Post Edited (nodaker) : 12/13/2008 9:35:12 AM (GMT-7)
Thank you for your very thoughtful and thorough reply. I apologize for the confusion regarding the % sign. I did mean to use it with only the free PSA numbers. I tried to edit my post to correct it but I can't figure out how to edit. Maybe it's not an option in this forum?
To clarify: The free (unbound) PSA values have been: 17%, 12%, 10%, 7%, and 9%. I think there was another one in there but it was less than 12%. What concerns us about these pretty dismal numbers is what Dr. Walsh says about them. To quote from his book, pg. 150 "if the free PSA is less than 15 percent, it's more likely that most, if not all, of that PSA is coming from cancer, that the cancer is significant in size, and that it will prove aggressive." I had been urging my husband to get a second opinion at Mayo and he had been semi-resisting until he read that.
We can't give enough accolades and praise for our experience at the Mayo Clinic. Truly, a top notch medical facility and we are thankful that we now will have a relationship with the urology department. My husband also has a good rapport with his urologist in our town and actually the clinic here follows the Mayo protocol. His doctor here had no problems referring him for a second opinion and all records and pathology slides were sent to Mayo. We are fortunate and we know it when it comes to the cooperation of care.
Regarding the capsaicin: the thread in this forum was from a gentleman down in Florida who claims his prostate cancer was put on hold so to speak by the hot pepper supplements. I also believe there is an urologist on this forum who was giving it a test run (to see how he tolerated it, etc. possibly to recommend in his practice). I will try to hunt the thread down. My husband and I have been doing some research also, and we even asked the doctor at Mayo. She said there is some promising research with capsaicin and felt it would do no harm. I also know about curcumin. We don't take that as a supplement, but I use a LOT of tumeric in my cooking -- we eat a lot of veggie curries. :) And, we also take Vit. D3 (1000mg/day) in the winter only. In the summer we let the sun do its work.
I understand completely what you say about men and the percentage that have prostate cancer. I guess neither my husband nor I will ever feel like he doesn't have it somewhere in there as long as his PSA and free PSA values continue to be less than stellar. It's just a bit unnerving to think that biopsy after biopsy may be what his future holds. We certainly are going to put this on the back burner and not stress about it for six months since no one is going to do anything until then anyway. I doubt we are ever going to get cavalier about it though!
LOL! re: 'end fire probe'. guess that does sound daunting. :) My husband said he didn't feel a thing with the first biopsy -- guess he got numbed up pretty well. He said the 'noise' caught him off guard but that was it. End fire probe is a whole different story apparently.
Post Edited (nodaker) : 12/13/2008 9:37:10 AM (GMT-7)
nodaker says: P.S. Selmer, how do you edit your posts?
In case Selmer has the weekend off, I'll answer. See the little pencil icon on the right side of each of our posts? Click it and it will open back up into the posting screen, there you can make edits. Just click Submit again...
Post Edited (nodaker) : 12/13/2008 3:07:02 PM (GMT-7)
I'm in a somewhat similar situation, but my PSA level has not been quite as high as your husbands. I'm 48, good health. As you see from my signature below, my PSA has been from 4.8 to 5.4 recently, and free PSA has been 7% to 8%. I read Dr. Walsh's book after my PSA test in July, and it scared the crap out of me. Particularly where he referenced the Baltimore Study on Aging, and taking a number of men who had developed agressive PCa and going back and looking at their stored blood samples from before they were diagnosed with PCa. In some cases these samples went back a decade before they were diagnosed, and everyone of those men had low free PSA long before they were diagnosed. So they say there's a 56% chance of having PCa with low free PSA, but I have not found any mention of the other 44% and what could cause low free PSA besides cancer. I posted here a few weeks ago, hoping someone could shed some light on it, got about the same response you did.
After my biopsy in October, the urologist called to tell me there was no sign of cancer, my prostate was enlarged, repeat the DRE and PSA test in 6 months and go from there. I have no symptoms of BPH. My GP did not want to wait 6 months (neither did I), repeated PSA test after 3 months and PSA dropped from 5.4 to 5.2, free PSa stayed at 7%. I have done a lot of searching on the internet for info on low free PSA, there is not a lot of info there. Could be there is cancer present, but it is so small or in such an awkward spot that a biopsy does not catch it. Could be free PSA is low for an unknown reason.
I do know there is work being done on new versions of the PSA test- they have found that free PSA is made up of several things, and they are looking at the individual components of free PSA to see if one of these is a better marker for PCa. Of course this is down the road a ways.
I found some interesting info about free PSA on the Fred Hutch Cancer Research Center (Seattle) web site, and Dr. Catalona's web site. I'll put a couple links below. If you do a search for "free PSA" on these sites you will find more info.
Like you, I'm trying not to dwell on this. Maybe its nothing. But the look on my GPs face when she gave me the first PSA results back in July, she was worked up and you would have thought she was telling me I had cancer right then. So I'll see the urologist again in March, repeat the PSA test before then, and unless there is a significant drop in the PSA and rise in free PSA, I'll expect another biopsy. This time I will pick his brain for more info on low free PSA. I would be very interested how things turn out for you guys, and if you come across any info on free PSA. Please post again. My e-mail address is available in my profile if you want to drop me line.
Post Edited (nodaker) : 12/14/2008 11:09:40 AM (GMT-7)
Post Edited (Roy5085) : 4/14/2017 9:50:40 AM (GMT-6)