New old/youngish guy in Chicago.

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wigged-out
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 1/5/2010 4:15 PM (GMT -6)   
Add me to the club. And I hope this one has a happy hour sometime. I think it does.

I've been poring through these forums for a while, and it's taken me a bit of nerve to post my first post.

Mainly I wanted to make sure that this forum was NOT inhabited by drug reps or pre-tend doctors, or anyone trying to sell me anything, and are people, well, like myself.

I'm one of those people that even if I send myself an email, I don't dare open it ;-}

I hope that people that are lurking, like I was, join in, especially if you are in the Chicago area. The more info the better.

So my story started with a routine visit to primary Dr. Overall health is fine, though a family history of colon cancer. As long as I can remember, I'd get up a bunch of times at night to pee. Even now, not to bothersome. In the morning, I pee alot to. I only drink two cups of coffee in the AM. I do treadmill 5 days a week, 40 minutes, 4mph, incline 5 deg.

The rest of my tale is in my signature. I look forward to getting to know you, probably on a more intimate basis than I could have imagined but that's good, because as the name implies...wigged out.

Many questions to come....

Best wishes.

Wigged-out
Age: 53- good health, physical anyway. Tinkle alot at night- 4-6x's

DRE 11/08- no lumps, just enlarged prostate

1st PSA, total- 11/08= 6.1

2nd PSA, total- 8/09= 6.6 Referred to Dr. J. Hoeksema @ Rush Univ. Med. Center/Chicago

Needle Biopsy 11/09- 12 samples. 11 OK. Right Lateral Mid- Adenocarcinoma Gleason score 3+3=6 9 involving 5% of specimen.
Second opinion scheduled 1/21/10 with Dr. Gregory Zagaja, Univ. of Chicago Med. Center


Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 372
   Posted 1/5/2010 4:24 PM (GMT -6)   
Welcome Wigged........a lot of guys, myself included, lurked long before they leaped on to this forum. Once you do, though, you're hooked---in a good way. Sorry you have to be here, but all you will find is support, info and a common theme; not snake oil salesmen. Guys will chime in soon, and the ones in the midwest area can give you some local advice as to experience with specialists, hospitals, etc. We're all here for each other, and you will be able to help others, as others help you. Your numbers (on first blush) don't look too bad at all. Stay tuned, strap yourself in, and join the club nobody is knocking down the door to join----but again, welcome!
 
Arnie in DE
Age 56 (biopsy & surgery)
PSA at Diagnosis-3.9
Biposy 8/19/08--4 of 12 cores positive; 5% involvement, Gleason 6 (3+3)
 
Surgery 1/26/09-DaVinci Robotic Prostatectomy at Presbyterian Medical Center/HUP-Phila, PA
Dr. David Lee
 
Pathology Report- Adenocarcinoma, no capsular involvement, seminal vesicles clear, lymph nodes clear, negative margins, Gleason 7 (3+4), Stage T2C, NO MX, Prostate 61.8 grams, gland involvement 2-10%
 
Catheter removed after 8 days, totally dry at 3 months. ED issues continue, Viagra (via ADC) nightly (100mgs), VED use in earnest at 6 months. "Ball Park Frank" plumping at this point......ED at 10 months continues to improve, albeit slowly. Continued daily use of 100mg Viagra (ADC). Discontinued pump use; manual stimulation to varying states of erections; achieved penetratable erection on a couple of occasions
3 month PSA--<0.1
6 month PSA--<0.1
10 month PSA--<0.1


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 1/5/2010 4:26 PM (GMT -6)   
Hey Mr. Wigged,

Welcome to the club. Happy hour just got over, but we'll have another one tomorrow sometime.

Sounds like you are a qualified member. Fortunately, your numbers look pretty good, so you have a complete list of options available to you, from Active Surveliance, to seed implants, to surgery.

So, take deep breath, and let it out slowly. if you are still wigged out, do it again.

Then, begin to learn all you can. At the top of this forum page is a post with all kinds of websites. There are good books you can buy, and there are a lot of guys on here with a lot of experience who will help you along the way too. Ask anything you can think of. We aren't modest, we aren't shy, and collectively, we have experienced most everything you will.

Good luck on your journey.

Goodlife
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


wigged-out
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 1/5/2010 4:48 PM (GMT -6)   
Thanks fellas.

The needle biopsy was not fun. I used to dread going in for colonoscopies, but I'd do eight of those, to one of the needle things. Dr. Hoeksema seems like a really nice guy, and knowledgeable about all things Number One. He wanted to know if he should stop after sample 6 or 7, but I said I want my moneys worth and got all 12. he said I did very well during the test, but that I wouldn't shut up. I think he meant that jokingly. If not I'd understand.

My wife took me home, and I stayed in bed watching all these bad court-room tv shows. Watching those makes you feel better about yourself.

Getting the call about the lab results was sort of a blur. I know I was on the phone but just not there....my wife and I went in to the doc's office for a consult. Four options- Surgery, radiation, seeds, active surveillance (which means another date with the Smith $ Wesson needle thing).

The Dr. sent me home with the Prostate Cancer book by a Dr. Walsh(?) from John-Hopkins. Read that cover to cover, then couldn't sleep for a few nights.

BTW- I have married the very best of the best. Being a nurse herself, that helps, and the fact that she can listen and comprehend while I am....just not there. She's really in this with me and seriously that makes me feel a whole lot better.

I am now going to post the first of my many questions.

Thanks.

W-O
Age: 53- good health, physical anyway. Tinkle alot at night- 4-6x's

DRE 11/08- no lumps, just enlarged prostate

1st PSA, total- 11/08= 6.1

2nd PSA, total- 8/09= 6.6 Referred to Dr. J. Hoeksema @ Rush Univ. Med. Center/Chicago

Needle Biopsy 11/09- 12 samples. 11 OK. Right Lateral Mid- Adenocarcinoma Gleason score 3+3=6 9 involving 5% of specimen.
Second opinion scheduled 1/21/10 with Dr. Gregory Zagaja, Univ. of Chicago Med. Center


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 1/5/2010 5:10 PM (GMT -6)   
Wigged
As you have seen, we are happy when people find us but unhappy that they have a reason to be here.

A lot of us hear Cancer and think Death. That is not the case with PC. You have lots of time and lots of choices. In fact, that is the curse of PC especially with your stats. By the way, biopsys can be done under heavier sedation than what you got, so don't let the fact that there might be more in your future be a deciding factor.

You have already started your due diligence by reading Walsh's book. If you look at the top of the forum you will find lots of other information sources. So, hang around, ask, and join in as you wish.

With reference to Happy Hour, there was a thread a couple of months ago that suggested that beer had anti-cancer properties. Feel free to start your own clinical trial. In fact there is a GFMPH movement. Good For Men's Prostate Health. As in --
I'm going out for a few drinks because it is GFMPH
It worked for me until my wife discovered that cleaning the basement was GFMPH
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 1/5/2010 9:30 PM (GMT -6)   
I'm in Chicago also, and I know that there are some excellent specialists, surgeons and medical facilities that'll handle whichever treatment option you eventually choose. All of this is scary at first.

Age:  60 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (1/2 light pads per day)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0; 4/09: 0.0; 9/09: 0.0

 


wigged-out
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 1/6/2010 10:21 AM (GMT -6)   
Thanks everyone.

Mavica- I may be in touch sooner or later. I hate Chicago winters....

Best wishes everyone.
Age: 53- good health, physical anyway. Tinkle alot at night- 4-6x's

DRE 11/08- no lumps, just enlarged prostate

1st PSA, total- 11/08= 6.1

2nd PSA, total- 8/09= 6.6 Referred to Dr. J. Hoeksema @ Rush Univ. Med. Center/Chicago

Needle Biopsy 11/09- 12 samples. 11 OK. Right Lateral Mid- Adenocarcinoma Gleason score 3+3=6 9 involving 5% of specimen. Prescribed Flomax for excessive peeing.
Second opinion scheduled 1/21/10 with Dr. Gregory Zagaja, Univ. of Chicago Med. Center


mljsher
New Member


Date Joined Jan 2010
Total Posts : 7
   Posted 1/6/2010 10:43 AM (GMT -6)   
Welcome to the club, Wigged. I know exactly how you feel. My uro called me on the phone with the news and then made me wait a week to see him about it. That was some week. I shed enough tears just out of fear to single-handedly end the drought here in New Mexico. Fortunately for me, that's the only thing he's done wrong so far. He was really good about the biopsy, I got valium and percocet an hour before-hand and he gave me a local for the procedure. And he was very compassionate and informative during the follow-up. I'm gonna go ahead and have the surgery, given my age and otherwise good health. Keep everyone posted with just about anything you want. As others have said, we're all here for each other.
Age 54
PSA 11/08 - 1.4
PSA 11/09 - 3.0
20 samples, 2 positive
both samples very tiny
Gleason 3+3 on both


Frank1205
Regular Member


Date Joined Feb 2008
Total Posts : 308
   Posted 1/6/2010 11:16 AM (GMT -6)   
Wigged-Out,
 
I am in the Chicago West Burbs.  Seems we have some similarities.
 
Important........
As you seek different opinions, schedule a procedure date at each you see.   You can always cancel, Docs don't mind at all.  The delay to get your treatment is based on the limited availability of operating rooms. So get on their schedules when you can no matter what place or treatment you choose.
 
I looked at some suburban community Hospitals, which may be just fine,  but I liked what the Downtown locations offered. Smaller Hosps just did not turn the numbers I liked.  I met with Dr. Adler at Northwestern,  what a great guy.  I have two close friends that used Dr. Z from UC and have nothing but good things to say.  I choose Arieh Shalhov, got a bad margin but no problem yet. Don't know anybody doing work at Rush but I here its a great hospital as well.
 
I choose the Robot and was in and out of the Hosp. next day.   My bad margin is all I came away with but coming up on 2 years I remain hopefull.
 
Contact me if you wish..
 
Frank
 
 
 
 
Currently 55, surgery at 54
Normal , 2004 Biospy negative - 2008 Biopsy positive (01-08-08)
10 cores, 1 positive and at 1% of that one core
PSA @ surgery 6 
Bone and Ct scans negative
clinicaly Staged at T1C - Gleason 3+3 = 6
Robotic Da Vinci performed March 27th, 2008, University of Chicago.
Catheter out in 7 days normaly expected leakage
Post Pathology T2C, Gleason 7, (3+4) 10 % of both portions of prostate
Seminal vessels clear, fat tissue clear, single positve margin at apex measuring less than 1/2mm. 
PSA Six week < 0.1 4 month PSA <.05 6 month PSA<0.01,9 month<0.01,12 month <.008, 18 month .010
Watching PSA @ 6 months for 2 years,  will do salvage radiation if necessary.
Fair to Good results with Viagra,  side effects are bothersome at times. Tried Levetra about the same as Viagra.  Tried Cialis, think I will stay with the Viagra at 50 mg.  Side effects worse at 100 mg.  


wigged-out
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 1/6/2010 11:25 AM (GMT -6)   
mljsher,

Yeah, next biopsy I'm going to request an entire pharmacy of sedatives/pain killers.
I have a question for you and others where I've seen this: your PSA doesn't seem to be elevated to much. In fact, I was reading anything below a 4 is considered normal. Am I missing something? I'd figure that if it was beyond a 4+, that's when the docs would consider biopsy.

Frank1205,

Thanks for your info. I was kind of wondering if anyone had heard of/used Dr. Zagaja at UC. I don't want to rush in and set up anything quite yet. We looked into Rush, and I think there is one guy doing droid surgery. IF I decided on the surgery, I'd opt for the robotic, but again thats a big if.

Thanks again.
Age: 53- good health, physical anyway. Tinkle alot at night- 4-6x's

DRE 11/08- no lumps, just enlarged prostate

1st PSA, total- 11/08= 6.1

2nd PSA, total- 8/09= 6.6 Referred to Dr. J. Hoeksema @ Rush Univ. Med. Center/Chicago

Needle Biopsy 11/09- 12 samples. 11 OK. Right Lateral Mid- Adenocarcinoma Gleason score 3+3=6 9 involving 5% of specimen. Prescribed Flomax for excessive peeing.
Second opinion scheduled 1/21/10 with Dr. Gregory Zagaja, Univ. of Chicago Med. Center


Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 372
   Posted 1/6/2010 11:33 AM (GMT -6)   

Wigged.........it's more about the rise of the PSA # over time rather than the absolute value at any given snapshot in time. In fact, the old clinical parameters of any PSA of <4.0 being OK has gone by the boards. For instance, mine moved from 2.4 to 3.1 in 6 months, and then from 3.1 to 3.9 in the next 6 months when I was diagnosed via biopsy. So my highest reading was 3.9. Interestingly, a re-check of the PSA 3 months after biopsy came in at 2.4!!-go figure. But I was already diagnosed, and not swayed by the possibility that it was heading the other way. You'll see other memebrs here who have been diagnosed at much lower numbers. Conversely, you can have higher PSA readings, and still not have PC--------that's why this crap shoot of a disease is so much fun.

Arnie in DE

 


Age 56 (biopsy & surgery)
PSA at Diagnosis-3.9
Biposy 8/19/08--4 of 12 cores positive; 5% involvement, Gleason 6 (3+3)
 
Surgery 1/26/09-DaVinci Robotic Prostatectomy at Presbyterian Medical Center/HUP-Phila, PA
Dr. David Lee
 
Pathology Report- Adenocarcinoma, no capsular involvement, seminal vesicles clear, lymph nodes clear, negative margins, Gleason 7 (3+4), Stage T2C, NO MX, Prostate 61.8 grams, gland involvement 2-10%
 
Catheter removed after 8 days, totally dry at 3 months. ED issues continue, Viagra (via ADC) nightly (100mgs), VED use in earnest at 6 months. "Ball Park Frank" plumping at this point......ED at 10 months continues to improve, albeit slowly. Continued daily use of 100mg Viagra (ADC). Discontinued pump use; manual stimulation to varying states of erections; achieved penetratable erection on a couple of occasions
3 month PSA--<0.1
6 month PSA--<0.1
10 month PSA--<0.1


wigged-out
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 1/6/2010 11:37 AM (GMT -6)   
Arnie,

Thanks. I think I need to start collecting PSA scores like some people collect stamps......
Age: 53- good health, physical anyway. Tinkle alot at night- 4-6x's

DRE 11/08- no lumps, just enlarged prostate

1st PSA, total- 11/08= 6.1

2nd PSA, total- 8/09= 6.6 Referred to Dr. J. Hoeksema @ Rush Univ. Med. Center/Chicago

Needle Biopsy 11/09- 12 samples. 11 OK. Right Lateral Mid- Adenocarcinoma Gleason score 3+3=6 9 involving 5% of specimen. Prescribed Flomax for excessive peeing.
Second opinion scheduled 1/21/10 with Dr. Gregory Zagaja, Univ. of Chicago Med. Center


Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 1/6/2010 12:18 PM (GMT -6)   
Hey Wig!

I see your numbers are real close to what mine were. I also just had BPH for a few years ... then the PSA started really climbing. (But was only from that little 5% hit -- go figger).

What's that about another BIOPSY?? I don't think so. You are all done with those now.

One thing to know about is if your BPH has enlarged your prostate much beyond 55-60cc then you won't be a candidate for seeds. (But I believe they can try to shrink er down with Proscar or other drugs).

Your doc should have gauged the size of your prostate when he did the biopsy so he should have those numbers (or they are on the report if he gave it to you).

Hang in there for the rest of the ride.

Jim
Age 58, 195lbs, 6'4", 57 at DX, PSA Aug2008 7 4 ... June2007 4.7 (BPH + LUTS)
Biopsy Nov2008 1 of 12 cores 5%, Gleason 3+3 - Sona showed size 140+ cc (110 grams post op).
02/03/09 open RRP surgery , Nerve sparing both sides, 1 day in hospital, Day 4 first BM,
Pathology Report: All margins clear - No Invasive spread - no change in Gleason score.
02/18/09 Cath out, passed a 1cm oblong STONE within hours.
03/06/09 Started Levitra@20mg / Viagra@100mg / (04/01) Cialis@20mg -- no real effect (thru 11/2009).
04/01/09, 07/07/09, 10/01/09 PSA <0.1 - Stone Was Oxalate stone -- X-ray no stones.
08/09 - started MUSE@1000mcg ... pump&plump - success(80-90%) (alpro ache).
09/09 @500mcg +pump&plump + 2 advil - success(80-90%) - (less Alpro ache).
10/09 TrimixGel (500/300/100mcg): 1st:60%, 2nd:(pump&plump) 60%, 3rd(added 500mcg muse):70-80% -- (no Alpro aches!) but none @ useful hardness!


JoeFL
Regular Member


Date Joined Oct 2009
Total Posts : 420
   Posted 1/6/2010 4:02 PM (GMT -6)   
Hi wigged,
 
If you have to be in this club, this is a great group of guys to help educate you on your options and to help alleviate some of your very normal fears. This site, along with other research I did, was invaluable in helping me make my treatment decision. Since I am relatively new myself, I don't have much to add to what you have seen so far....just wanted to reinforce that you have come to a great place to learn and ask questions from members who have had just about all the treatment options out there and can talk from actual experience. Best wishes on the journey....you have plenty of time to plot a course that you will be comfortable with.
 
Joe67
 
_______________________
 

Age -67 PSA - 4.5

Biopsy  (9/4/09) - Positive in 5 of 8 cores. In those 5 cores, 5 of 11 samples were positive. Gleason 3+3=6. Stage – T1C  Ct and Bone scans negative

 

BT performed on 12/11/09. 84 seeds of Palladium 103. Surgery at 7:30 - Home at 12:30 same day with no catheter. Side effects as expected -  some burning, frequency, urgency, blood in urine. (Blood in urine stopped after 1 week).  Resumed daily  1 ½ mile walk after 3 days.

 

BT will be followed with 25 IGRT treatments beginning in Feb. 


Highwheel
New Member


Date Joined Feb 2009
Total Posts : 13
   Posted 1/8/2010 6:06 AM (GMT -6)   
Hello Wigged,
I too lurk more than I post but the similarities between us in age, location, and my previous condition prompted me to respond. We are fortunate. Chicago offers lots of competent doctors and facilities.

This forum will provide a plethora of information and if you don't see an answer from a previous posting, you'll get a lot of responses if you post your question. My input to you is NOT to be wigged. Be concerned, know that you need to make some decisions about you're prostate's future, but also know that in your position you have choices, a lot of support, and the odds are in you favor for a positive outcome.

Cheers,
Highwheel
Highwheel,
Age at surgery - 52
PSA - 4.3, T1C

Biopsy - -11/17/08
2 of 8 cores positive

Gleason Score 3+3=6

da Vinci method surgery - 1/22/09
Rush Hospital with Dr. Latchemsetty
Results - Cancer confined, no margins
Continent - 2/11/09
ED - Not great before surgery, now helped through injections

Post-Op PSA Standings
June '09 - Not Detectable
Sep '09 - Not Detectable
Dec '09 - Not Detectable

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