Not happy I'm here, but it's good to be here!

[BillNIttles]

Hello. I was diagnosed in 2010 at the age of 44. Gleason score 3+4, downgraded to 3+3. I opted for robotic RP, didn't take. Got salvage radiation, didn't take. On my doctors's advice, I'm headed to the Mayo Clinic in May for a C-11 PET Scan. We're hoping it will pinpoint a spot where the cancer is, such as a lymph node, which then can be removed. Any of y'all benefited from this? 

I'm kinda bitter at the moment. I wish I had waited a while to get treated, but at the time, because of my age, I was encouraged to get surgery. I'm doing ok, pretty leaky but no serious Ed problems. My PSA is still very low, but doubling about every 9 months. I'm not looking forward to future treatment. 

Thank you, it's good to share and vent.

[David1958]

Hindsight is always better than what you start out with when first diagnosed. It can be a hard pill to swallow. By not taking, do you mean residual cancer was left behind? If that is so, I do not see how waiting would have made anything turn out better. It sounds like you have a very tough case. Hang in there, we are all pulling for you.

[BillNIttles in reply to David1958]

Thank you., I appreciate it. Yes, residual cancer. I know, hindsight etc.  I just meant that within a year post treatment, it seemed the medical community started being concerned about over treatment, advocating waiting longer and promoting active surveillance for people with low PSA, like me. Honestly, I have no idea if mine is a tough case, I just know I have cancer and will need to treat it sooner or later. I'm not dwelling on regret, I just needed to put it out there. Thanks.

[durango in reply to David1958]

Ah hindsight what a wonderful thing that is and I have plenty of it but no point in looking back ahead lies the way , just think on how medicine has moved on just in my 11 years of travelling this road and that's a fact best regards Dave .

[JoelT]

So sorry that you have this disease, it can be very hard not to feel bitter especially at your young age.  I think that your decisions to seek treatment were very consistent with the the best thinking, but as you know there are no guarantees! 

You didn't mention if you are currently on hormone therapy or what is your current PSA.  

Joel

[BillNIttles in reply to JoelT]

 Thank you, I appreciate your reply. I agree, my decisions were probably the right ones at the time, and of course, times change. I won't dwell on it. 

I am not on hormone therapy yet. We're hoping my C-11 scan will show my cancer in a location where it can be removed surgically. That will buy me a lot of time before I have to start therapy. My PSA is low, 2.9 at last check, and doubling about every 9 months.

Thanks

[JoelT in reply to BillNIttles]

Yes, times do change, but all any of us can do is make every effort to learn as much as possible and us e that information to make the best possible decision for our self.  Times do change and so does thinking and technology, but that has no meaning because when you made your decisions you did eveything you could possibly have done.  As long as you did that there is never a good reason to look back and feel regret.  Regret only comes when you didn't do the best job of educating yourself that you might have done.  Yes, you can be unhappy with a result,or a lack of a result, but that is not regret.  Never look back, look to today and to tomorrow, yesterday is gone and we did what ever we did, it is done.

Joel

[BillNIttles in reply to JoelT]

Yep. I am ok with my decisions. I know they were the right thing to do at the time. Thank you

[Vitruviusman]

I was also young when diagnosed with Prostate cancer. I as 53 a few years older than you. I had a gleason score of 3-4. Had robotic surgery. Now left with ED.   Keep us informed of your progress and the results of these up and coming tests. When you said "the treatments did not take" , does that mean you still have active cancer that the doctors do not know exactly where?

[BillNIttles in reply to Vitruviusman]

Thank you for your reply. Yes, residual cancer. My doctor recommended I get the Choline -11 PET scan as a next step. It may or may not locate my cancer, but it's worth a shot. If it is localized somewhere that I can get it surgically removed, I probably won't have to start hormone therapy as soon. From what I have read, it seems worth it to me. We'll see.

I read your posts and I'm sorry about your results. It sucks, and I wish treatment could be more predictable, but that's nature. Medicine and technology, as well as attitudes toward treatment change all the time, hopefully we'll benefit.  Take care.

[Tak-Druk]

Hi Bill,

I feel inspired to post a reply to you because of one consideration that I do not see in your approach.  First... I am 47, I was diagnosed at 42 with Gleason 4/4 and a PSA of 2.4.  One year after SBRT (Cyberknife) my PSA stopped it's decline before hitting <.01, turned around and started to climb again.  Although undetectable at the time of my radiation treatment, the cancer had most likely already spread from the prostate when I had it.

My understanding is that once the cat is out of the bag, you can't really put it back in (the idea behind RP is to get the bag OUT before the cat.)  In my case, the pre-radiation scans showed no detectable signs of cancer outside the prostate; but it was there - just microscopic and undetectable.  So that a little over a year later I was showing tumors in my lungs and bones, even though my prostate was charcoal!

My concern is that if the cancer is outside of the prostate, it has the potential to spread and grow if untreated.  Even if your scans detect a tumor that might be removed: surgery and radiation are typically more of a 2nd or 3rd line of defense in PC treatment (after metastasis.)  If surgery is the only approach one takes after it is outside the prostate, I fear that could just be an endless game of whack-a-mole.

I believe that generally the first line of defense in metastatic prostate cancer is Androgen Deprivation Therapy (ADT).  I am doing this now.  I combined ADT with docatexel chemotherapy, and my tumors shrank by at least half.  The chemo sucked, but it wasn't so bad (I had deep sympathy for some of the women with whom I would sit in the infusion center, who were taking 2 and 3 chemo agents for their breast cancer.)  Luckily my ADT side effects are tolerable.  My hot flashes are an annoyance.  I even still have enough sexual function to have fun (although I have ZERO libido... so sex is sort of an act of faith at this point.)  I've been on Lupron and bicalutimide for almost 2 years now and my PSA has remained at <.01 the entire time.

I hope this is helpful as food for thought - if perhaps you have not fully considered all of your possible approaches.  Best wishes in your journey.

[BillNIttles in reply to Tak-Druk]

Thank you, you're making me look at it more deeply now.

Of course that cat's out of the bag, I have cancer that's not going away. I like your whack-a-mole analogy, but hell no am I getting repeated surgeries, chasing glowing cancer specks around my body with a knife. My urologist recommended the C-11 test as a one time deal, thinking it could delay the need for hormone therapy for a few years. I don't have any expectations good or bad, but I thinks it's worth a shot.

 I am now going to read a lot more about ADT therapy and chemo (I've blown it off for quite a while now). That actually wasn't offered to me as treatment at the time I was diagnosed. It is great to hear that it is working so well for you!  Please keep me  up to date on your progress, I mean your cancer's lack of. Thank you.

[TGTaylor]

I too was diagnosed at a young age, 49. Gleason score of 8. Robotic prostatectomy, 28 rounds of radiation, 2 years of Lupron. Remission for 9 months. C-11 Pet scan at Mayo in MN found 2 hot spots on my spine. Mayo created a body cast for me and radiated the areas in two successive days. Three rounds of 3 chemo treatments and two more years of Lupron.  Now the best part of my story. ... 4 years of no PSA. No drugs and no treatment!  Sure, I  have side effects like ED, back pain which is handled with meds, I'm still tired and get lots of sleep, bowel habits and eating habits changed dramatically but I'm here and enjoying life! The C-11found my cancer and Mayo was able to nip it in the bud. 

Don't loose hope, expect life to change a bit but know that science and treatment options continue to change and advance at incredible pace!  

I wish you my best and pray that you receive good results in the future. 

[BillNIttles in reply to TGTaylor]

Wow, thank you, I'm so happy you're PSA free! 

It is nice to know that the science has grown so much in the last six years. I appreciate your feedback, I hadn't heard personally from anyone who had done this, and my doctor didn't get real in depth either. 

Thank you, take care of yourself. I will know more in a couple of weeks.

[Minnesota]

I had radical prostatectomy at age 48 and am glad I did it when I did. I had Dr. Karnes at the Mayo in Rochester MN. I've been cancer free ever since. Sorry to hear it didn't go that well for you.

[Hidden]

Bill, how are you doing now?

[BillNIttles in reply to Hidden]

Hi, thanks for asking

I'm sorry you joined the club, but welcome.

I am doing fine. My cancer doesn't seem particularly aggressive, but the shit is persistent. I am very used to it by now.

I don't know if you read the rest of my history on the advanced Pca, but it has been a ride. Ending up getting chemo for the second half of 2016, along with lupron (and prednisone, which was awful). My tumors and psa went away immediately and I stayed on adt through 2017, then took a vacation. Not surprisingly it reoccurred, number showed up last July. We watched it climb slowly, but I have to go back on adt now.

It isn't good timing (never is), as I am finishing grad school this semester and I don't have the time. The worst part of lupron for me is diminished energy so we're going to start slowly. I started cassodex 2 weeks ago and we'll see if it changes things noticeably, then I will add lupron back soon. Then eventually I will take another break, then go back on something, etc.

Treatment options have grown exponentially since my diagnoses and research has exploded too. It is good we have so many choices, since cancers act differently for all of us.

Take care

Bill

[Dreamweaverman]

Hi Bill, I totally empathize with you. I am in the process of ADT and starting Radiation next month for 2 months (5 Days a week). I did have the PET Scan, and it showed a lymph node producing PSA in my right pelvic area. Pet scans are great in that they really help locate PSA, however, it is important to note that lots of stuff shows up on a PET Scan. Even benign stuff. I had a little scare after my pet scan, but it seems all is as well as it can possibly be at the moment. Lastly, Both Weil Cornell & Sloane Kettering in NYC are doing studies with PET Scans and offer a program that does the scan for free. Hope this helps

[Neathuh1]

Hi Bill.

I, too, can look back and rationalize that I made the best decisions I could with the knowledge I had at the time, coupled with a dose of fear. Just wish I had more knowledge back then :). No use crying over split milk, right? My PSA kept slowly rising after surgery and radiation After a couple years it finally showed up in my lungs. Have been going to M.D. Anderson since and wish I had been under their expert care prior. After two years on Lupron (on and off every 6 months) my metastases are holding stable. We know that won't likely continue forever and I was heartened to read the article on Provenge as I was told I'd likely be on Xtandi with Lupron in the future. Anyway, I feel great and really enjoy when I'm off Lupron every 6 months. Good to get the old libido fired up again from time to time :). You'll do great, too. Just make sure you're getting the best care available...and that may not be a local doc no matter how kind and caring he/she may be.

God be with you on your cancer journey.

Bob