Newly Diagnosed

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mirv
Regular Member


Date Joined Nov 2008
Total Posts : 30
   Posted 11/10/2008 2:53 AM (GMT -6)   
Hello Everyone,
I was just diagnosed with PC two days ago (Friday) and am going through a few changes as I attempt to internalize what I have.  It's quite a shock to the system!  I feel lucky to have stumbled onto this group in my attempt to find out more about PC, and you all seem like caring, friendly, supportive people.  I hope in time that I will have something positive to contribute to the group, and I want to thank all of you in advance for considering my posts.
 
Although I was Dx ed only Friday, I have been considering various modes of treatment since my biopsy 2 weeks ago and I am pretty sure that I want to undergo surgery, either robotic or open, to remove the prostate.  My URO is an excellent doc so far but he does maybe 20-25 surgeries a year (although for 25 some years) for a total of approx 500 so far.  I am wondering if that is enough to keep his skills sharp or should I look around for someone who does more of them on a regular basis?  Where could I go to find some high volume, high quality URO's?  I go back to my doc in 2 weeks to hear his recommendations, but after that I want to get a second opinion too, I'm just not sure who to see.  I live in Los Angeles county but would travel if necessary.
 
Any other suggestions or comments would be truly appreciated, as I'm on a pretty steep learning curve here and need all the input I can get to try to understand what's going on.......
 
Thank you all!!!!
Mark

Age     52
Dx      11-07-08
PSA    3.1
fPSA   26%
1 of 12 cores with 5% adenocarcinoma
11 of 12 cores clear
Gleason grade 3+3=6


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 11/10/2008 3:42 AM (GMT -6)   
Hi Mark,
Well, you don't have to travel far if what you desire is a great surgeon. My first advice to you is if you choose surgery the surgeon does matter. Two of the nations top surgeons are at City of Hope, and between them they have done over 3,000 surgeries. That's where I went, no complaints about my surgery experience. I live where my screen name implies so I did travel, though I had lots of family in that area.  Learn as much as you can about each treatment modality. Think real hard before you pull the trigger on your decision. You can't unring this bell. Your very low PSA, low Gleason, and very small tumor size, make your options vast. You will likely have ample time to decide, and if you decide to take it, monitor that PSA. You certainly have enough time to let this sink in a little. Welcome to the best site I have found on the web for caring compassionate support. Sty well and stay positive.

Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 

Post Edited (TC-LasVegas) : 11/10/2008 1:45:28 AM (GMT-7)


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 11/10/2008 9:01 AM (GMT -6)   
Hello Mirv, You have some good advice from the above people....Good luck to you and come back and share your story...Divo
Husband Pete
dx Jan 2001 age 67 gleason 4 + 3 PSA 16.5
seed implant and conformal radiation Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06
Fistula operation 2/07 MSK
Many cystoscopies and ER visits with strictures
catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/07
AUS Operation at MSK Sept 8. Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 11/10/2008 10:47 AM (GMT -6)   
Mark-
Welcome to HW! Please stick around and ask away in here! It looks like you have already received excellent advice and I echo the other posts. Your numbers look very favorable for a cure! Best wishes and keep us posted!
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Oct. 10, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 11/10/2008 10:58 AM (GMT -6)   
I tell everyone new here to take your time and learn the treatment options available, their side effects and the impact of all this on your lifestyle and family. There is no need to rush and remember there are no do overs. Knowledge is empowerment. Urologists will near always recommend surgery, that's what they do. While radiologists will near always recommend radiation. Please take that into account. Do get other opinions from other doctors. There's much to take into account. For example I first was leaning towards robotic surgery, then brachytherapy radiation. Finally I rejected both and went with a new clinical research study I'm very happy with and it had minimal effect on me and my life. But first and foremost DON"T RUSH TO CHOOSE A TREATMENT!!!!

When everything you soon will learn becomes overwhelming I suggest you take a week off away from all of it. Later when you decide take a few days off to reflect before making the final decision. Then once you do don't look back.
Diagnosed 10/08/07
Age: 58
3 of 12 @5%
Psa: 2.3
3+3=6
Size: 34g
T-2-A
 
2/22/08
3D Mapping Saturation Biopsy
1 of 45 @2%
Psa:2.1
3+3=6
28g after taking Avodart
Catheter for 1 day
Good Candidate for TFT
(Targeted Focal Therapy)
Cryosurgery(Ice Balls)
Clinical Research Study
 
4/22/08
TFT performed at University of Colorado
Medical Center at Denver Fitzsimmons Campus
Catheter for 4 days
Slight soreness for 2 weeks but afterward
life returns as normal
 
7/30/08
Psa: .32 
 


mirv
Regular Member


Date Joined Nov 2008
Total Posts : 30
   Posted 11/11/2008 2:49 PM (GMT -6)   

Hi All!

Thanks for all your replies!  I sure appreciate all your perspectives on PC and the best way to approach it---the more I read and listen the better off I am. 

Frankly, I'm thinking right now that I just want to get rid of this very soon while it is still in a relatively small state.  I really hate the thought of radiation and would rather save it for later if necessary.  Of course the crux of all this are the possible side effects, but if I am going to have to remove it at some point why not now before things get worse?  This is an ongoing thought process but I think this is the direction I am leaning toward.  My wife underwent a double masectomy 2 years ago after finding out she had the her-2 (spelling?) gene and  cancerous masses detected, and she (and I) are satisfied with outcome.  She understands the issues and is completely supportive of whatever decision I come to.

Tony:  I checked into City of Hope's program and they look top notch but after checking with them it turns out my HMO won't fund their treatment so I'm out of luck there.  I am probably going to have to undergo surgery at Torrance Memorial Center as that is where the HMO is based and contracted to, but I am still researching those aspects.

Selmer:  the URO doc told me that his decision to biopsy was based on the PSA score completely.  Anything over PSA 2.5 he said he would biopsy.  I wasn't keeping track of PSA at all up until recently as I was not even aware of the importance of it, but earlier this summer I had a 3.5 that was reduced to 3.1 as a result of a course of Cipro for 4 weeks, thus indicating a bout of prostatitus I suppose.  DRE was clear, nothing detected.  Prior years PSA I don't know, but when I got the latest PSA results, 3.1 and 26%, I thought they weren't too bad, of course, I was wrong........

Thanks everyone!

Mark

 


Age     52
Dx      11-07-08
PSA    3.1
fPSA   26%
1 of 12 cores with 5% adenocarcinoma
11 of 12 cores clear
Gleason grade 3+3=6


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 11/11/2008 3:16 PM (GMT -6)   
Mirv, you are doing the right thing! Ask, read, learn, then make the decision that is best for you and your family. Don't get too wraped up in the numbers game. One thing to understand is that most of the high number Doctors are at teaching hospitals. They do have a job to teach. Many of their surgeries are done under their names. But, there will probably be other Doctors involved. They will still be highly involved in all surgeries so you still get the benefit of their skills and knowledge. I did not find HW until month or so after my RRP. But I am not sure it would have changed anything I did. I had all the same questions to ask my Doctor from my reading and searching. I liked his answers and his personallity. I was just unlucky in the incontinance turn out. I did go to a "teaching" hospital and Doctor for my AUS and have been happy with the results.
We are here to help,
KW
    43 at Dx and Surgery (RRP)
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).
    July 30, PSA 0.00.
    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey
    Oct. 6th, 2008 - AUS Activation by Dr. Morey
     


soxfans4life
Regular Member


Date Joined Apr 2008
Total Posts : 63
   Posted 11/11/2008 4:33 PM (GMT -6)   
Mark,  We can't agree enough on the importance of getting a second reading of your biopsy specimen! It's our first piece of advice to everyone, and something we really wish we did . Then take your time, find a practiced surgeon you trust ,and know that you will come out on the other side of this!  Still sox fans, Rod & Annie                              

dx. 3-08  @ age 63. gleason 6 . 1 out of 12 cores positive. 4th biopsy in 8 years. previous 3 negative. followed closely due to family hx.grandfather, father and 2 uncles dx. with prostate cancer. dre negative, cat and bone scan negative. davinci scheduled for may 27, 2008. 2 daughters, retired hospital administration, air force family years ago. Davinci on May28,2008, both nerves spared. Catheter removed in 8 days, pathology report revealed precancerous lesions. Presurgical psa was 5.9, 1st  psa scheduled for August. 1st post surgery psa 0.00, august 6,2008.


coxjajb
Regular Member


Date Joined Nov 2008
Total Posts : 184
   Posted 11/11/2008 7:49 PM (GMT -6)   
If you opt for surgery, after all your research and advice from physicians, find a doctor that has advantage of the most current technology and skill to use that technology. My physician has performed over 1,000 prostatectomy procedures. There is never a guarantee with a medical procedure but you can stack the deck in you favor.
Age 50
Pre - Op PSA, 4.3
Gleason 3+4=7
Stage T1C
Da Vinci Prostatectomy 8/1/08
No issues with incontinence or ED since day 1 after catheter removal


RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 11/12/2008 9:21 AM (GMT -6)   
I will add my two cents about the doctor. Since your biopsy shows you have caught it very early (and I agree you should probably have a second opinion) you have all the options available to you. If you choose surgery, the big deal for you is nerve sparing. You will want to have confidence your surgeon has a strong history of performing that kind of surgery with success. You are young and if you undergo surgery with a skilled and experienced surgeon the chances for good recovery of all functions will be high. I wish you the best.

RB
Age 61
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA <.04
2nd Post PSA <.1 10/30/2008

boxers
New Member


Date Joined Nov 2008
Total Posts : 1
   Posted 11/13/2008 10:06 AM (GMT -6)   

Your data is very similar to mine. I am 44 and was diagnosed three months ago. My PSA was only 2.6, but I have a very strong family history history of PC (Father probably, two older brothers both had surgery prior to me).  They both had the "open" procedure. I am recovering now from the daVinci robotic on Nov 3. If you are a candidate for the robotic, I don't really understand why anyone would opt for the traditional. My recovery has been pretty "easy" overall and I am planning on returning to work on Monday after only two weeks off. My brothers were out for 5 to 6 weeks with much more painful and difficult recoveries. 

Too early to determine the long term results but my pathology report was very good. Less than 5% involvement and Gleason scores 3+3 both at biopsy and post-surgery.  Good luck with your journey.

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