Starting my journey

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keysailfisher
Regular Member


Date Joined Dec 2009
Total Posts : 347
   Posted 12/9/2009 4:49 PM (GMT -6)   
Started with the physical, doctor said the left side felt firm. Referred me to the urologist he did the biopsy. I don't have all the numbers, no paper work don't remember much of what he told me after he told me what i have. I do remember that it was 3+4=7 gleason, psa at time of physical 3.09. Had bone scan and lower ct today. Of course you guys know the emotions you go through. Urologist wants to take out the left side with the da Vinci. Been sitting here reading this forum for 2 hours thanks for being here. I go back to see urologist on 12/16.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/9/2009 4:55 PM (GMT -6)   
Welcome to HW, keysailfisher. Its too bad you need to be here, but glad you found us. Sounds like you are just now getting a hold of the reality that you have prostate cancer.

When you get some more data, please set up a signature at the bottom, by going to the "Control Panel" at the top of the screen. It will help others understand where you are at presently.

You will be on an emotional roller coaster for some time. So take your time, hold your breath, and start really thinking about how you want to deal with this. Even in your situation, it doesnt require immediate action. Make sure you understand all your options, both with surgical approaches and with radiation options.

Please keep us well posted, and ask as many questions as you wish. No such thing as a dumb question here.

We are with you.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys ,cath #8 33 days, Cath #9 in 35 days, 12/7/9 - Cath #10 in place


tremona
New Member


Date Joined Dec 2009
Total Posts : 4
   Posted 12/9/2009 5:08 PM (GMT -6)   
hi keysailfisher
good luck when you see urologist on 12/16 you look like you are about the same stage as myself.
i also will be undertaking surgery but on 1/2/2010 time goes slowly in the uk.
i was offered radical prostatectomy, radiation therapy or brachytherapy but was steered towards surgery as (this is the standard treatment)
today received a telephone call and asked if i would consider keyhole surgery dont know if this is da vinci as i am awaiting a meeting with the surgeon have you been offered these treatments as i have read the reports but making the correct decision is quite daunting
any way good luck

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 12/9/2009 6:06 PM (GMT -6)   

Key:

 

Good luck to you. I got the bad news exactly one week ago. I had my physical last August, which was really the start of this nightmare.

 

Do a search and read my posts. You will certainly see the panic I was in.

 

(Still am, but knowledge tempers it a bit!)

 

Mel

 

Mel


63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.
 
History of BPH/prostatitis.
 
PCA-3 test: 75.9 (bad news, guaranteeing I have to do....):
 
Biopsy on 11/30/09
 
Biopsy Report—Prostate Cancer

5 out of 12 positive

Gleason 4+3. More specifically:

2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:

2 cores are 4+3 (5%)--

1 core 3+4 (30%)

no peri-neural invasion

prostate is 45 grams

Stage: T1C

 Latest: Have set up an appointment at Umich with surgeon, radiation guy, general medical oncologist on Monday, 12/14. Trying to also set up appointment with Dr. Menon at Ford Hospital. Looking at another reading of the slides.


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1100
   Posted 12/9/2009 6:27 PM (GMT -6)   

Keysailfisher -

Don't allow your urologist to talk you into a quick surgery before you learn some more and carefully explore your alternatives.   You have time to learn about the treatment options and make the best decision.

I don't want to overload you with information, but I will make a few suggestions:

First, ask your urologist to send your biopsy slides to one of the few pathologists in the United States who have particular expertise in reading prostate biopsy slides, for a "second opinion" on the Gleason score.  These would include Dr. Epstein at Johns Hopkins or Dr. Bostwick in Virginia.  As you will learn, the Gleason score is important in determining your treatment options, so you want to make sure you get the right Gleason score.  A second opinion is very useful in that regard.

Second, buy a book or two to learn more.  You could try Dr. Patrick Walsh's Guide to Surviving Prostate Cancer  or  Dr. Strum's A Primer on Prostate Cancer: The Empowered Patient's Guide.  There are others, but these are two good ones.

Third, don't make any treatment decisions without at least talking with a urologist and a radiation oncologist, so you can get both perspectives.  This will help you make the treatment decision that is best for you. 

Fourth, when you decide on a treatment, make sure the doctor you allow to do your treatment has enormous experience.  That may be the urologist you are currently seeing.  But it may not be.  This is one area of medicine where outcomes can be very much related to the experience of the treating doctor, so you want someone with a ton of experience. 

Best wishes. 

 


Age 45.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5
 


defender3
Regular Member


Date Joined Nov 2009
Total Posts : 98
   Posted 12/9/2009 6:45 PM (GMT -6)   
Welcome aboard Key. Sorry to hear you had to join the club, but there's no better place for some great advice and honest discussion. Take your time and look through some of the threads so you can get a feel for the PCa journey. I'd echo what some of the Vets have already stated - try to stay calm and take your time to do your research so you can make the decision that's right for you. Remember that you also need to be your own best advocate and to take control of the process.

Cheers.

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 12/9/2009 7:27 PM (GMT -6)   
Welcome key.
A little firm?! All my life I thought "firm" was good. Abs, butt, breasts, ... and then my Uro told me that was bad. One side of my walnut was firm too. They ended up taking the whole thing. But don't let that scare you.
You found a great site. Full of info. Sit back with a coffee and enjoy. Pretend none of this is happening to you. You're only here because you are curious. Yeah, Curious, That's the ticket!

I'm sorry you are here and hope none of this applies to you. But if it does, know that you have found some of the most supportive and caring guys on the planet.

Good luck to you.
Jeff

When you get a chance, fill out a signature. It really makes a difference if you need specific advice.
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/27 2 months: Still 3 pads per day.
11/14 4 month: Still 3 pads per day. 420ml/day, 91 um leak. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 6051
   Posted 12/9/2009 7:54 PM (GMT -6)   
Seems odd to me and not sure why others haven't mentioned it, but I never heard of just taking 1 side of prostate. If I'm wrong It will be pointed out.
age 66 First psa 4/17/09 psa 8.3, 7/27/09 psa 8.1
8/12/09 biopsy 6 out of 12 pos 2-70%, rest <5% 3+3
10/19/09 open rrp U of W Medical Center, left bundle spared
10/30/09 catheter out. continent from the jump.
pathology- prostate confined, only thing positive was the report.everything else negative
11% of prostate affected. gleason 3+4, I suppose thats a negative
After reading pathology myself, gleason was 4+3 with tertiary 5. That is a negative, but I am a positive !!
Ed an issue but keeping the blood flowing with the osbon pump


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2460
   Posted 12/9/2009 8:04 PM (GMT -6)   
keysailfisher,
Sorry that you had to be on this forum but hope that you can find the information and encouragement that we all need on this journey. Once you get you biopsy results, please include them along with your age in your signature. Learn as much as you can and talk to several doctors (Oncologist, radiologists, urologist) before making a decision on how to proceed. Goo+d luck.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/9/2009 8:15 PM (GMT -6)   
ON BEHALF OF :Medved, Ohio-State, Ed C.,Defender,logoslidat, tremona, complier and David(Purg), et al.....in the house on PCa.

HI THERE NEIGHBOR FROM THE FRONT PORCH OF H.W. come on in sit at the table awhile, got some stories to tell you....believe this....PCa is "this aint no party, this aint no disco, this aint no foolin around. " (that was a song track if you missed it!)

It's good in here, even when we have friendly pie fights. (LOL)smilewinkgrin

keysailfisher
Regular Member


Date Joined Dec 2009
Total Posts : 347
   Posted 12/9/2009 9:40 PM (GMT -6)   
Thanks for all of the support. I've done nothing but read about PCa for solid week. I want to know everything i can Before, during, and after. I personally don't want radiation for my own  reason's, i'm pretty sure it had something to do with my father passing away. He also had PCa many years ago he did hormone treatment, don't know if it helped because he also had throat and gum cancer to. My grandfather on my mom's side also had PCa, i get it from both sides. I'm glad i found this place i'm not one to talf much about personal things in person if that makes since. I will update when i know something.

 


age 45
3+4=7
psa 3.09 at time of physical
Biopsy done 12/9


Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 664
   Posted 12/9/2009 9:46 PM (GMT -6)   
welcome,  best of luck to you...  Your in the  best place. 
Hero
Age 51, PSA 08/31/2009= 6.8, DRE Neg.
Biopsy 9/24/09 =10 of 12 positive. Gleason 6. 75% of one core.
da Vinci at Wash U, Barnes on 11/02/09
Pathology Changed Gleason to 4 + 3 = 7. Gleason 7 present in all 4 quadrants
All(4)periprostatic Lymph Nodes Negative, All(10)pelvic Lymph Nodes negative
Seminal Vesicles tumor free. No prostate extension


NewspaperLover
Regular Member


Date Joined Sep 2009
Total Posts : 311
   Posted 12/9/2009 10:05 PM (GMT -6)   

Hi Keysailfisher,

Sorry that you have to go through this.  I had several difficult months sorting things out (meetings with 3 surgeons, one radiation oncologist, and one medical oncologist) , before I settled on "Dr. DaVinci" on November 5th.  My apprehension was great going in as all the surgeons I consulted (three) indicated that they would take a nerve bundle because of the location of the cancer.  My experience since November 5th, however, has been better than I had hoped.  No incontinence (stopped pads after three days), and I am just starting to "experiment" with the ED issue.  I have learned in the past week or so that you can achieve orgasim without a full erection, which is a start after five weeks out of surgery, and a whole lot better than canned corn beef.  In other words, as bad as it seems when first diagnosed, so far it has actually turned out OK.  Not the way it was before, but OK and cancer free (hopefully!)  is something.  Best of luck. 

Of all the information I reviewed while considering my course of action (and also consulting three surgeons, a radiation oncologist, and a general medical oncologist) the referenced study and article below from the New England Journal of Medicine was by far the most helpful to me.

 

The study followed 1200+ men and their partners for two years.  Interviews were conducted before surgery, and at 2, 6, 12, and 24 months.  Respondents were asked to guage their "degree of satisfaction" with "Changes in Quality of Life After Primary Care Treatment" in five areas, including Sexual Satisfaction and Urinary Incontinence.  The results are graphed out nicely in Figure 1 in the article referenced below;  you can keep clicking on Figure 1 it to get it to readable size.

 

I found the results more than interesting, and not that surprising from what I had learned anecdotally on this Board and other locations. 

 

For example, the men undergoing Prostatectomy were divided into Nerve-Sparing and Non- Nerve Sparing groups.  After two years, 40% of the Nerve-Sparing group reported they were sexually satisfied; only around 20% of the Non-Sparing group reported satisfaction.  The two groups were much closer on satisfaction levels with urinary continenece, roughly 80% and 70% were satisfied.

 

My personal choices, because of my situation, came down to Non- Nerve Sparing Prostatectomy (one bundle removed)  or a combination of Radiotherapy + NHT (hormones) for six months.  Surprisingly (at least to me), the Radiotherapy + NHT group reported about the same level of sexual satisfaction as the Non- Nerve Sparing prostatactomy group (roughly 20%) after two years.  That helped tilt things for me towards surgery as I decided radiation had its own problems, I was tired of dealing with enlarged prostate problems, and either way the sexual  recovery part was going to be a big issue.  Better for my wife and I to  know before hand.  The good news, for me, is that so far the continence control challenge has gone better than I could have hoped.

 

Well, here is the article.  I found, and still find, the data fascinating if not exactly what I would have liked.

 

Here is the artilce from March 2008, New England Journal of Medicne.

 

http://content.nejm.org/cgi/content/full/358/12/1250

 

 

NewsPaper Lover

 

Age 66

PSA:  6.0  on 07/31/09 having risen from 4.2 on 12/02/08.  Free PSA 23.5%.Other PSA History: 4.3 on 05/01/08; 3.3 on 11/15/07; 3.1 on 05/20/07; 4.0 on 11/30/06; 3.40 on 09/01/05.

 

Biopsy:  09/04/09  13 snips;  two positive.  Right Mid  4+3 = 7 and 15% of the total volume.   Right Lateral Mid 4+3 = 7 and 20% of the total volume.

 

DaVinci robotic surgery:  11/05/09.  Post surgery pathology:  margins clean, no invasion of seminal vessels, no upgrade of the Gleason scores, no evidence of cancer outside the prostate capsule.

 

Cathether removed one week later:  11/12/09.  Very minor one or two dribbles for two days.  Stopped using pads after three days.  No pads or incontinence at night.  After years of an enlarged gland, nice to get a solid stream. 

 

Future:  first post- surgery PSA scheduled 02/02/10.  That will be an important date.  Hope I join the 0.00 club?

 

 

 

 

 


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 12/9/2009 10:24 PM (GMT -6)   
Along with the investigation of PC options, also be sure you spend as much quality time with the those you love.

My wife and I took a trip down to a bed and breakfast in Amish country. I think of it all the time as I work on this ED thing. Your significant other will be an important part of this journey as well.

This is not a death sentence, and some good can come from it for you and the ones you love. You can learn to appreciate each like you never have before.
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


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 12/9/2009 11:02 PM (GMT -6)   
Absolutely !

The Red Barn B & B. I heartily recommend it. Owned by ex-Amish couple.
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

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