Prostate Cancer under 50 years old

I've mostly kept out of this thread as I'm in such a different situation than Scott. But I just want to chime in and say how touching it is to see guys like ISU-Cyclone, Steelguy, JNF, and others going out of their way, to reach out to another brother in trouble. This place is really so unique.

Scott, wish I could offer more, but I do wish you good luck in beating this. Get educated, find the ABSOLUTE BEST DOCTORS at the BEST CANCER CENTER you can find, and let them steer the ship, with your input.

Thanks. This is some of what I need to hear. I think my biggest fear is I am but 47. Just had first grandson. From day 1 I haven't had a bit of good news. One bad thing after another. Was told have RP biopsy shows Gleason 7, it's local and contained. Come back to find Gleason 8, had escaped in vesicles but got clear margins neg lymph so got it all so just monitor. First Post PSA showed 5.2. I thought this was good since it was 34.9. Come to find out it isn't. He said likely residual just need radiation. Doc wants retest a month later to see how low it will go. Instead it goes up not down 5.8, now the urologist shows concern. In the beginning he did tell us there is a spot on my bladder showing on the CT scan that he thought was thickening since my prostate was so enlarged. Cancer gleason of 8 bilaterally. He had told me the whole prostate was cancer nothing was clear no nodules but it was pressing on my bladder so it made the area thicker. Now he is not so sure. There's a chance this is where it went. How can I be sure if the doctors aren't sure. I've seen what cancer does and what treatment does and I am not sure what's worse.

Scott,

You have gotten a lot of bad news, and it has been compounded by receiving poor advice from the urologist. However, when it comes to the question of whether the disease is worse than the treatment, and which is to be more feared, I'm plainly more afraid of the disease. Even in the worst case scenario I believe that you have years to live, and you have MUCH to live for. By the way, I think you should probably also be consulting a medical oncologist.

FC

Scott,

Welcome to Healing Well. It’s a great place for support and getting info on Prostate cancer.

I was 44 when I was diagnosed with Gleason 9 PC. Mine actually went to some of my bones early, but I’ve been dealing with this for 8 plus years. I know this is probably driving you crazy because I’ve been there. It will calm down for you eventually once you determine how and when you kick this thing back.

If ever you need to talk or compare notes, don’t hesitate to email me or post anything and everything on HW. We’re here to help.

Jerry L.

Gwl61,

Sorry for the journey you had to take. What Gleason were you.

gwl61 said...
I was 47 when I had prostate removed, had 5.4 PSA. Dr. told me at that time to just remove it, he could do it with nerve sparring robotic surgery, well that didn't pan out they ended up cutting me open for the radical prostectomy surgery. I'm now 57, haven't had sex but twice in 10yrs. I wished I would have gotten a second opinion, I hate the Dr. I had he didn't tell me everything I needed to know. Another Dr. told me yrs later that the Dr. I had didn't have enough experience to do the nerve sparring surgery. It's been a depressing road for me. Good Luck to you.

 This is terrible I can not tell you how many times we see this.. that the URO (a surgeon) who gives you the biopsy results asks you when he/she should schedule the surgery?  I am a G6 with one core involved, 5.1 PSA and my URO tells me "Oh, well you're young so there is a very good chance that the cancer will grow and spread in the next 20+ years.....Let's get it out now"!!!  This is almost criminal and just bad all around...unethical???!

I located my Gleason it was a 6. I wished I had seen my biopsy report. It's hard to know what was right or wrong, in my case, I know back then Dr. never suggested trying something else, seemed like he was knife happy. All bitterness aside I guess I'm thankful I'm cancer free after 10 yrs. Just the side effects have be depressing and my Dr. didn't seem to care if my junk would work or not. Only thing he suggested was I needed to see psychiatrist, after no luck with Viagra restoring function. Too much nerve damage with his knife I guess.

Had my visit with the radiology oncologist. My wife was prepared way better than I was. They just started with the treatment they want to do the side affects etc.. She then combated them with further tests and how my scores show distant metastasis. He came back with we did bone scan and CT scan nothing shows so we want to do salvation radiation. 2 kinds, proton beam and something else and Lupron shots. By the time my wife got done with her concerns she had raised some in the dr as well. He left the room and ran what he called is a mskcc prostate nomogram and compared Scott,s results to the effectiveness of salvation radiation and came back into the room to tell us that she was right, it shows only a 16% chance of working. So I am getting a Pet scan first. The other tests are not covered by ins and experimental and cost thousands. So at least we get the pet scan. Still going to try Lupron that is my best chance no matter where it metastasized to. After a few months and pet scan with no results if my psa stabilizes and goes down they will start salvation radiation. If Lupron doesn't work then we wait until the cancer shows in the tests and start radiation where it shows. The tests show I have a 7 month doubling rate so it is growing very fast. I got my lab results finally but half I don't understand. The tumor involved 90% of my right hemiprostate and 80% of the left. Multifocal transcapsular extensions with perineal invasion poss left and right vesicles, Gleason 4+4, Current diagnoses pT3b, pNo PQRS 3267F, necrosis in right lobe abutting the uretha and tumor exted to the bladder base, right posterior base said the margins were clear but they were too small?? Forgot to add, new PSA 6.4

Post Edited (Scottomus) : 1/25/2018 3:59:12 PM (GMT-7)

Unfortunately I have complete ED. It's still early but the doctors are not expecting a change. My incontinence is getting better but likely will never go away. The surgery took 5 hours because of how extensive the cancer was and they had to remove more than they wanted and the prostate itself did a lot of damage with the necrosis to my urethra and bladder

Post Edited (Scottomus) : 1/25/2018 6:03:55 PM (GMT-7)

Being told they will start Lupron shots but I have to get them from my Urologist. Was hoping I could be done with him.