In the fall of 2009 my PSA jumped from about 2 where it had been for a long time, to about 7. Retest showed it at 6. Because DRE (Digital Rectal Examination) had shown some irregularity for some time, my urologist strongly urged getting a biopsy. I delayed doing this because I was going to have ankle replacement surgery, and indeed had this surgery in early February 2010. I had the biopsy in late April 2010 and got the result on May 3: 7 of the 14 samples came back positive for cancer, all were on the left side, Gleason score was 8 (4+4) and the pathologist said it was borderline 9. One or two of the samples showed a tumor of greater than 1 cm. Scary time for me, I immediately educated myself, mostly by reading the Patrick Walsh (Johns Hopkins) book: Guide to Surviving Prostate Cancer. Excellent book.
Meanwhile I had a bone scan and a pelvic CT scan, and both, thank goodness, did not show any obvious metastasis. The urologist put me on Bicalutamide, followed a week later by a three month injection of Zoladex into the fat of the stomach area. He said that whatever therapy I later chose, this ADT (Androgen Deprivation Therapy) would help by greatly cutting down my testosterone, thus stymieing the cancer for a while, and reducing the size of the prostate. Both he and the radiation oncologist recommended EBRT (External Beam Radiation Treatment), possibly to be followed by Brachytherapy - implant of radioactive seeds. They said that it was very likely that the cancer had escaped the capsule of my prostate, and therefore even with a prostatectomy I would need further treatment. This coincided with what I had learned from my quick education, and I agreed with their recommendation.
I got a second opinion from somebody at Stanford Medical Center, and he wanted to remove the prostate with open surgery, where he said he could check the surrounding tissue. I did not like it that I now had conflicting recommendations - it was unsettling. When the urologist and radiation oncologist learned of the Stanford recommendation they were quite upset. And in fact the oncologist called the Stanford guy, explained what the treatment was to be, and the Stanford guy recanted, and called me to say so - which I liked. So I now was comfortable with the recommendation of ADT and EBRT.
The ADT had already begun, in mid-May 2010, and I stayed on the Bicalutamide for six months, and got another three month Zoladex injection in August 2010. So both drugs were good until mid-November 2010. My EBRT, which was also image guided and intensity modulated, was 25 sessions, lasting 5 weeks, and it began mid-August 2010. The EBRT was tolerable enough, although toward the end I noticed increased frequency of night-time urination, and needed to take naps several times a week. It terminated mid-September 2010. The radiation oncologist said that it delivered 45 gray's worth of radiation to the prostate and surrounding tissue. After that, I was deemed suitable for Brachytherapy and this was scheduled for October 14 2010.
In fact the ADT had reduced my prostate from about 53 cc to about 31 cc, as determined by a "volume study" where they mapped out the prostate so they could design the Brachytherapy.
I was worried that the Brachytherapy would make me unable to pee. Before the procedure, blood work showed fairly serious anemia, which helped explain the lack of energy and stamina I had been experienced. But the anemia did not stop the Brachytherapy. Part of the procedure was the installation of a catheter, which helped me get through the first 24 hours. After that I could indeed pee, though I had some burning at first, and even with the drug Tamsulosin (Flomax) I had to get up five times at night the first few days.
The active part of the ADT ended in mid November 2010. My urologist said it would be months before the effects wore off. One of the immediate effects was that my replaced ankle stopped healing! The lack of testosterone meant no bone growth, and in fact according to the orthopedic surgeon, my ankle pain was due to "thinning" of the tibia.
So as of mid November I was done with therapies, left to recover from the therapies, mostly the ADT.
Update, January 20 2011. The ankle has improved, leading me to hope the testosterone is returning. And my energy and stamina has gotten better, again I hope an indication of returning testosterone. Blood work shows low testosterone, and "undetectable" PSA, but still some anemia. Overall I feel great and have begun a program at the gym to help maintain/regain strength and balance (an ankle issue).
I would like to detail my side effects from the therapies...
Radiation (EBRT and Brachy): nothing much, perhaps some increased urination frequency and the need to take Tamsulosin (Flomax). Also, bowel urgency (as in better get to a toilet fast)
ADT: Hot flashes (they continue even now but are less frequent), greatly increased sensitivity to cold (continues, and more annoying to me than the hot flashes), weight gain (15 lbs... overeating may have contributed to this), anemia (I attribute this to the ADT and have seen it listed as a possible side effect), breast enlargement (not really significant), lack of bone growth (shows in ankle recovery), lack of muscle growth (I can tell this at the gym), loss of most body hair (I used to have a fair amount, and now it's almost none. Not a big worry, just an indication that things are not normal), total loss of libido, erectile dysfunction (I think, but hard to tell with no libido).
I am hoping the testosterone will soon return to acceptable levels... and the resultant side effects will diminish. And of course I am hoping that the cancer is gone.
Please feel free to contact me regarding any of this.
Long time since I updated. In Oct 2011 I stopped ADT. with negligible PSA. tested PSA every 6 months, it gradually rose- .6, 1.1, 1.9, etc. up to 3.5 in may 2004. In Nov 2014 it spiked to 18. DRE showed a soft, small and smooth prostate (probably dead). Prostate biopsy showed no cancer. Body scans showed no obvious place for metastasis. Anyhow I went back on ADT for a year, which immediately drives the PSA down near 0. So in Nov 2015 it was near 0 and I went off ADT. The idea of the Intermittent ADT is to give the body a chance to recover - bone and muscle growth, body hair etc. Which it did, except ED never fully recovered. Libido recovered somewhat. Testing every few months, it gradually rose again from 0.1 to about 4 in Aug 2017, and then in Nov 2017 it again spiked up to 20. So back on the ADT, which quickly brought PSA back to 0.12. So in Jun 2018 I went off the ADT expecting PSA to go down below 1 and stay there for a year or more. Well to my surprise and that of my urologist, the next test (Oct 2018) got a 7.03. So (hope springs eternal), hoping that that was a fluke. I will be retested this coming week (about 10/29/18) and we will take it from there.
In summary, for the last 7 years I have been on and off ADT. I have been fully active except on the sex front. I play a lot of racquet sports and have not had to take a break. The ADT does not tire me much but it does kill the libido. Actually, I must say that I have never felt any effects from the cancer itself - only from the treatments thereof. Right now, at age almost 79, I feel strong and fit and today I played two hours of tennis. Had it not been for PSA testing and biopsy results I would not have known anything was wrong.
That said, the current and unexpected 7.03 PSA has me a little concerned. I'll update again in a few days.
In Oct 2018 I had a PSA spike and was about to get a retest. The retest showed continuing high PSA, somewhere in the teens. My doc ordered an Axumin Pet Scan in Nov 2018, and at the same time put me back on Lupron (to reduce testosterone). The scan showed several areas of metastasis to bone - mostly on the pelvis, also some vertebrae and a couple of places on ribs. They were relatively small metastases. So it was decision time for me.
I interviewed an oncologist in Dec 2018, and also (from a friend) heard some anecdotal accounts from people who had cured their prostate cancer, even metastasized cancer, by using cannabis- the psychoactive THZ type of cannabis. So I decided to try this in Jan 2019. I gradually built up over a couple of months to a fairly heavy dose (ingesting it, not smoking it). I hated the cannabis, it made me stupid, and made me not want to eat or drink. In March 2019, I had a health crisis. I went to the ER and they thought I had had a stroke, but No it was just severe dehydration. After a couple of days I came home, stopped the cannabis forever, and in April 2019 decided to go on the Standard Treatment for metastasized-to-bone prostate cancer.
The new treatment is a daily 1 gram dose of Zytiga (generic is Abiraterone) supplemented by a small amount of Prednisone to reduce side effects. The Zytiga kills the testosterone completely and has driven the PSA down to 0.6. Scans in Jul 2019 showed that the metastasis has stabilized. They added infusions of Zometa (every three months) to my treatment regimen. This changes the way bones heal, I believe, and slows the metastases. I have never felt any pain or discomfort from the metastases.
Right now (Dec 2019) I am 80 years old, recovering from a hip replacement, and recovering very well. The hip replacement has nothing to do with the prostate cancer, and I expect to be able to resume ping pong and tennis in a few months, perhaps at a lower level. I am told that the Standard Treatment regimen I am on will not be effective forever; in a year or three the metastases will resume and I will be looking for some new treatment to extend my hopefully still active life.
George's e-mail address is: slickeau AT yahoo.com (replace "AT" with "@")