In April 1998 my PSA was 1.0 In the Fall I had knee replacement surgery that led to post catheterization prostatitis which was treated with various antibiotics in '98 & '99.
My PSA was 2.5 in August 1999. My PSA was 4 in June 2000. I went to a local Urologist that said my prostate was normal sized and told me to not worry because I was too young for prostate cancer. I insisted on an ultrasound which he later cancelled because it was inconvenient to his schedule.
From September 2001 to November 2001 my PSA went from 8.9 to 9.3. My ultrasound guided biopsy showed cancer in the right lobe but none in the left.
I weighed my options: I was the first in my family with PC, it was a rapid rising PSA, I was young, all factors in my research indicated my best option was RP (Surgery). I wished for nerve sparing surgery since there was no initial signs of cancer in my left lobe. I researched surgeons and elected to have RP at the Cleveland Clinic (Great doctor but bad hospital experience).
Based on initial biopsy the surgeon left the left nerve bundle. The post-operative histopathology report showed more cancer on the left than the right with some cancer cells in the fat around the left seminal vesicle. My side effects were minimal with occasional incontinence but retention of potency.
My PSA remained at 0 until June 2005 when it was 0.20. I elected to have EBRT (External Beam Radiation Treatment) in June 2006 which brought the PSA to 0 again. In June 2007, it recurred at 0.20 Then it became 0.30 in December 2007 and now is 0.60 (April 2008). I am now weighing my options.
Mostly I'm just watching and waiting.
My urologist/surgeon/oncologist at Cleveland Clinic wanted to see the doubling time. Well, it's doubled and no one knows yet what to do. I can begin hormonal treatment - ADT (Androgen Deprivation Therapy) but no one recommends chemotherapy. There is the suggestion of radiation again but I don't like the option relative to damage to other adjacent tissues. I think my PSA is about 1.20 now and was last run in April, I think.
I try not to think about it too much as it does no good to dwell on the cancer. There's too many other things to be appreciate than to dwell on the fact I have cancer and can't get much of an erection.
I'm continuing with no change to my diet or life style. I am about 70 pounds overweight and still work 45-50 hours a week.
I am very mildly incontinent. I can still experience an orgasm.
In May 2010 my PSA was 5.2 with a doubling expected based on history to occur every 6-7 months. My plan was to begin Androgen deprivation when my PSA got to 10. My next PSA was in November 2010 and the PSA had dropped to 4.1 so I felt a temporary reprieve.
I'll retest in May (it is March now) and it will probably be over 10 and I will begin the hormones. Stay tuned. Maybe the prostate cancer fairy has rescued me :-)
My PSA was 6.3 in May, 2011. It went up to 8.5 in August of 2011. It was 8.3 in December 2011. My plan was to do nothing until my PSA reached 10.0
At that time I'll resort to ADT, maybe. My oncologist at the Cleveland Clinic says that the average time for ADT to work is about 7.5 years. [It is important to understand that there is a wide range of periods for which ADT works. The median may well be 7.5 years, but there are examples beyond that.] Then you get hormone resistant adenocarcinoma.
With all the potential side effects of ADT, I may decide to do nothing until it mets. [Again it must be said that there is a wide range of reactions to ADT, some of which are of no concern to the man undergoing the therapy.].
My PSA is at 10.6. This represents a doubling of every 10 months. My doctors at Cleveland Clinic say to become worried about a PSADT of
I have postponed any further treatments as I am not too excited about ADT and the side effects. I know I risk metastasis but am almost willing to accept my fate rather than feminization and all the secondary risks along the way. I'm due to go to Cleveland Clinic to discuss this further with my Oncologist so there will be an update later.
I recently had my PSA checked and the result was getting high enough to get my attention. Cat scan/ body scan showed inguinal lymph node uptake and enlargement. Based on that I decided with my doctor's rec that I begin ADT. Casodex orally, daily, for a month then Lupron injections. I've had little if no side effects from the Casodex but I expect that all to change with the lupron.
Currently, I am on Casodex daily and goserelin implant every 3 mo. This was started @ January so am due for my next implant soon. My biggest problem has been the inability to sleep more than a few hours at a time. I'm 5 weeks removed from bilat knee replacement so that isn't helping my sleep habits either but that's less of a problem now. My Doc is for no break in the ADT but I'm interested in 3mo on and 3 mo off depending on PSA results.
I have locally metastatic advanced prostate cancer. I was on 4 months Casodex and had the dolorex implant. I elected to forego the dolorex implant (too many side effects) at my last visit but have maintained the Casodex. My doctor doesn't agree with my decision but is very understanding and accommodating as I think I am sometimes his worse nightmare client. I know just enough to be dangerous. At my doctors direction, we are monitoring my PSA. I would be unlikely to have a low testosterone level so I am not monitoring that at this time. Anyway, today's PSA is 0.0. At some point in the future I will get the implant when the PSA rises. My chances of cancer control is not as good with the single medication but my overall disposition is much better which counts for something. I am still working 3 twelve hour days a week. Knees are getting better and am getting stronger and thinner.
Oops! My implant is goserelin (Zolodex). Please excuse my previous entry.
I've been on Casodex only after beginning Casodex then an implant of goserelin since 12/13. The implant was not very enjoyable so my doctor allowed me to go off it and continue the Casodex 50mg daily only. While monitoring my PSA and the testosterone levels. So far the PSA has been zero even though my testosterone is 337 (241-827) on 2/19/15. On my last bone scan my diagnosis was changed to "locally metastatic" adenocarcinoma. So, things are better than expected since my doc said the Casodex alone would not hold the cancer in check. Best wishes to all.
Update: I decided to not receive the full compliment of ADT when I found the Goserelin injection to have too many side effects when combined with casodex oral. After I began the Casodex then received the goserelin, I was too miserable from the side effects. My oncologist agreed to try the Casodex alone and I've been fortunate to continue to have a PSA of zero. My values are checked every 6 months. The last PSA test was 12/2/15. My last testosterone was 337 (N=241-827) on 2/19/15. The reason I chose to receive only one of the two commonly administered ADT drug combos was from my research on YANA and other internet sources. I was also lucky to have an understanding oncologist at Cleveland Clinic that went along with my wishes. I still work part time but am now slowed down by sciatic nerve and back pain as well as the side effects of knee replacement that went bad. Looking forward to getting the knee problem resolved though. I've really not changed anything in my diet or daily routine. I've quit obsessing over my locally metastatic cancer and have pretty much put it in God's hands.
My PSA is till nonexistent and my treatment remains 50mg Casodex only. Again, this was against my oncologists rec as a monotherapy in his mind would not be adequate to keep my cancer under control. But, the side effects of Casodex plus the goserelin implant were so severe and because I read in these patients reports that some had good luck with Casodex only, I decided to take a chance and so far it has paid off. I could not have made that decision without access to these patient's histories. So, since my last post, I've had a knee replacement redo in Feb, 2016. But soon after, I developed some odd form of psoriatic arthritis and that is holding me back. But I still work 2-3 days a week. I now take methyltrexate every 7 days and 5 mg prednisone every 2-3 days. I am blessed to have a "quiescent" locally metastatic presence of adenocarcinoma and great doctors at the Cleveland Clinic.
Today I've decided to stop my one chemo agent, Casodex. I'm 70 and with all my other health issues, I don't believe my cancer will become a huge issue before I die of other things. So, I'm willing to lose the Casodex side effects in favor of some improved quality of life. Hopefully, the cancer will be slow growing. Overall, I've had a good run with only Casodex.
Well, I never stopped my treatment after all. I figured I was doing too well to change. Out of frustration from my other issues, I think I was striking out, venting, giving up because of all my problems. Anyway, about to get my PSA. Still on 50mg Casodex once daily.
I'm currently on 50 mg Casodex only. I'm due to get my PSA in @ 2 months. I try to run the test every 6 months. I'm going on 5 years of Casodex alone. So far so good. Unfortunately, other issues have occurred unrelated to my cancer. Lumbar pain, sciatic pain and psoriatic arthritis, type 2 diabetes, hypertension, plus others. But, I'm still working 40 hours a week by my own choice so I feel blessed I can still do that. If you are reading this and are a "new" victim of this disease, don't give up and keep looking for the best treatment for you. Feel free to email if you wish.
PSA has increased for first time since started the Casodex. Will retest in 3 mos. Concerned but too many other issues to be dealt with.
Updating my story. Where it asks what my side effects are, I can't really say due to so many overlapping issues and drugs. My PSA has started to rise again. My oncologist told me years ago the median time before you have adenocarcinoma hormone resistent cancer is 7.5 years. So, That seems to be where I'm at as my cancer is now growing and soon spreading. A big frustration is that my medical Oncologist at Cleveland Clinic moved and I have no one at this time. Luckily my GP fills my prescriptions. So, If anyone knows where Dr. Jorge Garcia went, let me know. I'm dealing with decreased mobilization from back, sciatic, psoriatic arthritis and knee problems. Walking 50 yards results in geat back pain. I'm still working 40 hrs a week. I just need to sit down a lot. Also what I've learned is that when you reach (soon to be) 73, the medical community is not very attentive. Brent
I am on 50 mg Casodex daily. The typical treatmeny hormonally is casodex oral and Lupron or Goserlin by implant injection every 3 months. According to my medical oncologist I am lucky. But, I've read about other men on casodex alone and are doing ok. As previous mentioned, I had a goserelin implant one time and the side effects were so bad that I had to try Casodex only. Unfortunatly, my MO has moved to another cancer center and I can't reach him. My FP is approving the casodex refils. I'm soon to be 74 and still working 40 hrs a week and running my Veterinary practice. Enjoy what you have and not what you've lost. Always be your own advocate because your doctor may not care.
I just wanted to update. My PSA is 0.6 which means it rising slowly. I am currently and for the last @8 years been taking Casodex only.
History: I began Casodex @ 8 yrs ago and I had one Goserelin injection. The Goserelin made me so miserable that I requested from my Medical Oncologist to only take the Casodex. Casodex and Goserelin type concurrent therapy is wwhats recommended as it was felt casodex alone would be ineffective. He was against it but allowed it because of my research. My research was from these patient's history's where some had just montherapy and had success in slowing their cancer progression. On 5/2018 my PSA began to show up again. It was 0.1. I monitored it every 6 months or more and by 11/17/2022 it had increased to 1.4. At that time I reconnected with my "old" oncologist. On December 8, 2022 my PSA was 1.13. He felt the Casodex was no longer effective and said it even may be having bad side effects. So, he stopped the Casodex. He also recommended a genetic testing as my oldest son deleoped prostate cancer at same age as me, 50 yrs. My nephew last year also developed prostate cancer. I've yet to be told of the genetic tests significance. Three months off Casodex my PSA is now 6.2. Was it a mistake to stop the casodex? I believe so. I have a phone consult with the oncologist soon. I already told his nurse I want to start the casodex again. Will he allow it? Can I get the genie back in the bottle? If not I'm screwed.
My last update ended @3/9/23 when my PSA was 6.2. My original oncologist said the casodex was not likely working anymore since I was on it for so long and told me to stop it. My PSA had risen from .6 on 2/22/22 to 1.4 on 11/17/22. He made me quit the casodex and thats when it rose quickly to 6.2. So I stopped it and he wanted to run a DNA testing which showed nothing relevant. He then wanted to run the "new" prostate cancer PetScan which showed no mtastasis. Present still were sites in my pelvic lymph nodes or pelvic fat. These tests were to be done before beginning a new drug that likely would have side effects greater than the minnimal ones I was having on casodex. The quick climb of my PSA from mid 1-2 to 6.2 after my Casodex was discontinued scared me and I began taking the casodex again without my oncologists knowing. I could see my test results later and was waiting for a call from him or his office which never came. I kept taking the casodex (for some reason, I had accumulated a few months of the drug). My other physicians permitted the repeat testing of my PSA. On 6/20/23 it was 1.9. My testosterone was 397. On 9/26/23 the PSA was 1.4 and on 12/19/23 it was 1.0. I am now running the PSA every 6 months. The oncologist never contacted me after the PetScan testing. I have a new oncologist who is much more willing to work with me and is in complete agreement t continue the Casodex alone. Note: Many years ago when I wanted to take just the casodex (blocking agent) and not the concurrent testosterone preventing drug, the first oncologist said the casodex alone would not be effective. Because I was able to see where some of the people on this site were managed sucessfully with casodex alone, I had reason to believe it was worth a try. The side effect of the additional drug, gosserelin or lupron, was so severe I didn't believe I could live or work while on it. Anyway, I'm 77 with a pretty healthy mind but other physical issues. IE: psoriatic arthritis, a bad back plus others. I had major back surgery 6/2022 and had to retire. I don't recall mentioning it but my son got prostate cancer at 50 as well as a nephew. All the other boys are on "High alert". Best wishes to all of you. Remember: do your research, question your doctor, do not wait on testing. Only you can be your own advocate.
Brent's e-mail address is: bryanvet1 AT gmail.com (replace "AT" with "@")