Newly Diagnosed

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Jazzman1
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Date Joined Sep 2010
Total Posts : 1163
   Posted 9/14/2010 9:03 PM (GMT -6)   
At age 55 I was recently diagnosed with prostate cancer. My urologist (a department chair at a center of excellence) tells me I'm a Gleason 6, and he went through my various options with me. My PSA went from about 2.6 to 4.1 in the last year. I'm scrambling to educate myself on this mind numbing subject, and it's good to have this forum as a resource. It's remarkable how many unselfish people are willing to share their knowledge.

I'm unsure of how to proceed, but I know I have some options other than the open surgery my urologist recommends. I'll be seeing a general oncologist next week to get his perspective. I've also read several books, including the Walsh book, and scoured the internet for information.

Based on what I know so far, I'm thinking there's a good chance I'll end up having surgery. However, all things being equal, I'd rather have the robotic laparoscopic surgery than open surgery. Can anybody tell me who is the superstar surgeon with the Da Vinci machine in Cleveland? There must be somebody. Also, any other helpful information would be appreciated, including how to tamp down the stress. This whole cancer thing definitely ain't for sissies.

Thanks.

proscapt
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Date Joined Aug 2010
Total Posts : 644
   Posted 9/14/2010 9:25 PM (GMT -6)   
Hi, Jazzman - welcome to the club no one wants to join. In my area, the main cancer hospital had a couple of discussion groups going, one for cancer patients in general and one for prostate cancer in particular. They met every other week with a professional facilitator and 6-10 patients. I found that very helpful in tamping down the stress and anxiety.

If you can post more about your situation including any other tests you've done and longer term PSA trends, people here may be able to give you more specific advice.

best wishes...
DX at age 54 12/2009
Initial clinical profile: PSA 5.6, DRE-, high pre-op PSAV. Clinical stage T1c
Biopsy: Gleason 3+4 with PNI / 6 of 14 cores + / 10% of total length + / worst 45% +
TX: Robotic assisted RP 2/2010
Pathology: pT2cNx / Gleason 3+4 / PNI+ / SM- / SV- / EPE- / Tumor vol 7% / vol 40cc / 63 Grams
PSA - post-op 0.01

Fairwind
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Date Joined Jul 2010
Total Posts : 3892
   Posted 9/14/2010 9:32 PM (GMT -6)   
Obtain a copy of your biopsy report and read it carefully. Many feel it is worthwhile to have a second, expert, lab take a look at the slides, but if you are already being treated at a "Center Of Excellence" their lab might be good enough...Little details like how many cores were positive and what percentage of the core sample was cancerous can make a difference in your treatment choices..

Consulting with a Medical Oncologist was a smart move..He can act as a disinterested third party in the surgery vs radiation question. He has seen it all, he is an expert, so his insights are very valuable..Be sure to bring that pathology report with you...

If you have to have cancer, PC, Gleason 6 was a good choice! Very few men die from that variety regardless of how they treat it.. So for you, it's basically choose your side effects..I had robotic surgery 11 days ago and I'm almost completely recovered.. Others have more difficult recoveries. Same holds true for radiation..

So take your time and do your homework and you will do just fine...
Age 68.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA age 66 9.0 DRE "normal", 2ed biopsy, negative, BPH, Proscar
PSA at age 67 4.5 DRE "normal"
PSA at age 68 7.0 third biopsy positive, 4 out of 12, G6,7, 9
RRP performed Sept 3 2010

John T
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Date Joined Nov 2008
Total Posts : 4269
   Posted 9/14/2010 9:38 PM (GMT -6)   
Jazzman,
Review all options with an open mind; you have plenty of time. It's god to get a 2nd opinion from an oncologst.
To get a good perspective of treatment options read Walsh's book as it gives a surgical perspective. Michael Dattoli's book, Brachytherapy and IMRT gives a radiologist's perspective. Stephen Strum's book, Primer on Prostate Cancer is an excellent book in how the disease actually works and manifests itself. Mark Scholz's "Invasion of the Prostate Snatchers" gives a good idea how AS works and goes into the side affects of all treatments that you have to be aware of before making decisions.
For your G6 cancer all treatments have the same cure rate so you will have to make your decison based on other factors.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Jazzman1
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Date Joined Sep 2010
Total Posts : 1163
   Posted 9/14/2010 9:51 PM (GMT -6)   
I ordered the pathology report, but the hospital is dragging their feet getting it to me. Maybe they'll have a pill for this by the time I get the pathology, although I'm thinking that won't be available until the week after I have the surgery. When I first discussed the pathology with my urologist, I didn't know enough to ask questions like how many cores were positive. I hope to have the details in hand soon. I'll post 'em when I know 'em. At least I'm learning what I need to know. The more I find out, the more I realize how mind boggling this all is.

I'll keep reading, JohnT, and I'll check out the books you recommend. I've gone through much of the Walsh book already. I'll also try to keep an open mind, and try to keep that open mind from freaking.

I'm still stumped on this business of figuring out who the best docs are, but I guess there's no easy way to figure that out. The people who set appointments at the Cleveland Clinic say, "they're all good." Sigh...

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3892
   Posted 9/14/2010 10:32 PM (GMT -6)   
Your U-docs secretary can make a copy of the biopsy report and hand it to you. Your primary physician should have a copy too. Everybody gets one except you...

It's Jonathon, right?

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/14/2010 10:39 PM (GMT -6)   
hello and welcome, jazz.

if you have a true gleason 6, you should have all treatment possibilities open to you. when you get your path report, if you could share some data with us, it would help us understand your situation a bit better. Even AS might work for you, not enough info to determine at this point. If you did go open Surgery, that was my route along with some others here. As much as the Robot Centers promote the wonder of their machines, some of the myths against open Surgery just aren't true. I.E., the one big incision isn't all that big these days, often is less in length then all the smaller ones for the robot, magnification - even an open Surgery the dr. has ample magnification, blood loss - very rare in our time and age. Advantage - some surgeons readily agree that having that hands on the goods approach - tactile feel, can't be replaced by a robot with the surgeon at a console. Hospital time varies, I needed 4 days, we have some open guys that went home in 2.

The Walsh Book is a good starting primer. The other books that John suggested would be great too

Good luck and keep us posted

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

Im_Patient
Veteran Member


Date Joined Aug 2009
Total Posts : 670
   Posted 9/14/2010 10:43 PM (GMT -6)   
Jazzman, the best way to tamp down the stress: it goes way down as soon as you decide your course of treatment. It is amazing how you can finally get a good night's rest then. There's no hurry to make a decision from the PCa perspective, but the sooner you decide, the sooner you will be at peace about it all. At least that's my take.
Wishing you the best
Jeff
Gleason,3+4;PSA,7.9,Nerve-sparing RRP,03/2008(Age 48 then),confirmed 3+4 Gleason,pT2c, 60g, neg margins; perineural & lymphatic invasion present;3 lymph nodes removed,clear seminal vesicle invasion:absent;Gleason 4 was 5-10%; PSA <0.1 until Oct 09:0.1; retest <0.1; scans clear;monthly results from Jan 2010:0.2,0.2,0.17,0.17,0.24,0.31,0.29,0.41, IGRT SRT started 8/4/2010, PSA@5 weeks into SRT:0.17

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 9/14/2010 10:51 PM (GMT -6)   
Jazzman, sorry you've got to be here, but this is a great place to be.

While cancer is cancer, and PCa can be a rascal, base line is that Gleason 6 isn't a panic situation. When I was thought to be Gleason 6 one of my doctors told me, "you could die of this --- but you'd have to work awfuly hard to do it."

He also told me, "Doctors are going to fight to get their hands on you ---- you'll make their statistics look good.'

Take a deep breath, take your time (you have it) and figure out what treatment option makes the most sense to you. Then, go for it, and chances are you'll never be bothered by it again. There are no gold plated guarantees in life, but your friends who haven't been diagnosed, and aren't going to be treated, are likely in far more danger from PCa than you will be after you're treated.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

Fairwind
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Date Joined Jul 2010
Total Posts : 3892
   Posted 9/14/2010 11:05 PM (GMT -6)   
If you REALLY have a strong stomach, you can visit UTube and view BOTH types of surgery in all their glory...

In one key area, where the urethra is stitched back onto the bladder neck (and they pull your pecker back about a half inch) the Robot has no equal..It has a special fixture to position the parts and sew them together perfectly, a nice water-tight seal..Only the best open surgeons can match it. It makes recovery of continence MUCH quicker and more certain..I am continent now, 24 hours after catheter out..
Age 68.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA age 66 9.0 DRE "normal", 2ed biopsy, negative, BPH, Proscar
PSA at age 67 4.5 DRE "normal"
PSA at age 68 7.0 third biopsy positive, 4 out of 12, G6,7, 9
RRP performed Sept 3 2010

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/14/2010 11:15 PM (GMT -6)   
fairwind,

once the prostate is removed, the bladder is then more movable, you really don't lose any length, at that critical juncture - the bladder neck to urertha, the bladder is moved forward to make the connection. in the flacid mode, the penis appears retracted more than before surgery. i am one of the fortunate few that had zero ED, and while the Wee one looks shorter flacid, its easily the same lenght as pre-surgery when errect.

also, you are very fortunate on being dry 24 hours after the cath out, it certainly can happen that way for some, but we have those with open surgery that have had that good fortune too. for those that know where all the studies are, there was one mentioned months ago, that was suggesting that incontinence issues may actually be worse for those that undertake robotic surgery. if anyone remembers this, post a link.
most experts feel the jury is out on that subject, but as robotic has been rapidly over taking open surgeries, there's a lot of data out there.

the bladder neck to urehtra juncture is the most complext part of the surgery, and thats where your surgeon's experience can shine. An open surgeon will say, that too tight is bad, too loose is bad, and being able to feel the "sewing" with their fingers, they can make adjustments for what they are seeing and feeling. Again, a debatable point, not trying to be dogmatic about it.


david in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

rhb47
Regular Member


Date Joined Mar 2010
Total Posts : 208
   Posted 9/15/2010 7:39 AM (GMT -6)   
Hi Jazz,

Welcome to the confusing world of PC where you will have to decide on your own treatment. Fortunately you found this site where there are a lot of people who have been thru it and can help you along. My husband was diagnosed as a gleason six 3/18/10 and just had surgery 8/9/10. We read everything we could and finally decided on robotic surgery. He is extremely happy with the results, but everyone is different and has different results. That's why it is very important to learn all you can, make your own decision and don't look back. More than likely, you're going to be fine.

Renee
Husband diagnosed 3/10
Age 56, PSA 4.7, free 7.6%

Biopsy 5 of 10 cores positve-all right side-25% to 57%
Gleason 6
DaVinci surgery with Dr. Vip Patel scheduled 8/9/10

Post Op: Gleason 3+4=7
Negative surgical margins and lymph nodes
No seminal vesicle and angiolymphaic invasion
perineural invasion present
Both nerve bundles spared

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 9/15/2010 7:59 AM (GMT -6)   
Please study all possibilities in PCa, do not be swayed by any one particular persons treatment. We should not be playing pep ralley ideas to new patients (banging the drum), if you do then also assume their future outcomes as a contributor (you might glory in the positive too, or wallo in the negative features). Especially anyone just out of there current treatment, usually highly biased and all high fives, they survived step one(great and that healing is still in process)....other steps come after those...sometimes the same persons have been seen to change their views on PCa occassionally down the line, which you wouldn't therefore know about. Seen such revelations in PCa over the years on forums.

Best to you in your decision. Read about all side effects in any treatment and how to prepare for dealing with treatments, thereafter.

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1163
   Posted 9/15/2010 10:40 AM (GMT -6)   
Wow. Lots of terrific responses. Thank you all so much. The caveats, ideas, reassurances and dire warnings are all helpful.
 
I gather that regardless of how they do the surgery, the bladder neck sphincter is pretty much toast when they're done. That leaves you with a single functioning urinary sphincter, which is why so many guys have incontinence issues, right?
 
Regarding open vs. laparoscopic surgery, my thinking is just that a laparscopic surgery must be a lot easier to recover from. And given the fact that I'm a G6 with a relatively not too out of hand PSA (4.11), a surgeon's ability to feel the lymph nodes and other tissue may not be such a critical thing.
 
Good points, though, about how the advantages of robotic surgery are probably being oversold. But then they've gotta pay for that machine somehow, don't they? Another good point about the open incision not being that big; my doc described about a three-inch incision. I know guys who had open surgery and say it wasn't that bad.  Maybe I'm just exaggerating the difference between recovering from open vs. laparoscopic surgery in my freaked out little mind.
 
I've seen the videos of both the open and laparoscopic surgeries (I'm not bothered by that stuff). It looks, though, like they do an awful lot of fast and fancy cauterizing in the robotic procedure. I wonder if the nerve bundles generally come out of that unscathed.
 
Thanks for the tip, Fairwind, about getting the path report directly from the urologist's office. I'll give that a shot, and yes, it is Jonathan.
 
All that said, I'm trying to go slow and think this through more broadly. I take the point about how making a treatment decision will help tamp down the stress. That makes lots of sense to me, so I don't want to drag my feet, but I will take some time and consider all options as objectively as I can. I'm hoping the general oncologist can bring some context to all this for me next week.
 
Zufus makes a good point about not being swayed too much by any one person's advocacy for a particular treatment. Not likely, given all the discordant voices out there. While they may be confusing, you can't accuse the people of this forum of groupthink.
 
Thanks for all the perspectives; it's all very helpful. I'm sure I'll sort this all out in time. I'll post more specifics on the pathology report when I get them.
 
 
 
 

compiler
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Date Joined Nov 2009
Total Posts : 7270
   Posted 9/15/2010 11:28 AM (GMT -6)   
A suggestion:
 
In addition to getting a hard copy of my reports (biopsy, pathology, and surgeon notes), I had them send it to me as an email attachment (.doc files). This has come in handy many times, allowing me to easily cut and paste information.
 
Mel
PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .
Biopsy 11/30/09. Gleason 4+3. Stage: T1C. Current Age: 64
Surgery: Dr. Menon @Ford Hospital, 1/26/10.
Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- in progress. First post-op PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. Next PSA late Sept.

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1163
   Posted 9/15/2010 12:54 PM (GMT -6)   
compiler said...
A suggestion:
 
In addition to getting a hard copy of my reports (biopsy, pathology, and surgeon notes), I had them send it to me as an email attachment (.doc files). This has come in handy many times, allowing me to easily cut and paste information.
 
That was my first request, but no dice. Amazingly, the Cleveland Clinic, which is so forward thinking in so many ways, demands that you fax them a signed release form before they'll snail mail you a hard copy, which they'll do when they get good and ready. I've been waiting for over a week since faxing them the release form.
 
They do have a system for letting you log in and see various test results, but I'm told that urology won't play along with that system. I can find out what my cholesterol was, but not my cancer score. When I asked the woman about emailing a PDF, she asked me what a PDF was.  rolleyes

Igor
New Member


Date Joined Jul 2010
Total Posts : 10
   Posted 9/15/2010 5:57 PM (GMT -6)   

Dear Jazzman1:

I was very stressed after by dignosis. I decided on a Radical Prostatectomy after getting a second opinion at a hospital that is part of the NCCN (National Comprehensive Cancer Network).  There is one in Ohio as follows:

The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute, Columbus, OH

The second opinion hospital asked to have the biopsy slides be sent to them.  I had to pay the doctor $20 to do this.  The 2nd opinion hospital determined that I was not a 4+4=8 Gleason grade but a 3+4=7 Gleason Grade.  The pathology report after the prostate was removed confirmed it was a 3+4=7.

As far as stress is concerned, two things helped me.  I went to a prostate cancer group session and felt better talking to others who were in the same situation.  Several had recent surgery and it was reassuring that there is life after surgery.  Second, I read several books about Prostate Cancer.  The best one is the Prostate Book by Dr Peter Scardino.

Good luck and keep us informed of your progress. 

Steve (Igor)

 

 


9/09 PSA: 3.6, no biopsy
dx age 59 a: 4 /15/10 PSA 4.3 biopsy 2 out of 12 positive, Glsn 4+4=8
bone scan, pelvic cat scan negative
second opinion: 5/16/2010 PSA 4.3 Glsn 3+4=7
MRI prostate no spread outside prostate
RP:Sloan Kettrg- 6/14/10, pathology report: no spread o/s capsule, sem vesicles, blad neck, nerves, or lymph nodes. neg margins T2b
6 wk PSA 7/26/10: undetectable-less than .05
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