15th November 2007
[QUOTE=Mr Herb;3135878]The urologist did the orchiectomy .... He said it was a less invasive surgery and was the "Gold Standard" to insure that the prostate would shrink basically away because of the removal of the main source of testosterone. There was no mention at that time of metastasis.
From what I understand, that surgery removed the possibility of hormone therapy as treatment.
Then, when the PSA became so high, or so we thought, actually it was only 31, we could not elect to have hormone therapy, and there was no longer any "target" for radiation, so that left only chemo.
Am I making any sense?
Hi Herb,
I hope you are still tuned in as I have just recently registered on this board and just came across your post. I have never had enrolled medical education, but I've had a challenging case, (e.g. a first ever PSA of 113, driving down to less than 0.01 at the end of my first round of intermittent triple hormonal blockade) and am now doing very well as a survivor of nearly eight years in the eleventh month of my second "off therapy" period. I've had to learn a lot about prostate cancer and treatments, particularly about hormonal blockade.
I'll be blunt up front: you need to find a doctor who is expert in hormonal blockade. From what you have described, it appears to me, though I am a non-medically trained layman, that your treatment management has been seriously flawed.
It's obvious your doctors have not done an adequate job of explaining things to you or referring you to excellent web, print and group resources that would have covered that. I suspect it is because their own knowledge is limited. I'll give them a little sympathy because it must be tough as a general urologist or general medical oncologist facing a multitude of diseases in children and adults, men and women, with different organs involved, and a multitude of cancers, at various stages, with a multitude of treatment and support approaches. That said, I have a lot more sympathy for us poor patients who suffer from a doctor who lacks the expertise we need.
At least your doctor mentioned removing the main source of testosterone, implying that there were other sources. Orchiectomy does that, but men still normally get about 5% of testosterone produced via the adrenal glands that are completely unaffected by an orchiectomy. Leaving the adrenals alone is probably sometimes okay, but many of us produce more than 5%, and in a small percent of men, the adrenals, sensing the shortfall in testosterone, ramp up their indirect production to 40% of normal! :( You can see how that would wreck an attempt at adequate hormonal blockade! That's one of the reasons it's important for a doctor to monitor testosterone to make sure it gets below 20. (Below 50 used to be the target level, but that's a heck of a lot of testosterone that can do harm, especially if converted into much more potent DHT.)
That means you could still aim for a good result with hormonal blockade by using Casodex or flutamide (or other less frequently used drugs) to block most of the testosterone that is left from linking up with the cancer cells. You can go further by getting a prescription for finasteride or alternately Avodart to prevent the conversion of almost all remaining testosterone to DHT.
Did the doctor have you tested for bone mineral density with a DEXA or qCT scan, and are you on a bisphosphonate drug to protect bone density since you now lack most of your testosterone? In my opinion, that should be standard practice as hormonal blockade otherwise decreases bone density in so many of us.
There is more you can do, but this is already a lot to take in.
Good luck,
Jim
From what I understand, that surgery removed the possibility of hormone therapy as treatment.
Then, when the PSA became so high, or so we thought, actually it was only 31, we could not elect to have hormone therapy, and there was no longer any "target" for radiation, so that left only chemo.
Am I making any sense?
Hi Herb,
I hope you are still tuned in as I have just recently registered on this board and just came across your post. I have never had enrolled medical education, but I've had a challenging case, (e.g. a first ever PSA of 113, driving down to less than 0.01 at the end of my first round of intermittent triple hormonal blockade) and am now doing very well as a survivor of nearly eight years in the eleventh month of my second "off therapy" period. I've had to learn a lot about prostate cancer and treatments, particularly about hormonal blockade.
I'll be blunt up front: you need to find a doctor who is expert in hormonal blockade. From what you have described, it appears to me, though I am a non-medically trained layman, that your treatment management has been seriously flawed.
It's obvious your doctors have not done an adequate job of explaining things to you or referring you to excellent web, print and group resources that would have covered that. I suspect it is because their own knowledge is limited. I'll give them a little sympathy because it must be tough as a general urologist or general medical oncologist facing a multitude of diseases in children and adults, men and women, with different organs involved, and a multitude of cancers, at various stages, with a multitude of treatment and support approaches. That said, I have a lot more sympathy for us poor patients who suffer from a doctor who lacks the expertise we need.
At least your doctor mentioned removing the main source of testosterone, implying that there were other sources. Orchiectomy does that, but men still normally get about 5% of testosterone produced via the adrenal glands that are completely unaffected by an orchiectomy. Leaving the adrenals alone is probably sometimes okay, but many of us produce more than 5%, and in a small percent of men, the adrenals, sensing the shortfall in testosterone, ramp up their indirect production to 40% of normal! :( You can see how that would wreck an attempt at adequate hormonal blockade! That's one of the reasons it's important for a doctor to monitor testosterone to make sure it gets below 20. (Below 50 used to be the target level, but that's a heck of a lot of testosterone that can do harm, especially if converted into much more potent DHT.)
That means you could still aim for a good result with hormonal blockade by using Casodex or flutamide (or other less frequently used drugs) to block most of the testosterone that is left from linking up with the cancer cells. You can go further by getting a prescription for finasteride or alternately Avodart to prevent the conversion of almost all remaining testosterone to DHT.
Did the doctor have you tested for bone mineral density with a DEXA or qCT scan, and are you on a bisphosphonate drug to protect bone density since you now lack most of your testosterone? In my opinion, that should be standard practice as hormonal blockade otherwise decreases bone density in so many of us.
There is more you can do, but this is already a lot to take in.
Good luck,
Jim