Glad I found you guys; but sorry I found you guys

I surely hope everyone found the humor in my subject title. This is a great forum, but I wish I were not here. (you too huh?)
I'm 57, 6 2", and at the time of first doc appt, I tipped the scales at 227. I'm now 202 and still dropping. Lost 25 lbs in less than three months by just stopping the sweets and significantly reducing fat intake. No more rocky road for me. Uro doc said to eliminate all animal products that "might" have been fed hormone growth factors, and to eliminate all dairy - period. Free range chicken is okay, as well as venison. We buy chicken that is stamped - 'no hormones used in the production of this product'; Aside from that I'm almost vegan now.

So, I've got a wicked case of PCa. I'm now 4.5 weeks post op (rrp). My journey started out with an annual physical where my family doc did the routine blood work, and noticed that my psa was up to 3.07 this year, from 2.26 last year. DRE was negative. As I've learned, my velocity is an eyebrow raiser. So, I asked for the free psa test, which came back at 18%. Still gray area. But I was concerned enough that I made an appt with my urologist. He repeated the DRE, and immediately felt a nodule. Sooooo, he set me up for a biopsy.

Biopsy was ugly. 7 of 18 cores were positive ranging from just under 5% to 60% adenocarinoma, mostly on the right side, with one 5% on the left. Highest Gleason was 4+5=9. My uro doc has performed over 2000 rrp's and averages 60 to 80 a year. He flat out told me to not allow anyone to talk me into any form of radiation for my situation. I did not understand that at the time, but after conferring with a top oncologist, it made more sense. With a G 9, I'm at a high risk for re-occurance, so let's save the radiation bullet for if/when needed.

So, it's off to surgery we go, which was done on July 21, 2010, and catheter removed on Aug 5. At this point, I'm 98% continent. The only thing I liked about the catheter was that I could drink a great big glass of ice water right before bedtime, and not worry. At this point, I only dribble a tiny amount when I cough, sneeze or lift something from an awkward position. My uro doc also was not in favor of the nerve sparing, which troubles me a little, but it is what it is, and at this point I'm 100% ED. Mr Happy is now a sad little critter with only one use.

Next step is back to uro doc on Sept 3 for six week post op psa, and first shot of lupron which I'm NOT looking forward to. I'm a pretty high energy kind of guy, and spend a lot of time working in my shop and in my garden. Wife and I just finished our retirement home - moved in first week of Feb, and I've still got a lot of yard projects to do. (4 acres in country - new kubota tractor he he) Just waiting on cooler weather to start tackling projects, and I'm worried about lupron shutting me down. We'll see. I sure would love to hear the experiences of others with lupron.

oh yeah; post op pathology - still 4+5=9. Negative lymph nodes, negative seminal vesicles, negative bladder neck, and negative surgical margins. I think everyone was surprised that it was contained. perineural invasion was extensive. PT2c N0MX.

prostate was 4.5 x 4 x 3.5 and weighed 32 grams

If I've left anything out, just ask away. Otherwise, the above is more information about me that I ever wanted to know.

Although my wife is a couple years older than me, she presents herself much younger, and is still a beautiful woman and extremely supportive. My two children and grandchildren live within ten miles, and I desperately want to watch those grandbabies grow up.
As soon as I finish this long list of yard projects, I really do want to take grandson fishing.

Anyway, I would appreciate any and all opinions on my situation, and treatment plan. We're still hoping and praying for a good prognosis and a long life. But that's really not in my control is it?

I hope each and every person on this forum has a great week.

k

kbota
- very glad you found this place - it can be a wealth of support and information
- you seem to have your act together and coping well -
-wishing you and your family all the best and have a great week.
BRONSON

Welcome k,

From the detailed information that you provided I assume that you have been checking in at healingwell for a while.  Your Uro visit next month should give you some indication of how the surgery went, but the 3 month or 6 month psa checks are more telling.  Having projects around the new home will keep you active and the mind thinking about things other than PCa.  Enjoy the family every day.  I wish you all the best in your recovery from surgery, keep healing.

Dan

"The idea for the surgery was to CURE you and it sounds like it did. Has your doctor explained why he thinks this is necessary?"

Hello Mr Fairwind. We meet again (I'm Bentley from cancerforums.net) Trust me, the upbeat attitude is something I really have to work at. I couldn't do it without my dear wife. I assure you that two months ago, I was lower than a snakes belly.

Your question is a good one, and I've asked uro doc the same thing. Here is his answer which he was good enough to put in simpler laymans terms for my benefit; " All of our cells have a finite life which varies somewhat depending on cell type. PCa cells are primarily fueled by testosterone, so,....if we remove the PCa cells source of fuel, then hopefully, the cells will die off and not come back even after the lupron is stopped. Since your PCa was contained, two years of lupron should be of huge benefit in that regard." My uro doc has explained to me several times about how PCa spreads; 1. via lymph node system, 2. via extra prostatic extension into surrounding tissue, and 3. via the blood. Since my surgery, we have eliminated #'s 1 and 2. The lupron hopefully deals with #3.

I sure hope he's right.

"I sure hope he's right."

He very well may be...But even the doctors disagree...Mine agrees with Dr. Walsh that some PC cells, usually a very small percentage, are hormone independent right from the start and HT has no effect on them....This percentage varies from person to person so HT is more effective in some people than in others..But it is never curative..

I bet your doc has found that this treatment profile has improved his outcomes and the side-effects are worth the benefit delivered...You can't argue with that...

Why not just wait till yo have the reoccurance your uro is so sure you will have, before you get additional treatment. A flag would have gone up for me when he did'nt even consider nerve sparing. If I thought you had the knowledge about the disease and yours was an informed consent, I wouldn't say anything. Looks to me like a case of trusting the good old uro/surgeon. I'll proly get slammed for saying it , but there it is.

"Why not just wait till yo have the reoccurance your uro is so sure you will have, before you get additional treatment."

I've seriously considered this, but I keep coming back to my high gleason score of 9. What if I have this one chance to kick the PCa's butt for good, and I pass on it? I'm scared carrpless either way I go.


"A flag would have gone up for me when he didn't even consider nerve sparing."

This does bother me. Especially when he got in there, and the cancer was confined to the capsule. My opinion waffles somewhat between "he was taking the conservative approach to save my life in light of the gleason 9" vs "He was reimbursed by insurance company the same $ whether he saved nerves or not, and saving the nerves takes another hour or so." I would sure hate to think that, but it has occured to me.

I wouldn't regret anything, but would get other opinions about hormone therapy at this point. Thats just a protocol I 've never heard of. Maybe your uro is on to something. I hadn't thought of Zufus point about masking any real psa rise post-op. Don't see how it will " take care of the 3rd route, " Don't believe Uro is being unscrupulous at all, just would really question the protocol. If the " Adjuvant treatment" sit well with you after learning more about it go for it. My Uro totally dismissed nerve sparing, with a you can get used to anything attitude, its better than dying. I like him and go to him for follow up but had surgery elsewhere and had 1 nerve spared. Even with the new surgeon who told me up front that he would only spare one side since biopsy indicate most was on the right side, I still felt he could have made the decision once inside, { maybe he did}. Point is trusted his knowledge on this point and went for it. I have no regrets on that. It was informed!! I would get other opinions, talk to uro about them, if he is not happy with that from you a red flag goes up for me. Heck since you are willing to go hormone therapy from the jump, don't and get ultra sensitive psa testing and with good prostate oncologist decide if and when treatment is needed. Side effects are real and may not even be nesearry in this case.

Hey Kbota
Welcome to HW.
We share the same git 'er done date, only a year apart. Don't look at me to be your guide or inspiration. I, too, have a one trick pony in my pants and even that is not done well - l leak faster than an old B7100 HST tranny.
I won't discuss the PCa or it's treatment - smarter guys than I have radically different opinions (see above).
I will say start trying to walk down the Pills, pump, prick road. If the pills and pump won't do it, relax. With a little kickapoo joy juice injection you can be a po*n star again.
Good luck to you. (And remember to use the GFMPH ploy early and often.)
Jeff

K:
Forget the uro. His work is done. Your onco is the guy for you. His attitude and decisions work. If any further treatment is necessay it will not be by the uro, therefor move on.

Hey there, sorry to hear you are like the rest of us. See below for my situation. Yeah, mine was even worse. I will start radiation and ADT in a couple weeks, probably followed by chemo. There is no doubt RP was the right way to go in my opinion. As for nerve sparring, I wouldn't worry about whether or not some could have been sparred without risking reoccurence. Most likely you would have had some level of ED anyway, as I now do, and from the research I've done, an implant is going to produce the best erection of any of the options (injections, pumps, etc). In fact, I hear it will be like you're 17 again!

Best wishes

Yeah I mentioned (masking psa's) and to get that second opinion from an onco or rad doc, that was fast with a phone call. Gee.....what a revelation, not a real surprise to me. Did like that you made that call, now you know to question anything and everything, look for the reasoning.      Since they are friends I am seeing a yield sign and Lupron in your future, ask doc thereafter...how about zoladex or even casodex.  No difference in effectiveness with zoladex, however the profit margin is much lower. There are no profits on casodex at the doc level, it is a pill Rx.

Maybe you should get the drugs with surgery, full disclosure from all angles should be known to you in fairness.  Don't ask about other drugs, they will not mention anything other than LHRH  types mentioned herein or casodex(flutamides).  It is rare to see uro-docs prescribe ADT3 with avodart or proscar to Lupron-casodex idea. 

Some patients have by passed surgery and do ADT3 per Leibowitz protocol...sounds insane but might not be all that insane..Rick K is at year 15 right now, no PCa found on new biopsies. Normacly as a man, can still do any treatment.  Go figure.

k -- i wish you the best.  here are a couple cases that may interest you.

http://www.usatoday.com/news/health/spotlighthealth/2002-10-14-giuliani_x.htm

http://www.phoenix5.org/articles/Fortune96Grove.html

F8