which he was able to insert will result in this kidney regaining most of its functionality. And the first bit of good news is that from the initial blood reports, the creatinine levels which are used to judge functionality show a rapid drop back towards normality.
The pathology results on the masses was the second big surprise. I have always been intrigued by the question as to whether all prostate cancer tumours progress and change from those with a low Gleason Score to ones with a high Gleason Score. My view was that this was not necessarily a universal rule. It is somewhat ironic therefore that a study published last week Gleason Grade Progression Is Uncommon with an excellent commentary at How low is the risk for Gleason score progression over time? confirmed my view. Yet despite my initial diagnosis 17 years ago of a GS 7a (or GS6 or GS5 depending on which pathology report you chose) the histology report for the bits removed from my bladder all showed GS 5+4=9. No question of progression there!
So that changes the game somewhat. Although a GHS 9 diagnosis tends to send shivers down the spine and to induce a somewhat depressive outlook with the expectation of an early demise, in fact there are many exceptions to the rule. One of the few long term studies shows that men with tumours that have Gleason scores of 8 to 10 face a 60% to 87% chance of dying from prostate cancer within 15 years of diagnosis. This is mainly because at the time the study was done the men tended to be older rather than younger and died from some other cause. Another more recent study puts the mortality at a little over 50% in a ten year period.
I am inclined to the view, being just a tad of an optimist, that I will be on the right side of the estimated mortality rate. There are many new therapies that have been introduced since the first study was done and as the stories on my website show, whilst there are many men with a GS 9 diagnosis who have died, there are many more who have lived.
I have already started the next roundt of ADT (Androgen Deprivation Therapy) with Androcur to which will be added Eligard or Zoladex and possibly one of the third elements that make up ADT3. Dr Tong says I must seriously consider EBRT (External Beam Radiation Treatment) – and I will, bu I am still very reluctant to go down that path.
It was always my aim to have a twenty year survival – and since my procedure was carried out almost seventeen years to the day from my diagnosis, that leaves three to go, I reckon I have a chance of getting there.
Zowie! What a beautiful job of self-reporting. The report contains a dramatic mix of good news and bad news; more good than bad in my estimation.
With that positive, determined spirit of yours, there is little doubt that you will surpass your 20 year goal. I am in your corner on that one Terry, and I am confident all of us are.
Best wishes Don O.
Terry, I have a friend who had 9s and even 10 Gleason, DRE showed lumps all over. Surgeon said it will have spread to nodes, but there was no spread. Docs. took him off Lupron after like 12 years about 2 years ago and said would go intermittent when needed; that has not happened yet!
I am leaving your post up for the moment John Paul, although it seems to me that there may be some hidden agenda since the address you give is for an organisanistion called Indiana University Health. Linking to the site triggers off a warning on my computer.
Can you please respond and tell me if you are acting on your own behalf or for the organisation? Failure to do so will lead me to believe that this is a commercial phishing posting and to delete it.
If you were genu8ijely interested in the men's.... big fears or frustrations? What have you tried that hasn’t worked? What do you need help with? browsing the 1200+ stories on line would have helped you focus on those issues.
Good luck on the next leg of your journey! I know you'll do well. Remember,I was tagged with a GS9 4 years ago and as a result of intermittent ADT I'm still here. I looked up the details on Androcur (cyproterone acetate)) and I read it has weak progestogen activity, ie., it acts like progesterone and can be used to treat hot flashes, which would make your side effects more tolerable. And remember, YANA.
I'm still here and still watching your life story. I really respect the choices you've made and watch your life story constantly. As a Christian man I will definitely keep you in my prayers, as I have since we met years ago now. God Bless and keep you and your family.
I was so sorry to read about your recent GS9 diagnosis. I initially hesitated to write because your knowledge base is so extensive on this subject. Still, I thought if I could help, then I should go ahead and try. So, I want to talk to you about two things.
First of all, back on January 20th 2012, you wrote the following in response to my forum request for information on Lupron’s lingering effects:
"One of the points made very strongly, by men whose views I admire was that Proscar had changed the structure of the cells in some cases making them appear to be less well differentiated and therefore being given a higher Gleason Grade. Dr Gleason himself said that his system should not be applied to material from men who had been given Proscar.
So, MY PERSONAL VIEW is that grading of material recovered after ADT MAY differ from material recovered from the same gland prior to ADT and I would personally not rely on those results.
Of course, in MY view this also means that if the ‘aggressive’ tumours diagnosed might have been incorrectly graded, the less aggressive ones might also be incorrectly graded. In other words the apparent reduction in the number of men diagnosed in the Proscar arm may have been a function of under-grading because of the change in cellular structure".
So, I was wondering if you thought about whether or not your past ADT use might be giving you a falsely aggressive Gleason score? Was this possibility discussed with your Dr., and did you give consideration to contacting Dr. Gleason himself for his view on the subject?
Secondly, I had a reader contact me as part of the YANA mentor program and ask me, among other things, for my thoughts on Donald J Porter's baking soda protocol. My response to him was as follows:
I found the protocol for that on the computer. On the surface, it seems very encouraging, even great. Still, I agree that a healthy skepticism is in order. For example, the information on his website was dated 2011. He claims it has worked for hundreds of others, but if that is the case, then why hasn't the information spread like wildfire among the PCa community? After all, there are many men out there desperate for a cure. The reality, though, is that two years have passed for word to get out and yet, I have not seen a single post on this subject on the YANA forum. In fact, might I suggest that you place this subject on the YANA forum and see what kind of feedback you get from Terry and the others. I would certainly be interested in reading what they have to say. In the meantime, I will hold off. To do so does not seem to carry with it any risks. After all, the man behind all this had stage 4 cancer and still managed to be cured. So, this doesn't seem to be the type of treatment that has a window of opportunity that may close if you don't take advantage of it sooner rather than later.
Frankly, it seems like snake oil to me, except for the fact that he's not charging for the information. Instead, it is right there on his website for anyone to take advantage of. So, what I was thinking is that if I was a Gleason 9, then I probably would try it since I would have almost nothing* to lose and just possibly, however remote, everything to gain.
*I say almost nothing because there are some minor side effects that he talks about and makes some adjustments for.
Okay, that's it. My thoughts (and I'm sure the thoughts of all of the readership) are with you --- our "fearless leader."
Thanks for your post Alan - your wise and balanced words are always welcome.
You say in part I was wondering if you thought about whether or not your past ADT use might be giving you a falsely aggressive Gleason score? and indeed i have had the same thought occur to me, especially in the light of the recent study showing that the 'high grade' men in the Proscar study have not fared as badly as other high grade men.
I am preparing anote for my doctors asking a number of questions (this to keep down the time in our appointments and the points I want to make regarding the GS9 histology are these:
1. When ADT was first introduced as a neo-adjuvant therapy for surgery, a number of well known doctors (inlcuding as my memory serves me, no less a person than Patrick Walsh) declined to operate on men who had ADT on the grounds that in those pre-Da Vinci days the structure of the cells in the gland made it difficult for them to idetntify tumours and to ensure that their margins were safe.
2. Then came the Proscar study to which you allude and the statements regarding the possibiity of changed cellular stuctures. It is a nice coincidence that the secondary study was only published last week which on the face of it seems to show no greater risk for any of the Proscar men.
3. Yet another study published two weeks ago suggested that in many (or perhaps most) cases Gleason Scores tended NOT to advance over the years.
4. Given these broad brush insights into some fo the oddities of the Gleason Scoring system, is there a possibioity that my previous ADT sessions altered the structures of the cells - after all there is no direct evidence that these are behaving like the aggressive GS9 cells that are so dangerous. On the contrary, the apprently indolent way in which the cells have grown point to them more ikely being GS6 or 7a still.
I don't know how he will react to this - hopefully it will not be seen as a challenge, but a seeking after knowledge at the feet of the guru.
As to the baking soda protocol. I recall looking that up some months ago but found nothing to convince me that there was any real value in it or that it was any different from all the other protocols that are bandied around. Interestingly enough there are four men on the Yana site who used, or considered using the protocol. Two live in foreign climes. The men are:
AS for intermediate risk PCa in middle age men. Attention Terry!!
The last time we crossed swords, I said I would be back in five years. Unfortunately given your change of circumstance ( yes I have been watching), perhaps it is timely to have this discussion now.
I was very sad to read of your disease progression with metastasis now being clearly evident, and of course you now having to be dealt with them using conventional medicine.
In light of your now verified progression and knowing what is ahead of you (GS 5+4), are you still willing to sing the praises of AS for middle age men with potentially curable intermediate risk PCa?
As always I wish you good passage on your journey.