HealingWell
Search Close Search
☰

What a strange disease.

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/10/2009 11:33 AM (GMT 0)
I have just received my latest PSA at 28 months post surgery which came in at <0.01. While naturally pleased each positive PSa result causes me to dwell a little on the various courses of this disease. I am at times stunned by its twists and turns. My post surgery pathology was positive for focal extension. One pathologist said Gleason 4+4/8 and a second opinion on the pathology said 4+3/7, both reporting very substantial extent in both lobes of the gland including extensive perineural and vascular involvement. To be honest, although an eternal optimist, I was fully expecting to have a recurrence before I got this far (I have met with rad and medical doctors and have a course of action planned should that come to pass). Yet here I am so far so good. Then I begin to reflect on the journey of some of my brethren here on the forum and elsewhere. I see guys with Gleason 6 or 3+4/7 with low pre-treatment PSA and low volume tumour and wham, there is no relief or there is a quick relapse. This bloody disease just does not play fair.
Bill
Posted 12/10/2009 1:15 PM (GMT 0)
Hey Bill this is like you have stated and it is not just: snip/rad/seed + salvage and call it all history, might be and might not be.

Some adjectives put on this (LOL)- jungle, twilight zone, limbo land, dragon, beast, snipers, quicksand......

Like another brother herein says (quoted John McEnroe's tv ads): "you can't be serious"?
(kudos to the guy whom posted that one prior in a thread)

It must be totally unreal for the newbie guys coming here and seeing so much and so fast that it makes Calculus look like 2+2 and you can handle it after reading Chapter 1 and pitch the book.

STORYTIME on PCa patient from years ago now: this was years ago now, guy had a suspecious psa number and went to uro-doc basically religiously and all the normal tests, got biopsies and nothing found, next year came back and same thing re-biopsied and nothing found.....guess what not much later more tests and another biopsy and found with more than he wanted to know about and was a fairly high stage I remember (vaguely now). He did everything right as a patient and still met up with the dragon(fire breathing version too) and was literally blind sided by this. So if one looks like headed towards psa doubling and high velocity...get your armor ready and load the brain with ammo is probably worth while.

Peace on Earth
Posted 12/10/2009 3:12 PM (GMT 0)
Billy,

Enjoyed the chat last night with you. So glad to wake up this morning and hear that you got your zero, congrats my friend.

Your point is one that I have tried to make before, PC has a mind and course of its own. Guys like me that shouldn't have had reaccurance quickly did, and guys with stats that would make you think they would, like yours, don't, (Which I am glad you are fine).

Its a fickled beast at best.

David in SC
Posted 12/10/2009 3:22 PM (GMT 0)
Hi Bill,
This is great new to hear of you PSA. I think personally that it is a fair call though (You getting another all clear!) - but the unpredictable outcomes are perplexing as you say. Anyway, you are set for a good festive season, so go celebrate and have one for us!
Then, get out on that golf course, and start working on that swing! cheers, Lana
Posted 12/10/2009 4:06 PM (GMT 0)
Hi Bill

I was bummed out when I was dxed with pc.I had the surgery,thought all was good.Then at 6 months post they hit me with the fact that they did'nt get all of it . and now I get to go through 9 weeks of radiation.This disease has a mind of it's own! best of luck to you and your's.

Zach
Posted 12/10/2009 5:24 PM (GMT 0)
Congrats for the zero, and for building a string of them. Also thanks for your thoughts as to the nature of this disease.
Posted 12/10/2009 5:45 PM (GMT 0)
Congrats with the Zero.

"Prostate Cancer disease not play by the rules."

That is what the senior doc at my clinic told me post-op as he made his rounds. He could not stress it enough.

Just gotta sit back and enjoy life as it comes.

Took this cancer to teach me the lesson. S'pose everything has a silver lining, just hope there are no PCa cells in it.

OBB
Posted 12/10/2009 5:53 PM (GMT 0)
Billy,
How right you are; 50% of positive margins don't ever have a reoccurrance and some clear margins do. Go figure. Just because you have a accurrate pathology after surgery doen't mean that you can act upon the information. You have to wait just like everyone else and see what the psa does.
JohnT
Posted 12/10/2009 7:32 PM (GMT 0)
John, I think it's that "waiting" under either scenerio that is so cruel in the PC world. Like you say, a "bad" situation may prove good, while a "good" situation may prove bad. There is really no rhyme or reason with a lot of what goes on in PC.

That's why any of our decisions and/or advice are so difficult to make or give. Just about the time you think you have something figured out with PC, a trend perhaps, a consistency, poof, an exception or example can be found to that finding.

Guess we do what we already do, keep learning, keep digging, keep sharing, keep supporting, and hope for the best, not only for ourselves, but for all our PC brothers, present and future.

David in SC
Posted 12/10/2009 7:44 PM (GMT 0)
Yes congrats with the Zero!!! However, it is very striking and to me… an affirmation actually, of how individuals on this site are pulling for each other, that is evidenced in the very fact that you had thoughts/and shared those thoughts, for and with us.   Thank you very much!!! BTW had my first post op psa pulled today. I looked very closely at the blood as it entered the tube and didn’t see any PSA but I’m not really sure what I was looking for.   I hope to be applying for an application to the club. Jack
Posted 12/10/2009 8:12 PM (GMT 0)
Billy,
The following study may explain some of this. It catagorized positive and negative margins with risk catagories. If you are in a low risk group having a positive margin means little. It is much more predictive in an intermediate and high risk group. Again this points to the differnce in agressive vs non agressive PC. If you have non agressive PC your chance of living a long time is high regardless of the treatment or the margins.
http://prostatecancerinfolink.net/2009/12/10/7398/
Posted 12/10/2009 8:36 PM (GMT 0)
Hero, i am rooting for your first post PSA score. We need you in the club.

David in SC
Posted 12/11/2009 2:07 AM (GMT 0)
Billy,
Congratulations and thanks for posting your insight into this unpredictable disease. I have similar pathology report to yours and hope to follow your footsteps.
Posted 12/11/2009 2:16 AM (GMT 0)
Great news Billy

Mika
Posted 12/11/2009 4:52 AM (GMT 0)
Billy,

Congrats on your sting of zeros. I'm always happy to see the surgery guys get their chance to join that club.
Posted 12/11/2009 6:15 AM (GMT 0)
On ya Bill, looks like us 4+3 guys are doing just fine, lets keep it that way......Cheers Kev.
Posted 12/11/2009 5:33 PM (GMT 0)
Just to reiterate how unfair it can be. My father went almost 35 years after surgery to PCa recurrence. Five years and 10 years are not magic numbers.
Posted 12/11/2009 10:21 PM (GMT 0)

STW said...
Just to reiterate how unfair it can be. My father went almost 35 years after surgery to PCa recurrence. Five years and 10 years are not magic numbers.

shocked Wow!! That is the longest interval to relapse I have ever heard of or read about.
Posted 12/12/2009 12:27 AM (GMT 0)
Same here, Billy, I would have been so amazed to have made it 35 years after the fact, I barely made it 6 months.
Posted 12/12/2009 3:02 AM (GMT 0)

Question for Jim B:

What does SUV mean?

Also, when they found those pelvic spots, can't they radiate just those spots?

Mel

Posted 12/12/2009 4:54 AM (GMT 0)
Hi Mel,

Standardized Uptake Value (SUV) as I understand it is a semi quantitative way to assess the activity in a given spot on a PET Bone Scan. They say that an SUV of 2.5 or higher is typically indicative of metastatic lesion.

They actually can radiate those spots and we probably will at some point. The drawback, however, is that to get at those spots they have to radiate through the bowels. I didn't tolerate that very well with the initial radiation and since I right now can't say for sure I have any pain associated with the spot, we are kind of just waiting. I've been really happy with the fact that since I went back on the lupron the spots have not grown any more. I don't know if the lupron has anything to do with that or just clean living.

By the way, I really do wish you all the luck in the world with your treatment. The last couple of weeks I lurked around the forum much more than normal and I am impressed with your tenacity in finding out as much information as you possibly can. Just remember, once you make your decision, it is your decision and never look back. You are making the best decision for you based on all of your education so be confident that you really are doing what is best for you. Once again, good luck.
✚ New Topic ✚ Reply