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Posted 5/9/2015 4:45 PM (GMT -5)
The explanations given me by my pcp for my elevated psa's through the years has ranged from "BPH", to "infection", to "yours just runs high". (But I WANTED to believe him. He was "Preaching to the choir").

With the onset of flow problems last fall and his continued reluctance to biopsy, I took it upon myself to have one against his judgement. (I "quit the choir" and went my own way).

Now again, I have doctors telling me things that do not jive with my instincts.

Dr. Hann (600 ops under his belt) at JH gives me "an excellent" chance for cure with surgery. But JH doesn't do intra-operative margins.

Neither does Smith at Vanderbilt.

Neither does the local rock star.

The only surgeon I've found who does is Tewari in NYC. But, he also requires me to stay away from home, convalescing in a hotel room in Queens, NY for 14 days. Thats alot of stress on top of what's already a stressful situation (for me).


The point of all of.tof.this is that I believe I have a greater chanc than usual chance of a positive margin because I believe this cancer is what has been causing my psa to be high. I believe there's as likely as not a chance that I've had this cancer for at least 5 years. That's what I believe. Given that belief, I also believe it makes for a greater likely hood that there's "a cell or two just outside the prostate itself, notwithstanding the fact that an MRI shows no evidence of this.
Posted 5/9/2015 4:58 PM (GMT -5)
Its therefore MY judgement that seeds or radiation or both, (ie. Those guys in Atlanta) is "the way to go" (for ME).

That would also, seems to me, be less tramatic.

It's HARD to go against "cconventional wisdom" of the almighty docs I'm speaking with who are singing, in unison..."Surgery, surgery, surgery WILL CURE YOU"

Screw that.

Ones man's blunt accessment of what he believes about his own stuff. Everyone else. ..Have at it For your own stuff. :)

I don't wanna have ANYTHING done. But, I don't get to have that choice

And I don't wanna hear anything about AS. This isn't an "AS thread".

These posts are my feelings today. Obviously subject to change. But, I've got.to go with a Tx. I cannot think about anything but this stuff and I have GOT to get SOMETHING done.

Tewari won't even do another biopsy because he says he would doubt all g6's if that's what said biopsy came back as. I trust his judgement.


Going to NYC again tomorrow to meet with an MO at his urging. This is what I'm going in wIth..

I will listen to him with an open mInd. He's there to help me to decide his input is important.

Post Edited (island time) : 5/9/2015 4:10:12 PM (GMT-6)

Posted 5/9/2015 5:19 PM (GMT -5)
Well,sheesh, Islandtime,then do what you want, brachy, (LD or HD), IMRT, SBRT...whatever radiation treatment you want. They are curative. Of course, Tewari, et. al. want to do surgery, that's what they do and correctly believe in it...you do not..so don't do it. Do something before you drive yourself nuts.
Posted 5/9/2015 5:21 PM (GMT -5)
....and you are hardly the only one who cannot deal with AS..it's not a crime :)
Posted 5/9/2015 5:43 PM (GMT -5)
Island Time: RT is a good choice with equal or better chance of cure. Sounds like your are headed in the LDR, HDR, SBRT direction. With your stats, these are good treatments for you to research and take your time to consider. Talk to folks that have gone through this and read some outcomes from the search option above. No doubt other RT guys will chime in with their personal experiences and profound wisdom.

Rest assured you have come to a great place for support. The very best to you and keep us posted.
Posted 5/9/2015 5:47 PM (GMT -5)
Island Time: RT is a good choice with equal or better chance of cure. Sounds like your are headed in the LDR, HDR, SBRT direction. With your stats, these are good treatments for you to research and take your time to consider. Talk to folks that have gone through this and read some outcomes from the search option above. No doubt other RT guys will chime in with their personal experiences and profound wisdom.

Rest assured you have come to a great place for support. The very best to you and keep us posted.
Posted 5/9/2015 6:54 PM (GMT -5)
I assume you posted that to get a reality check, so here it is. Probably not what you want to hear, but "going with one's gut," or "intuition" are almost always wrong. For a fascinating discussion of why that should be, I recommend the book: "Thinking, fast and slow" by Daniel Kahneman.

You have "low risk" PC, probably "very low risk," and all your options are likely to be curative. I hope you don't become the cause of your own problems by choosing a therapy, like combo brachy + IMRT for low risk PC, that increases SEs without increasing oncological control. But you, not I or any of your doctors, have to live with your choice.

- Allen
Posted 5/9/2015 7:34 PM (GMT -5)
Yes..TA, Thinking , fast and slow" is very good. Makes you think..HARHAR. But seriously, it does help with the decision making process in life in general.
Posted 5/9/2015 8:15 PM (GMT -5)
I was talking with my step dad last night. He's 86.

Spoke with him of my delimna about having to choose between lessor quality health care along with emotional security and "doable " stress levels VS. the best health care along with emotional insecurity and "undoable" stress levels.

He said he'd pray for me and went so far as to say he'd fast a day for me. His whole church is praying for me...fwiw. Myself? I've never been that religious, but what he said did bring comfort. Whether it has anything to do with curing cancer? Who cares.

Point being...he said he could not help me with my choices. That only I can do this and it has to come from me.

He even went so far as to say he hesitated to even offer what he'd do because he knew that sometimes, the more people one talks to and the more opinions one gets...The more confused one can become.

That's where I'm at with this ****t.

But...that's my problem
Posted 5/9/2015 8:26 PM (GMT -5)
I can tell ya this.

Where I live? One doesn't get to just look at the odds of whether the available treatments will cure you or not. One must add a third variable. Whether or not the providers are going to kill you or not.
Posted 5/9/2015 8:43 PM (GMT -5)
All I know, and all I've ever heard from others (here and elsewhere), is that when you make the decision that is right for you, you'll relax. It really does work that way. It's not all intuition or 'going with your gut'. It's a combination of fact finding, emotional readyness, personal preference, the feeling of trust in the practicioner you're lookig at, and other factors. No one here will tell you what to do, and none of us will ever argue that you made a bad choice after the fact.
Posted 5/9/2015 11:25 PM (GMT -5)

island time said...
Its therefore MY judgement that seeds or radiation or both, (ie. Those guys in Atlanta) is "the way to go" (for ME).

Well sounds like you pretty well have it figured out.

I know several people who have been very happy with those guys in Atlanta, 5 1/2 hours from here.

Island said...
That would also, seems to me, be less tramatic.


Almost certainly, but no guarantees. Though there might be more potential SEs from seeds plus EBR(compared to seeds alone) like the Atlanta guys do, I think they use a lower dose for the EBR, or something. Anyway, like I said, the guys I know who went there seem to have no complaints, with some being quite happy with the results. I only wish I had been able to use them- in retrospect I think I could have but it was a near impossible decision. I used Smith at Vandy instead. OTOH, for those guys who are so happy, it often takes a lot of years before you know about either surgery or RT and how it will actually work out. But the "good" thing about that is you can die of something else during those years you are waiting to find out. How ever many years you get will be more enjoyable with fewer SEs, obviously..

Island said...
It's HARD to go against "cconventional wisdom" of the almighty docs I'm speaking with who are singing, in unison..."Surgery, surgery, surgery WILL CURE YOU"

Yes it is.

Island said...
Screw that.

Ones man's blunt accessment of what he believes about his own stuff. Everyone else. ..Have at it For your own stuff. :)

I don't wanna have ANYTHING done. But, I don't get to have that choice

And I don't wanna hear anything about AS. This isn't an "AS thread".

Well that is unfortunate, but there it is. Will you at least consider that you have a lot of time to think about what to do without putting yourself in danger? Any decision you make, other than maybe that thing you don't want to hear about, is pretty much irrevocable. So take your time to decide correctly, so to speak.

Island said...
These posts are my feelings today. Obviously subject to change. But, I've got.to go with a Tx. I cannot think about anything but this stuff and I have GOT to get SOMETHING done.

I know, it can drive you crazy. There are choices, and none of us really has the ability to make such decisions. Even after we study a lot, we're still not doctors. And our doctors, with their different specialties, and different opinions, might well have difficulty giving us unbiased advice. At least it seems that way. Anyway, hang in there, we've all been there and know that it's a miserable place to be.

Island said...
Tewari won't even do another biopsy because he says he would doubt all g6's if that's what said biopsy came back as. I trust his judgement.


Going to NYC again tomorrow to meet with an MO at his urging. This is what I'm going in wIth..

I will listen to him with an open mInd. He's there to help me to decide his input is important.


This sounds like a sound approach. But whatever you decide, I hope you can take your time at least to think things over. I know it is driving you crazy, but if you can just come down from that anxiety at least long enough to take adequate time to think before you do the irrevocable? Consider, you know with at least as much certainty as you had a year or two ago that you did not have PC, now you have just as much certainty- maybe more- that you are only a G6. And something you need to look up before you do anything major is: what are the odds of my G6 PC killing me before I can die of something else? Or odds of killing you period? Pretty darn low to say the least.

Now sure, you might have G7 or G9 and don't know it. But that is like saying 2 years ago: hey I might have PC, or I might be G9 PC. Pure wild guess work back then, because without a Bx you had no way to know if you had it or did not have it at all. Now you have a Bx and all you KNOW is that you are a G6. So all you know for sure is that you have an extremely low risk cancer. Your final pathology might upgrade you, or downgrade you(I was very slightly downgraded from 5+4 to 4+5).

Anyway, if you can just stand it, it might be very advantageous to your future quality of life not to pull the trigger too quickly. Just remember the old saying, when seeking advice from various specialists if they are also going to be the one's who treat you: If a man has a hammer(and makes his living with a hammer), everything looks like a nail.

Post Edited (BillyBob@388) : 5/9/2015 10:28:23 PM (GMT-6)

Posted 5/10/2015 8:08 AM (GMT -5)
Just to point out the obvious, IT is not exactly "rushing into anything" . He was diagnosed 6 months ago, and has been highly deliberate in his decision making process.

IT, you know I can't , and won't, offer any further advice, We are all colored by our own experiences and have our biases as a result, and I am no exception, so I don't want to steer you, not that I could.

but I do have some comments.comment. When you said ...[quote]The point of all of.tof.this is that I believe I have a greater chanc than usual chance of a positive margin because I believe this cancer is what has been causing my psa to be high. I believe there's as likely as not a chance that I've had this cancer for at least 5 years. That's what I believe. Given that belief, I also believe it makes for a greater likely hood that there's "a cell or two just outside the prostate itself, notwithstanding the fact that an MRI shows no evidence of this.


I would say, that is pure speculation on your part. It's from your gut, and your gut is being clouded by your fear. As TA stated , intuition should not factor into this, the results of your biopsy and MRI should. And also as TA said , don't let yourself become the cause of this becoming a bigger problem than it is.

You've gotten good comments from many here, but I think the wisest comments were from your stepdad...where he said.....

[quote]Point being...he said he could not help me with my choices. That only I can do this and it has to come from me.

He even went so far as to say he hesitated to even offer what he'd do because he knew that sometimes, the more people one talks to and the more opinions one gets...The more confused one can become. .

Good luck with your MO visit. Whatever he says, take it seriously, he seems VERY highly credentialed.
And if you want to meet up for a late dinner or a beer later, when you get to NY, give me a shout

Post Edited (Pratoman) : 5/10/2015 7:17:17 AM (GMT-6)

Posted 5/10/2015 9:29 AM (GMT -5)
IT:

Just one other point. Somewhere, you referred to having prostate problems. In my case, I was having severe BPH issues. Specifically, I was having great difficulty peeing. Flomax had worked wonders for years but was starting to lose its effectiveness. There were 2-3 times where I had my coat on about to leave for the ER to get a catheter put in, but somehow I managed to avoid that.

That situation was one of the many reasons I chose surgery and I have to admit that it totally solved the problem. Has PC not been discovered, I was going to go the Greenlight Laser route.

IF I've described your problem, then you might again want to factor that into your decision.

Anyway, as others have said, you have a huge menu of choices.

You made the right decision getting off the surgery bed before the surgery.

I may actually be doing the same thing, as I am reconsidering radiating my lymph nodes (different thread that I posted) after doing the simulation

Mel
Posted 5/10/2015 4:05 PM (GMT -5)

Pratoman said...
Just to point out the obvious, IT is not exactly "rushing into anything" . He was diagnosed 6 months ago, and has been highly deliberate in his decision making process.............

OK, thx Prato, I missed that part. Somehow my impression was that that though he felt he was being pressured towards surgery, at the same time he felt he had to do something quick. My feeling, even if I had realized it has been 6 months, still no huge rush in his case. Of course, if it is driving him crazy, then there is going to be a rush to get past that.
Posted 5/11/2015 3:50 AM (GMT -5)
Mel...yeah, I'm on Flowmax as well. .4 Mil/day.
JH RO said he doesnt see cathing me at all with IMRT. Proton guy says the same. University of Tenn. RO says it's 50/50.

I'm following your decision making process. I can't find your stats (nnot that I'd have any input if I did). My brother-in-law is stage 3 with a 9 in a node. They, and JH is throwing it all at it. I believe they're looking at about your numbers as well. Good luck with whatever decision you make.

BillYbob...tThx for the reminder that I've got time. I forget that part. Sometimes it just feels as if I'm starting over.

Prato and TA...yyou're both right to point out "jjust the facts ma'am, just the facts".

But, we're it not for my fear I'd never know I had it in the first place. Thats the part I can tend to "kkey in" on.
Posted 5/11/2015 5:12 AM (GMT -5)
Have you talked to anyone about SBRT yet? Much less stress on the body than surgery. You can follow my journey at the link in my signature. The decision about what path to follow is certainly one of, if not the, toughest part. You are finding that out my friend. We've all been through it here. Hang in there.

Mike
Posted 5/11/2015 2:48 PM (GMT -5)
island time,

There have been some great results here lately for guys who opted for surgery.

I'm North of Atlanta, on I75 between Chattanooga and ATL, and went for HDR Brachytherapy. Except for an evil anal fissure (from the biopsy of a new and over zealous Harvard educated urologist), that keeps on giving; I'm doing great.

I go for my follow up this Thursday but I already know my PSA is down below where it was years ago.

Since you're so close, I'd recommend seeing Dr. Rossi (RO) at Winship Cancer Institute or one of the guys JNF used at Georgia Urology.

St. Joseph's (Winship) was great though. Stop by on your way back to Knoxville and I'll buy us a Red Stripe!
Posted 5/12/2015 10:52 AM (GMT -5)
Dewayne...I'm just now working to get into see the brachy guy in NY. If they can't get me in today I will visitin Winship. Sure would be alot more convenient for seeds.

Wide open spaces...

:)

Im set for an appt. With the Cyberknife knife guy up here in the am.

Post Edited (island time) : 5/12/2015 9:57:30 AM (GMT-6)

Posted 5/12/2015 11:03 AM (GMT -5)
The meeting with the head of oncology at Mt. Sinai yesterday was very beneficial and Informative.

AS "is fine".

So...my problem seems to be around 30% physical and 70% psychological. LOL

But when I get home that bit of reality flies out the window.


I guess that explains why he he considers me ...well...to use his adjective...a "terrible" candidate for AS.

Post Edited (island time) : 5/12/2015 10:17:08 AM (GMT-6)

Posted 5/12/2015 4:00 PM (GMT -5)
I know, our heads mess with us. That AS that your doc says is fine is the only treatment that has guaranteed zero side effects, unless of course you count the PC advancing to the point where you definitely need treatment as a SE. But that's the one your most worried about, I imagine. Even if it is fairly unlikely it will ever advance enough to do you serious harm, it is probably possible and you worry that it will. (of course a lot of that assumes you are actually only a G6, and there is no way to know that with almost certainty except to take the thing out and examine it in the lab. At which point you could be either upgraded or downgraded or neither. But the price of that knowledge can sometimes be steep.

If you feel you can get a likely cure and adequate peace of mind with just Brachy or some other form of RT, SEs will probably be pretty low. It's tough to decide for sure. What you need is a crystal ball so you can see if you would advance enough to be a problem before you pass from something else. But I don't know where to get those. I just wish I would have qualified for AS, I would have been all over that. But different folks have different needs. I was bluntly told that AS was out of the question, kept that part simple.
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