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My apologies, Jack. Put it down to a failing memory. I had overlooked the fact that you had submitted your story and that I could get the information from there.
With A Gleason Score of 9 and a PSA of 800 all the probabiooity calculators would suggest that there was a very high probabiity of the disese being beyond the gland.
Assuming that your urologist could not feel anything on DRE, you might have been staged at T1c, although I see you do not know your staging. The Partin Table show this data, the figures in brackets being the range of probabilities expressed as a percentage and the first figure being the median of the figures, again expressed as a per4centage. As you will see on this quick calculation, there is somewhere between a 26% and 42% chance of the disese being confined to the gland.
You mentioned 'organ confined' docs should inform people that this is not definitive and basically many men have heard it being organ confined only to find out thereafter, it was in fact not true. They have statistical data just like the idea of Partin tables, and can try to predict if organ confined, those with ultra low stats have the best prognosis and may in fact have it confined. So, I would not rely on such talk as guaranteed or prognosis you can count on.
Same thing when some docs say post surgery, we got it all. Another stupid statement, they cannot know with certainty. Micro mets can exist and go undetectable for years and years, PNI could be the reason PCa escaped to elsewhere in the body and missed biopsies can harbor PNI, or different Gleason scores and even other variant types of PCa. So, it all gets really complex and this explains the percentages of failures that we see in various treatments. The whole disease is far from perfection in analyzing and deciding upon treatments, some docs will actually say so and others will make it sound like they are experts and some of those end up with egg on their faces, too.
It seems the scanning method at Sand Lakes Imaging (ferheme) looks superior and especially for finding lymphnode envolvement. Combidex method is no longer available, but was likely the best ever (quoting Dr. Strum). There are some other scans that are a little better than others, so good hunting. But, none are at the level of perfection we are seeking, as far as I can tell. Hope you do well. WIth your psa reaching 800 you are beyond the level of uro-doc and should be seeking a PCa oncologist if possible.
Depends upon the doc, my doc is actually a hematologist but has a PCa seminar group that he leads and is his secondary passion apparently. He is totally open, honest and fabulous....even has let me the patient have decent input into my choices and allowed me a script for DES back in early 2005, which has serve me super well and about no side effects over almost 8 yrs. of coverage (intermittent and 1 yr. off it included in those years). I did ADT3 the first 2 years of diagnosed, only by demanding the combo and using 2 docs to get it done. But, the side effects got nasty enough and I had 8 one month psa tests showing all minor increases= it is going to fail controlling PCa. So, I switched drugs via finding this new doc and firing the lame uro-doc.(his plan was Lupron for life)
So, if you can find the best doc for your interests consider that golden. The patient should have huge input on what you want to do, the side effects, the costs, the benefits and rewards and the downsides and costs envolved. Seems the independent onco type docs can offer more options and try different therapies. I can tell you that sequencing or trying different drugs besides chemo can render results with quality of life added. Example sometimes failing on casodex can be handled by trying eulexin or nilandron or switching to any of the estrogenic drugs or Keto and other options. Same can be said for Lupron, the best way to know with certainty is to actually try them and see psa results and other testings. Sometimes a drug can be re-tried later and might work again atleast for awhile, although not many would likely tell you that.
Thanks again, Bob, for your thoughtful reply. Going with a hematologist sounds appropriate. Oh boy. Finding an independent onco doc sounds like looking for a needle in a hay stack. I'd settle for any specialist who'd write a scrip for DES when I become refractory. My primary doctor practices integrative medicine and I'll ask if he'd write me a scrip for DES. He was willing to prescribe testosterone, but I'm totally conflicted about using it, especially since my PSA is climbing rapidly, which is why I'm on a second cycle of Firmagon. My primary has OK'd my taking DHEA and Boron, which are precursors to Testosterone. My urologist reluctantly said OK to taking Avodart since, he says, it is not proven. I see that New Chapter, which puts out Zyflamend, now has a formula which they say is comparable to a 5-alfa reductase inhibitor which is supposed to prevent testosterone from converting to the more active DHT.
BTW It's great that your choice of treatment has served you well for so long.
I have previously mentioned that when I asked my urologist what he has in his bag of tricks after I become hormone refractory he said we can do things. So then he suggested I see a radiologist and I said that doesn't appeal to me, i.e., the one with 40 treatments.
I just saw my primary doctor who practices integrative medicine. I told him what my uro doc said and without hesitation he said you don't want to do that. I asked he could, if the time came, for instance, prescribe DES or Ketoconazole. He said yes. Years ago I've had many infusions of Vit. C, which didn't 'cure'
me of cancer. I've also have had a long course of chelation, which didn't 'cure' me of heart disease. Both sets of infusions caused my veins to collapse so that I had to give them up. I wondered if I would be able ever again withstand a series of infusions (taxotere?). So he looked at my arms and indicated that there are veins that could be used if need be. So, for now, things are looking a bit rosier.
