I have just found this forum, wish I had thought to look for such a community before commencing a treatment.
My family Dr. ordered a PSA and DRE for me two years ago as part of a routine physical. I was 48 and in good health, 72", 200 lbs, fit and active. The DRE was unremarkable but the PSA returned over 8.0. He administered a course of antibiotics and retested about a month later and there was only a slight decline in PSA so he referred me to an Urologist.
The Urologist performed another DRE and noted a slight abnormality and ordered an 8 core biopsy. The biopsy disclosed 15% cancerous tisssue in one of the eight cores, gleason 6.
By this time I had been completely through the Walsh book and knew that I wanted a radical, this is also what the Dr. suggested. I had a PET scan and an abdominal CT both negative. I scheduled for a robotic radical for July 30.
The robotic was performed as scheduled the night of the surgery my pain was not managed well and I was unable to sleep so I was kept a second day and night. The second night went much better and on the third morning I was able to get up move about and shower. I was discharged that afternoon.
The foley was removed 10 days post surgery.
The first post surg PSA was taken about 45 days post surgery and returned 1.8. The Dr. advised me that this meant the cancer had escaped the confines of the prostate and that he recommended IMRT and hormone ablation. He administered a 30 day dose of Lupron that day.
I saw the radiation oncologist that week, he also recommended the IMRT and ordered a prostascint scan to rule out metastasis. The prostascint returned negative for distant disease and so we scheduled IMRT to commence last week in October.
30 days after the first Lupron injection I was given another, this one a 90 day dose. The Lupron was awful, it gave me hot flashes, reduced my energy level to almost nothing, caused me to gain wt., gave me insomnia, caused me to become alternatively morose and agressive, and interferred with my ability to comprehend.
The IMRT wasn't too bad until about week 5 at which point I had extreme urinary and fecal urgency, burning upon urination, inflamation and bleeding of hemroids, and blood in my stool, various meds were administered such as steriodal suppositories, creams and pain meds which helped with this, also an oral called peridium which helped with the urinary pain.
On 01/23/08 I experienced a total and sudden urinary obstruction, it turned out to be scar tissue caused by the radiation. I was seen in the emergency room where they tried IV morphine, lydocanine locally, IV demerol, and more IV morphine, they had a heart and resp monitor on me and kept telling me to concentrate on breathing. None of this relieved the pain and they were unable to place a catheter. I was taken to the operating room for an emergency cyctoscopy to relieve the obstruction, I spent that night in the hospital and was sent home late the following afternoon with my old friend foley. The cathedar was removed 10 days later.
My first post radiation PSA was taken in 04/08 and returned 1.0. The Dr. was not concerned and said it would likely decline. The next one was 07/08 and was 1.4. At this point my Urologist referred me to MUSC (med university of SC)
The MUSC Dr. did a DRE and ordered a prostascint and sent everything to their tumor board for evaluation.
I also made an appointment with Duke as my family Dr. advised that the situation was too serious to rely on only one treatment recommendation.
The Dr. at Duke reviewed my records and advised it was her opinon that I had a case with micro metastasis and that she would recommend hormone ablation at such time as the rise in PSA warranted. She advised no further diagnostics and was convinced of her prognosis.
Shortly after seeing the Dr. at Duke I recieved the results of the tumor board at MUSC. They advised me that the original surgeon had left a significant portion of my prostate and that this could be the source of the PSA. They further advised that surgery was no longer a viable option due to the IMRT, and that if this portion of prostate should need to be removed I should consider cryoablation but that I should be advised that even the cryo could have profound ill side effects because of my status post IMRT.
By this time I had been doing more research into other forms of treatment and was seen by another Dr. at Duke who advised a clinical trial if my PSA continued to rise. This Dr. concurred with the other Dr. at Duke that my cancer at this point was incurable and that we should pay no attention to the portion of prostate remaining. By now it is late September of 08 and the most recent PSA is 1.6.
So I begin doing research into clinical trials. of the hundreds going on in the area of prostate cancer I found only about six for which I met enlistment criterea as most required patients with hormone refractive or metastatic progression. I do find reference to a procedure called HIFU (high intensity focused ultrasound) a procedure approved in many overseas countries as a primary procedure but not yet approved here. By now it is early November and my latest PSA is 1.7.
I find a Dr. in Florida who practices conventional urology and also specializes in the HIFU. I forward records to him and ask given the negative whole body scans is it possible that the remaining prostate is the source of the PSA. He responds that he has seen such instances and that he advises a saturation biopsy to determine the nature of the remaining tissue. By now it is mid December and my most recent PSA has remained at 1.7.
On 12/21 I am seen in the Dr.s office for a DRE and exam he also takes urine post the DRE for a test little used here called PCA3 a much better gauge of local prostate cancer than PSA.
on 12/24 the Dr. performs a saturation biopsy taking 36 cores, a week or so later I have the results 24 cores showing normal prostate tissue capable of expressing PSA and a return of negative on the PCA3. All of this leads this Dr. to conclude that while I remain at high risk for recurrence he does not believe there is an ongoing cancerous process. We will continue to monitor PSA every 6 months, if he is right it should be stabilizing where it is which roughly equates to the 10 to 17 grams of prostate I still have.
I have forwarded the whole to a good medical malpractice firm. I believe that the Dr. knew he botched the surgery, afterall he delivered only 7 grams of tissue to the lab when the prelim reports on me stated I had a mildly enlarged prostate, should have been around 20 grams or more. I think he sent me to radiation believeing that would shut down the production of PSA and I would have never been the wiser. I only learned all of these facts after the radiation failed to control the PSA.
I continue to have urinary urgency which requires the use of pads, on usually gets me through the day. It was supposed to be a nerve sparing procedure but I cannot have either a spontaneous erection or one with the use of oral agents so I am left to believe the nerves where either severed or severely damaged. Tri-mix caused accceptable but very painful erections so I am using bi-mix with reasonably good results except now am beginning to experience curvature.
I thought I had researched and understood a lot before going forward with treatment, the big mistake I made was in trusting my care to the Urologist after it was clear the surgery had not effected a cure. Had I started looking at all of the medical records before beginning the IMRT I think I would have uncovered the failed surgery and would have taken a substantially different route of treatment from there.
Diagnosed @ 48yo 04/07
focal low volume tumor gleason 6
Persistance of PSA
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney