Poll of people with persistent PSA post RP.

So I feel so alone sometimes. Part of belonging to these sites is to find others like yourself and to get better information. I had RP in May of 2015. . I was 58 years old. At the time I was very frightened having a biopsy Gleason score of 4+5=9 and a PSA of around 12ish. My mindset at that time was that I would get this thing out and that would be it. All seemed to be that way when pathology came back as negative margins and no lymph node involvement. Final pathology determined Gleason 4+4=8 with Tertiary 5 component present and it did have Perineural invasion. First post-op blood test revealed a PSA of 9.11 and my doctor was shocked. Must be a mistake. Another blood test was taken that day and it came back 9.6. Yikes that was over a couple days. Most likely metastatic or micro-metastatic disease that had already spread elsewhere in my body. Next up was CT and Bone scans. Nothing definitive and it was pretty much determined that I had micro-metastatic disease and should start Lupron right away. The Urologist said that radiation therapy was not an option. So at this point the fear and hopelessness had set in and I went through months of anguish over my situation. I had officially in my mind written myself off. I started to research every site on the internet and read every bit of literature and somehow was able to always find the darker side of each one and fit it to my situation. Don’t get me wrong, much of it is my situation but you can’t read everything and always look at the bad. Lupron is one of those meds that if you read the side effects and symptoms from it you would be faint of heart. After my first shot I was plagued with the hot flashes and constant fatigue. My manhood as I knew was entirely gone and I realized that I was destined to go through “Manapause”. So this attitude went on for a while and some things such as the hot flashes became less frequent or I just started to get used to them. I was watching my blood work each time I went for the injection and it was down from the original 9.6 to .41 to .14 and the last reading was .03 which is pretty much undetectable. It was a short time after that when I had my epiphany. I am not and I refuse to be dying of cancer. First off compared to other types of cancer this has a very slow progression and we will have some time before it gets ugly. Manapause is not the worst thing once you get past the fact that you have really changed. The upside is we are living with the cancer and that the Lupron is just one stage of many and each will give you more time. Some people go decades on Lupron. I guess what I am trying to say is that you need to accept, read and educate yourself, and then deal with it. Every day is different going forward. I have posted this other sites and can not find anyone that fits this level of advanced cancer. I know everyone is different but would like to know how others like me are doing as far as PSA progression or disease progression and Lupron resistance. Anybody out there?

There a lots of guys here with those kinds of stats. You'll find plenty here who deal with that.

and good news on the PSA. It should stay there for a long, long time.

Andrew

Hi, Thanks for sharing your situation. It sounds just like mine. I'm 52 and was diagnosed with PSA 10.7 a few months ago and completed RALP surgery at Stanford in August. Gleason 4+3. Negative margins so thought it was all contained as I also had clean bone scan, CT scan, and clean PSMA/PET Galladium 68 scan.

So we were really surprised and shocked by a 4.0 and 4.5 in my first PSA tests 40 and 70 days after the RP. Doctor thinks micrometastatic disease. I'm fit and feel great, no other systems.

Trying to get second opinions, but seems ADT is next and no chance of curative solution. Happy to share notes as I do down this road, and I appreciate any input or suggestions from your own experience. Any trials? Success with supplements? Thanks and good luck.

Hi Scotch,
I am also one of those folks who had RP and thought everything would be fine. My post pathology was also worse than the biopsy, and my psa never reached undetectable. My bladder neck margins were questionable, and scans were clear. I have been on ADT for 4 months, and am now 4 treatments away from completing SRT (38 total). I am hopeful this will be the end, but one never knows with this crazy disease..

Unfortunately persistent PSA isn't that unusual. Check my numbers below. SRT + ADT seems to be the most common treatment. Please post your stats in your signature and ask any specific questions you have.

Good luck!

12.5 years ago I had the same operation, psa 15.x, and the same post surgical pathology, 4+4(+5), and node positive, also age 58. Post surgical psa was 2.7. Yet here am I. I currently take two Xtandi a day, T=800+, and I have had psa of 0-0.03 on this treatment for the past two years. Had numerous other treatments of the conventional varieties for our disease beforehand. I shall be here for quite a while. You as well.

mattamx said...
Y’all know the OP was well over a year ago?

Don't they call it resurrecting zombie threads? I've seen several of those recently.