I went to my primary care physician in July 2006 with fever and chills thinking I had the flu or a virus. When the doctor found no evidence of flu, he did a DRE and found enlargement. PSA test showed 18.7 ng/ml. So he treated me for prostatitis. After taking antibiotics for 3 weeks, PSA had come down to 15 ng/ml. Scheduled a biopsy. Biopsy came back Gleason 9 in all samples. Urologist said stage was T2C and recommended surgery and said that nerve sparing surgery was not an option. CAT scan and bone scan came back negative.
I got 2nd opinions: 1) from a radiologist, who thought the stage should be T3; 2)from a John's Hopkins urologist, who agree with T3 stage diagnosis, and recommended hormone blockade and external radiation; 3) from a another local medical university urologist who agreed with the T3 staging and recommended a rectal MRI. The MRI clearly showed most of prostate to be tumorous, as well as tumorous growths in the nerve bundles outside the prostate and in the seminal vesicles.
On October 13, 2006, I started hormone blockade with a 3 month Lupron shot and daily Casodex pills. On December 4, I started daily radiation treatments. PSA was now down to 0.85. On December 29 finished my 18th radiation dose. First 25 radiation treatments are broad pelvic area to try to insure killing any microscopic metastatic cells in the pelvic area before they spread. The trouble with this treatment approach is that it is irritating both my bladder and my rectum. Urinary frequency is approximately 1/hour. Irritated bowels means multiple BMs per day which are very hard on my hemorrhoids -- very bloody and painful. Sure will be glad to get the next 7 radiation treatments behind me. Radiation treatment then switches to targeting just the prostate and seminal vesicles for final 15 treatments.
Am supposed to stay on hormone blockade for 2 years. I know that's going to be tough -- I'm having all the side effects: impotence, hot flashes, night sweats, fatigue, some changes in mood, etc. Will update later.
John is still on Lupron and Casodex and his PSA is down to 0.2 ng/ml.
I'm doing well! I just got off the Lupron and Casodex after one year. My PSA is at .02 ng/ml, so the cancer is definitely in remission right now. So now the real test is to see how long the cancer stays in remission. (A table I found on-line from Memorial Sloan Kettering indicated I have a 40% chance of still being in remission at the 10 year point.)
The hormone treatment was a bit of a drag, but I adapted to it. I did not miss any work all the way through hormone treatment and radiation treatment. I went through all the classic hormone blockade symptoms:
* Lethargy, i.e. mild loss of physical energy (I didn't feel like running or exercising, and I lost leg strength, i.e. I had trouble getting up from a deep knee bend.) No loss in mental energy though, so I kept up my self-imposed 60 hour work weeks all the way through. No loss of appetite, so with no exercise, I gained 25 pounds.
* Some problems with night sweats and hot flashes. Tried some prescription medication, but didn't like the side effects - made me a little more drowsy and lethargic.
* Loss of sexual drive and function
* Some strange tingling in my legs and mild neuropathy in my feet. (Doctors didn't want to believe this was a side effect of Lupron or Casodex, but after getting off the medications, this symptom has already gone away.)
I've been off the hormone blockade for two weeks now, and already my physical energy seems to be up a notch - I'm hoping for a lot more. (I want to begin running again.) The doc says it may take 3+ months for the effects of hormone blockade to completely wear off. And, there's always the chance that sexual function doesn't return - so that's a worry. (However, its always hard to separate the possible causality of the radiation versus the hormone blockade on continued loss of sexual function.)
I would make the same treatment decision again. A key decision maker for me was that the cancer was already outside the prostate, i.e. in the nerve bundles and seminal vesicles and possibly farther. How did I know that? From a rectal MRI of the pelvic area. Not the most pleasant experience! - but the pictures were absolutely clear and conclusive - not like the CAT scan which can show big cancer in lymph nodes and other organs, but is much less precise than the MRI. Before I had the MRI, the doctors were not sure I was stage 2B or 3. The MRI clearly showed stage 3. For stage 3, both my urologist at UNM CRTC and a urologist at John's Hopkins strongly recommended hormone therapy plus radiation. (The fact that these expert surgeons were not recommending surgery really convinced me.).
February 2009: It's been 15 months since the completion of the hormone blockade treatment, so have been watching the PSA and hoping to stay in remission as long as possible. PSA hit a low of .02 and then drifted up steadily to .13 last November. I was disheartened and my doc thought the cancer was probably growing again.
I figured I was destined to go back on the hormone treatments. But not so fast! The doc ordered Bone Scan and CAT scan. They both came back negative. Two months later the PSA was .12, the first checkup where the PSA did not increase.
So we decided to wait another 3 months and see what the PSA does.
In response to a reminder, John indicated his PSA was 0.14 but made no other comment.
I am still in remission and feeling good. My PSA has remained below 0.10. I have gotten back into decent physical shape by running and exercising and eating healthy -- lost 40 pounds and am competitive in 5K races in my age group.
I feel the best I have in a decade.
Still in remission. Things are going well. I'm healthy and still running regularly and participating in 5K races.
Annual blood test and check in with urologist shows only very modest (statistically insignificant) increase in PSA. No need to do anything different.
I have been blessed with continued remission. It has now been 9 years since diagnosis and 7.5 years since treatment completion.
In February 2016 PSA was up slightly to .2, so my doctor recommended a rectal MRI, full body MRI and PET/CT scan. Scans came back suspicious of cancer in my (previously radiated 10 yrs ago) prostate bed, and a small possible metastasis on 2nd rib (down from top). Another more focused MRI of the rib confirmed the metastasis. In May 2016, my PSA was .46 and Dr. Arap recommended going on ADT. Before doing that I talked to Dr. Schroeder, radiation oncologist, and he recommended I view a video of a Presentation on Oligometastatic PC given by Dr. Kwon of the Mayo Clinic. That video piqued my interest in seeing Dr. Kwon and getting a Choline C-11 PET/CT scan with its better sensitivity. In August 2016, after a consult at the Mayo with Dr. Kwon, PSA was 1.0 -- had another round of scans that confirmed the single met in the rib and significant cancer in the prostate. On second visit to the Mayo, I had a targeted biopsy of the prostate which showed Gleason 9 cancer in the prostate. I had cryo-ablation surgery on the rib, to get rid of that met. Now we are in a 3 month "hold" waiting to see what the PSA does and will do the Choline c-11 PET/CT scan again to verify no new mets. If so, will consider salvage radical prostatectomy to get rid of the tumors in the prostate bed.
in November 2016, in consultation with Dr. Kwon and Dr. Karnes at the Mayo in Rochester, MN I made the decision to have a salvage prostatectomy. I went this direction because I am still relatively young (62 at the time), physically active, and didn't want to deal with going on ADT and the lethargy side effects and foot neuropathy side effect (that I experienced 10 years prior) for the rest of my life. Dr. Karnes specializes in salvage prostatectomy and he and Dr. Kwon felt that I had some chance for cure, or at least lengthy remission by going this direction. (I had already had my rib metastases removed via cryogenic surgery in August 2016 and PSA had dropped to .37 by November 2016. )
Dr. Karnes performed the salvage prostatectomy plus removed 11 pelvic lymph nodes in January 2017 at the Mayo. The tissue pathology reconfirmed the Gleason 9 cancer in the prostate bed (which had been radiated 10 years prior), but no positive margins and no cancer in the lymph nodes.
Even though the surgery went well, 5 days later I was readmitted to the Mayo hospital ICU with a terrible infection throughout my pelvis and bladder and bowels. After getting that under control with massive antibiotics, I was very slow to heal and had to stay in Rochester for another 6 weeks before getting the catheter out. I finally was able to make the flight home at the 7 week mark.
At the 3 month mark, my PSA was undetectable, and the Choline c11 PET scan showed no cancer -- yay!!! But my side effects are significant: slow to heal and very sore where the urethra was reconnected to the bladder neck - hard to sit without discomfort; incontinent and developed external staff infection in the groin area which was mitigated by another round of antibiotics; and complete ED. I am able to walk, but tire quickly. But I'm getting a little stronger each week. Hope to get continence back sometime in the future!! Will monitor PSA regularly and go back to Dr Kwon at the Mayo for another PET scan and consult in 6 months.
John's e-mail address is: email@example.com