IADT3since2000
11-20-2007, 07:52 PM
Having recently joined this board, I thought the story of my challenging case would interest some participants, so here goes.
Most of us here are fortunate to have or care about someone with prostate cancer that either looks curable or that probably has already been cured. But a few of us were stunned to find out from the get-go that we had challenging cases, and I'm in that group. My case is considered incurable with current technology, but it also may hopefully be in the chronic category rather than the ultimately lethal category. I'm doing very well, and my case illustrates an option that many patients and even most doctors do not seem to know about, either as a fall-back or primary treatment.
My story - Having a long delayed routine physical in December 1999 at age 56, I had to insist on having a PSA test (my first one ever), which my physician thought was unnecessary. A DRE? - he did not mention it, and I didn't know such an exam even existed. Three days later he was embarassed and I was stunned when the PSA result came back: 113.6, including a scrawled note from the pathologist: "Get appointment ASAP." :confused: Back then I thought the highest a PSA score could go was 10!
A urologist did a DRE the next morning and said my prostate was mildly enlarged and uniformly "rock hard." A biopsy was quickly scheduled, and the results were consistent with the PSA and DRE: Gleason of 4+3=7 confirmed by an expert, all cores positive, most 100% cancer, with perineural invasion. :( Fortunately, a CT and a bone scan were both negative. :) Widespread metastasis was considered likely though, despite the scans and the fact that I was feeling fine and was regularly exercising vigorously. I had been unaware of symptoms, but came to realize I had experienced regular nocturia and very occasional extraordinary urgency.
Two respected urologists, whom I still respect, each at an institution highly regarded for its cancer work, gave me "second opinions" (actually, fourth and fifth opinions by this time) around the start of 2000. I asked for a prognosis, fearing the worst, and each reluctantly gave me the same forecast: three good years followed by two declining years. :( Frankly, that sounded pretty reassuring to me and my wife at the time as we had feared a far shorter estimate. :) They both then knew about my scans, but they also knew that bone scans only pick up prostate cancer that involves 10% or more of bone and that the CT scan only catches fairly large tumors. The second doc ordered a ProstaScint scan just to keep the door open for radiation in case the scan would prove basically negative, which was most unlikely. He gave me an overview of chemotherapy possibilities including some chemo clinical trials, trying to encourage me with a 40% chance of reducing my PSA by 50%.
But astonishing us all, the ProstaScint did turn out to be essentially negative! :D That was my first huge break: I had no detectable metastases, even after probing with the sensitive ProstaScint scan. The other reason the two doctors were so wrong in my prognosis was that they did not understand the effectiveness of modern hormonal blockade. I've since formed a firm impression that they shared this lack of understanding with most of their urology colleagues, a problem that continues to this day for too many physicians.
However, I ended up with blockade only after two other tries. First, not knowing much about prostate cancer but thinking I knew enough after several weeks, I called an institution known throughout the world for its expertise in PC surgery to schedule an RP. A triage nurse spent a minute with me to get my key numbers, put me on hold, and then bluntly told me I was not a surgery candidate. :( Feeling like "R E J E C T" was branded on my forehead, I consulted a doctor there who offered chemotherapy but gave me an outside shot at radiation if my ProstaScint was favorable. When it was favorable, I consulted with one of their radiation specialists. He said my chances of cure were well under 50%, but he was willing if I was. I had two followup consultations and was ready for the tatooing session in May 2000, in prepartion for external beam radiation. To further shrink the prostate, the radiation doctor had added Casodex to the Lupron I had been on since two weeks after diagnosis.
But a week before tatooing I learned about triple hormonal blockade. I learned the prospects were excellent for dropping my PSA to the low digits, and I might be able to go on intermittent blockade if my PSA dropped far enough and stabilized. I learned I would probably find the side-effects tolerable. I also put some hope in support from the alternative medicine side, having been convinced by still preliminary but accumulating, favorable evidence that nutrition, diet, selected supplements, exercise and stress reduction would help me win my war with cancer.
Well, I was on blockade for 31 months, including the last 22 months on triple blockade after adding Proscar in September, with Fosamax in support to preserve bone density while on blockade. My PSA dropped more slowly than it does typically, probably due to my adverse case characteristics, but it did fall below .05, my goal, and it stayed there for a year, eventually dropping to <.01. :) I went "off-therapy" for the next thirty-four months, virtually recovering from all side effects after three to six months and feeling great. I was on low-dose thalidomide (with vitamin B6) for the last six months to extend my off-therapy period. A resuming rise in PSA triggered the next period of full blockade, and I stayed on for nineteen months, again reaching a low point of <.01. Benefiting from recent knowledge about the duration of full blockade, I then went off full therapy and am now at nearly the full year point off therapy and coasting, having again recovered from virtually all side effects in the three to six month timeframe. :cool:
During the last eight years I've become an avid reader of prostate cancer newsletters, books, internet exchanges, national PC conferences, FDA hearings on PC, and cancer research conferences. I am active in support groups and advocacy/education organizations.
I'm feeling fine, and I hope to beat this thing. My wife and I are enjoying life. I'm thankful to be here at all and keenly appreciative of being alive.
May we all rise above our physical and emotional circumstances and celebrate a joyous Thanksgiving! :angel:
Jim
Most of us here are fortunate to have or care about someone with prostate cancer that either looks curable or that probably has already been cured. But a few of us were stunned to find out from the get-go that we had challenging cases, and I'm in that group. My case is considered incurable with current technology, but it also may hopefully be in the chronic category rather than the ultimately lethal category. I'm doing very well, and my case illustrates an option that many patients and even most doctors do not seem to know about, either as a fall-back or primary treatment.
My story - Having a long delayed routine physical in December 1999 at age 56, I had to insist on having a PSA test (my first one ever), which my physician thought was unnecessary. A DRE? - he did not mention it, and I didn't know such an exam even existed. Three days later he was embarassed and I was stunned when the PSA result came back: 113.6, including a scrawled note from the pathologist: "Get appointment ASAP." :confused: Back then I thought the highest a PSA score could go was 10!
A urologist did a DRE the next morning and said my prostate was mildly enlarged and uniformly "rock hard." A biopsy was quickly scheduled, and the results were consistent with the PSA and DRE: Gleason of 4+3=7 confirmed by an expert, all cores positive, most 100% cancer, with perineural invasion. :( Fortunately, a CT and a bone scan were both negative. :) Widespread metastasis was considered likely though, despite the scans and the fact that I was feeling fine and was regularly exercising vigorously. I had been unaware of symptoms, but came to realize I had experienced regular nocturia and very occasional extraordinary urgency.
Two respected urologists, whom I still respect, each at an institution highly regarded for its cancer work, gave me "second opinions" (actually, fourth and fifth opinions by this time) around the start of 2000. I asked for a prognosis, fearing the worst, and each reluctantly gave me the same forecast: three good years followed by two declining years. :( Frankly, that sounded pretty reassuring to me and my wife at the time as we had feared a far shorter estimate. :) They both then knew about my scans, but they also knew that bone scans only pick up prostate cancer that involves 10% or more of bone and that the CT scan only catches fairly large tumors. The second doc ordered a ProstaScint scan just to keep the door open for radiation in case the scan would prove basically negative, which was most unlikely. He gave me an overview of chemotherapy possibilities including some chemo clinical trials, trying to encourage me with a 40% chance of reducing my PSA by 50%.
But astonishing us all, the ProstaScint did turn out to be essentially negative! :D That was my first huge break: I had no detectable metastases, even after probing with the sensitive ProstaScint scan. The other reason the two doctors were so wrong in my prognosis was that they did not understand the effectiveness of modern hormonal blockade. I've since formed a firm impression that they shared this lack of understanding with most of their urology colleagues, a problem that continues to this day for too many physicians.
However, I ended up with blockade only after two other tries. First, not knowing much about prostate cancer but thinking I knew enough after several weeks, I called an institution known throughout the world for its expertise in PC surgery to schedule an RP. A triage nurse spent a minute with me to get my key numbers, put me on hold, and then bluntly told me I was not a surgery candidate. :( Feeling like "R E J E C T" was branded on my forehead, I consulted a doctor there who offered chemotherapy but gave me an outside shot at radiation if my ProstaScint was favorable. When it was favorable, I consulted with one of their radiation specialists. He said my chances of cure were well under 50%, but he was willing if I was. I had two followup consultations and was ready for the tatooing session in May 2000, in prepartion for external beam radiation. To further shrink the prostate, the radiation doctor had added Casodex to the Lupron I had been on since two weeks after diagnosis.
But a week before tatooing I learned about triple hormonal blockade. I learned the prospects were excellent for dropping my PSA to the low digits, and I might be able to go on intermittent blockade if my PSA dropped far enough and stabilized. I learned I would probably find the side-effects tolerable. I also put some hope in support from the alternative medicine side, having been convinced by still preliminary but accumulating, favorable evidence that nutrition, diet, selected supplements, exercise and stress reduction would help me win my war with cancer.
Well, I was on blockade for 31 months, including the last 22 months on triple blockade after adding Proscar in September, with Fosamax in support to preserve bone density while on blockade. My PSA dropped more slowly than it does typically, probably due to my adverse case characteristics, but it did fall below .05, my goal, and it stayed there for a year, eventually dropping to <.01. :) I went "off-therapy" for the next thirty-four months, virtually recovering from all side effects after three to six months and feeling great. I was on low-dose thalidomide (with vitamin B6) for the last six months to extend my off-therapy period. A resuming rise in PSA triggered the next period of full blockade, and I stayed on for nineteen months, again reaching a low point of <.01. Benefiting from recent knowledge about the duration of full blockade, I then went off full therapy and am now at nearly the full year point off therapy and coasting, having again recovered from virtually all side effects in the three to six month timeframe. :cool:
During the last eight years I've become an avid reader of prostate cancer newsletters, books, internet exchanges, national PC conferences, FDA hearings on PC, and cancer research conferences. I am active in support groups and advocacy/education organizations.
I'm feeling fine, and I hope to beat this thing. My wife and I are enjoying life. I'm thankful to be here at all and keenly appreciative of being alive.
May we all rise above our physical and emotional circumstances and celebrate a joyous Thanksgiving! :angel:
Jim