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Hello All- Age 51, PSA 47.6, Gleason 7--Oh Joy!!!

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Prostate Cancer
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Startech
Veteran Member
Joined : Jun 2011
Posts : 1154
Posted 6/3/2011 1:57 PM (GMT -8)
First of all, I want to thank this forum and members for being here. I have been reading this forum since the day my GP called about my elevated PSA.(Mid April 2011). I also want to thank the contributers of the this thread-------> Prostate Cancer: The Really Useful List made by HW people for HW people, which was a real help and comfort.

So, here is my history;

1985-age 25 diagnosed with enlarged prostate- Had difficulty voiding and Paruresus (shy bladder) since high school. However, did not know their was a medical term for it until last month.

March 2000 psa=.08
April 2002 psa = 1.4

Age 51, waited a 1 1/2 years to get the physical w/ dreaded colonoscopy. After getting the 47.6 psa, both docs said forget the colonoscopy.

May 17, 2011-Prostate Biopsy
Prostate volume 97--(whoa, that is big!)
PSAD:0.49
Prostatic urethal length: 6.1
3 of 12 cores Positive
Right Medial Base: G7 (3+4) 6 mm of 15 mm
Right Medial Mid G6 (3+3) <1.0 mm of 15 mm
Right Lateral Mid G7 (3+4) 1.0 mm of 4+7 mm (2 pieces)

Bonescan-Neg
CT-50% chance capsule containment
1 DR thinks Right bundle needs to go
1 Dr. thinks Both Bundles can be spared

Both Dr.s reccommend RP. 1 specializes in open RP and the other Da Vinci.

So, my head is still not on straight and I still have a lot of learning/research to make a decision. Luckily, I dont have to work and I have insurance. The flip side of that coin is I am alone and live in a motor coach with my 15 year old miniture pincture in an RV Park in San Antonio, TX.

I see a lot of welcomes to the club no one wants to join, but I am very thankful already to be here with you all. So, if you were me, what do you think so far?

Post Edited (Startech) : 6/6/2011 5:09:17 PM (GMT-6)

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60Michael
Veteran Member
Joined : Jan 2009
Posts : 2520
Posted 6/3/2011 2:02 PM (GMT -8)
Well, glad you posted Startech. I had robotic but there are moments where I wish I had open due to positive margins. But do some research and others will comment as you go through this part of the journey. Keep us posted.
Michael
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F8
Veteran Member
Joined : Feb 2010
Posts : 5738
Posted 6/3/2011 2:06 PM (GMT -8)
Startech -- sorry to hear that.  you're never alone man.  hang in there cool !

ed

 

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Startech
Veteran Member
Joined : Jun 2011
Posts : 1154
Posted 6/3/2011 2:37 PM (GMT -8)
Thanks Michael, is there a thread about your expereince?

Thanks Ed, its all good. Just trying to figure the logistics if go RP.
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compiler
Veteran Member
Joined : Nov 2009
Posts : 7709
Posted 6/3/2011 3:31 PM (GMT -8)
Star:

open vs. Robotic is not even an important decision.

Finding the best surgeon is. Experience counts here. I did a lot of research and chose the surgeon first. He happened to be a robotic surgeon. If his methodology was open surgery, that would have been fine, too.

If money/insurance is not an issue, are you near MD Anderson?

Mel

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rcroller
Regular Member
Joined : May 2011
Posts : 391
Posted 6/3/2011 3:31 PM (GMT -8)
Startech, I just did the open RP two weeks ago but wasn't a good candidate for DaVinci due to previous abdominal surgery. One bundle spared but the other was involved and had to go. So far so good. I'm sorry you have to go through this, but you are in good company here. These guys are the best and the forum has been a great source of support. Learn as much as possible and all the best in making your treatment decision.
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Cajun Jeff
Veteran Member
Joined : Mar 2009
Posts : 4175
Posted 6/3/2011 3:46 PM (GMT -8)
Startech: I agree with Compiler, Go with the Dr you trust the most and the Dr that you have the most faith in. We are here to walk with you in the journey. Do keep us posted.

Cajun Jeff
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cantexplain
Regular Member
Joined : Jun 2010
Posts : 74
Posted 6/3/2011 3:53 PM (GMT -8)
As you explore your options, might I point out that you should still get that colonoscopy under your belt before too long?  My situation was very similar - was going through a physical when the elevated PSA was detected and my primary, after referring me to a urologist and oncolgist, said:  "we got to get that colonoscopy handled" before you decide on what to do about the PCa - I did get it done, all negative and clear for another 5 years....and, very happy I got it done before and not after the dance with DaVinci.

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Jazzman1
Veteran Member
Joined : Sep 2010
Posts : 1203
Posted 6/3/2011 4:10 PM (GMT -8)
Everybody always says not to rush into anything because you have time, and you do. However, with your numbers I wouldn't mess around too long.

Having said that, you owe it to yourself to:

1. Talk to a radiation oncologist
2. Talk to a general oncologist who specializes in PCa
3. Read a couple books on PCa -- I recommend the Patrick Walsh book

You should seriously consider your non-surgical options. I'm not saying that radiation is your best treatment, but don't minimize the life-changing side effects that surgery can bring. I had surgery and I frankly regret not having considered my options more carefully. A conversation with a radiation oncologist would be well worth your time.

A general oncologist will give you an informed opinion that's not necessarily biased toward surgery or radiation. That's a valuable perspective to have.

Finally, do find some good reading material. The Walsh book has a pro-surgery bias, but it's still the Bible. Read something with a pro-radiation bias too, and keep an open mind.

Good luck and try not to freak out. There are lots of guys who had worse numbers than yours who are doing fine years later. Chances are excellent that you'll be fine.
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Jstars
Regular Member
Joined : Oct 2005
Posts : 489
Posted 6/3/2011 5:16 PM (GMT -8)
StarTech,

(JStars here ... having 'Star' in a name is always a good thing).

I see you have almost a 100cc-er there. That's about what mine was (when it came out was 110 gms).

One thing that puzzles a little is how they would get that out using Robotic. It is not like that can dice it up and send it out in pieces -- it has to be removed in one piece.
(My doc recommended open surgery because of that size)... Not sure if there is a size limit on IMRT probably not, but you are way out of spec for Brachy (around 60cc is the limit there). But you are not considering that -- no doubt you have been informed.

My Uro surgeon did say a 100cc prostate would be 'A challenge' but do-able. And he did -- all zeroes so far at 2.5 yrs but my numbers were really minimal. However anecdotally collected results here do point to larger prostate/surgeries not recovering erectile functions very well (80cc and up). Must be tougher to get the nerves off without trauma -- plus a large prostate usually has already traumatized such nerves by pressing on them for years.

Hey one thing to REALLY REALLY consider with surgery. Since you have BPH no doubt about it, you now have the one good chance to go back to peeing like an 18 yr old by getting that monster out of there. With radiation the urinary issues will only get worse with BPH (at least for a while) -- and lord knows how they would do a TURP someday if you needed one after having radiation -- i shudder to think.

So even if they suspect some extra-capsular extension of PCa (and you might need rad later on to cover it), if I were you I would insist on the surgery and worry about any escapes later when you have Ol Prosty gone gone gone and U Pee Freely.

Good luck with whatever you decide tho ....

J
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John T
Veteran Member
Joined : Nov 2008
Posts : 4315
Posted 6/3/2011 8:45 PM (GMT -8)
Stars,
At this time I would be concerned about the high psa. Your prostate size accounts for about 7 points and the pc they discovered about 4 points. This leaves about 36 points of psa that is unexplained. I would see a medical oncologist specializing in PC and get his opinion before you decide on anything. I would also highly recommend a PAP test and also a circulating tumor test as your high psa is indicative that the PC may already have escaped the capsul and surgery would not be effective.
Good luck and learn all you can about your particular situation and your individual stats as most individuals that had surgery did not have a psa of 47 and their experience has little bearing on your situation.
Good luck
JohnT
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Worried Guy
Veteran Member
Joined : Jul 2009
Posts : 3790
Posted 6/4/2011 5:51 AM (GMT -8)
Hey Startech,

Welcome to HealingWell.

Before I can give any advice, I need to know some specifics:
Dobsonian, Newtonian, Apo Refractor, Schmidt-Cassegrain ?
6", 8", 10", ...
Alt azi, equatorial, or full Go To?
CCD element size and grid?
Live image stacking or post processing?
Can you split Trapezium?

How can you expect useful information without the details man! smilewinkgrin

You can see by my signature I selected surgery. Based upon my PSA of 23, by many, I was considered over the line for a single treatment. Radiation after surgery was strongly suggested. I decided to wait until "the last minute", typically 18 weeks, before agreeing to radiation. I was incontinent and had ED and hoped I would be fine by the deadline. I let the time window pass.
Did I make the right decision? It has been almost 2 years. My PSA is <0.01. I had the incontinence fixed with sling surgery. And if I get up the nerve to use Trimix, I can get up.

Here's my uneducated advice. Life will be different. But, if you keep your sense of humor intact you will do well.

Clear skies,
Jeff (Packing 6 inches of 1/12 wave Newtonian optics.)
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compiler
Veteran Member
Joined : Nov 2009
Posts : 7709
Posted 6/4/2011 6:14 AM (GMT -8)
In case you don't understand what Jeff is saying, keep in mind that his humor is an acquired taste.

Mel

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DaSlink
Veteran Member
Joined : Feb 2011
Posts : 713
Posted 6/4/2011 9:33 AM (GMT -8)
Jeff,if I didn't know better, that sounds like a huge amount of DATA!
Welcome Star! i too was dx with a high Psa number so out it came. I did RRP and so far so good. Use the doc you trust the most and good luck.
Keep us informed ,and yes Jeff takes some getting used to. A bit of a smarty pants!!!!
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Fairwind
Veteran Member
Joined : Jul 2010
Posts : 4107
Posted 6/4/2011 9:41 AM (GMT -8)
Also keep in mind that while a PSA that high almost guarantees PC, it is by itself, a VERY poor predictor of the EXTENT of the PC...

While surgery may indeed be "a waste of time" at this point, it's not really a waste..It will remove the bulk of the tumor, giving future treatments much less cancer to deal with..It will also give your doctors the best possible indication of exactly how far the cancer has spread, removing much of the guesswork involved with other treatment methods...
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coxjajb
Regular Member
Joined : Nov 2008
Posts : 184
Posted 6/4/2011 10:06 AM (GMT -8)
Startech, I'm Located in San Antonio. The good news is that Urology San Antonio has a doctor that is considered one of the best in the country. I encourage you to include then as part of your research. PM me if you want to talk.
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Startech
Veteran Member
Joined : Jun 2011
Posts : 1154
Posted 6/4/2011 1:49 PM (GMT -8)

compiler said...
Star:
open vs. Robotic is not even an important decision.

Finding the best surgeon is. Experience counts here. I did a lot of research and chose the surgeon first. He happened to be a robotic surgeon. If his methodology was open surgery, that would have been fine, too.

If money/insurance is not an issue, are you near MD Anderson?

Mel

That makes a lot of sense Mel, thx. I am about 3 hours away from MDA and am going to look in to them before I finalize my plan.

Thanks rcroller and Vette.

cantexplain said...
As you explore your options, might I point out that you should still get that colonoscopy under your belt before too long?

I agree and plan to, thx.

Jazzman- Thanks for the input and glad you are doing good. I am considering the RP rather than the radiation for another reason also (not definate yet) and that is this darn enlarged prostate has caused me major probs almost all of my life. Frankly, I am tired of not being able to pee freely at will, painful urination and ejaculation, the constant incontinence, lower back pain, getting up in the middle of the nite and so on. Hang tough, what is done is done. Dont look back, just keep steaming forward.

(JStars here ... having 'Star' in a name is always a good thing).
Yes sir! I agree with everything in your post and am leaning heavily on going that direction. Yeah, the one doctor who wanted to do robotic said they may have to give me hormones to shrink it first. The whole time I was thinking "FAT CHANCE!". I dont want to delay this and I darn sure dont want to deal with the side effects of hormones unnecessarily.


John T said...
Stars,
At this time I would be concerned about the high psa. Your prostate size accounts for about 7 points and the pc they discovered about 4 points. This leaves about 36 points of psa that is unexplained. I would see a medical oncologist specializing in PC and get his opinion before you decide on anything. I would also highly recommend a PAP test and also a circulating tumor test as your high psa is indicative that the PC may already have escaped the capsul and surgery would not be effective.
Good luck and learn all you can about your particular situation and your individual stats as most individuals that had surgery did not have a psa of 47 and their experience has little bearing on your situation.
Good luck
JohnT

Good point, none of the DRs tried to explain the high psa. They both said best guess on capsule breach and that it could only be determined during surgery. Is that not correct? Either way, I am still leaning towards surgery because that would be less cancer to fight and looking forward to the ease of urinating again.

LOL Worried Guy! Thanks for the welcome and yeah...laughter is the best medicine. There's no clouds in my coffee!!!

Gotcha Mel and DaSlink! Thanks

Agreed Fairwind.

coxjajb-I bet your talking about Dr Kella, right? I think he only does robotic and I am leaning towards open. Thanks and glad to see you are doing well.

Post Edited (Startech) : 6/4/2011 3:57:08 PM (GMT-6)

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Worried Guy
Veteran Member
Joined : Jul 2009
Posts : 3790
Posted 6/4/2011 3:48 PM (GMT -8)
Hey Startech,

I couldn't resist. I figured with "Star" in your name, you had to be a fellow Astro geek. It's kind of a cult with it's own language. There aren't many places where you can say "Hey, let's go to Lou's place tonight and check out his 10" Dobber." without being suspected of being some kind of sex offender.

It's ok if you didn't understand anything I wrote before the smiley face. Not many people do.
The info you really needed to hear was after that.

Good luck to you.

Jeff (Always willing to show my 6 incher to anyone interested. :-) )
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knotreel
Veteran Member
Joined : Jan 2006
Posts : 674
Posted 6/4/2011 6:55 PM (GMT -8)
Well first off, my condolences for being here. Living in an RV! That could be helpful in whatever treatment you choose. If I were living in an RV I think I would drive the thing over to Houston, Say MDA and get another opinion if you haven't done this yet. Your numbers do not look real scary but I think they warrant upping the game a bit and get a third opinion. You are fairly young to have this diesese and I would, if it were me, hit this thing with the best thing I could on the first try. There are many many places that can successfully treat PCa but I doubt that you could do better than MDA. I wasn't treated at MDA as i then thought I didn't need the big guns but I didn't know anything then. However, I did need a "next round" for incontinence and that was done at the Texas Medical center, Methodist.
Whatever you decide, I wish you the best outcome.
Ron
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medved
Veteran Member
Joined : Nov 2009
Posts : 1337
Posted 6/4/2011 7:20 PM (GMT -8)
Hey star -- here's my suggestion, for whatever it's worth: try to make a day long appointment at md Anderson where you see a urologist, a radiation onologist and a Medical oncologist. All three can have valuable input. For medical oncologist, maybe you can see choristopher logothetis. You may be able to get a consensus recommendation. Best wishes.
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Startech
Veteran Member
Joined : Jun 2011
Posts : 1154
Posted 6/6/2011 3:06 PM (GMT -8)
Hey Jeff, thanks. But I gotta be honest and say that I am not much of a baseball fan. I truly like stars and used to live in a neighborhood where all of the streets were named after stars. There were no street lights and lights after dark were discouraged for star gazing. Funny thing now, is I cant remember the name of the neighborhood right now, LOL.

Looking in to MDA tomorrow to help finalize my decision.

Thanks everyone.
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