RP decision to make...deliberately lose the nerves and be safe or keep and risk recurrence

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Mike59
New Member


Date Joined Apr 2009
Total Posts : 2
   Posted 4/22/2009 1:45 AM (GMT -6)   
I am new to this forum, stumbled across it in a desperate search for answers that I can believe, and can use some advice. I have conversed with two Urology Oncologists...the second one today and the news was very different from the first...or maybe it is just news that was not spoken previously.
 
I am 59, PSA 5.5, 12 of 12 cores positive. Partins 4+3. Bone scan clear. CT scan clear. Happily married. 2 children and 6 grandchildren...mother, sister, brother living. Lots to live for.
 
The suggested course of action, today, is to bite the bullet, skip efforts to save the nerves, and resign my self to ED for the rest of my life as the cancer is deemed aggressive and the probability of requiring subsequent radiation and hormonal therapy is high...resulting in a libido level so low that I won't care.
 
I am trying to find out if Surgeon 2 is just 'telling me like it is' (which I appreciate if that is the case) or if he is bring overly cautious. He has roughly 700 robotic RPs to his credit so there is considerable experience to draw on.
 
My questions for anyone with experience or similar conditions....
  1. Is my cancer really that aggressive? No one has really said specifically. No one until today acted like this was a real emergency..wanting me in the OR next week.
  2. Is my condition so advanced that I should be willing to give up any hope of avoiding ED and agree to deliberately remove the surrounding tissues due to the probability of 'microscopic extracapsular extension'. Included are the pelvic lymph nodes.
  3. Given the stage 3 diagnosis what is the probability of recurrence? Todays consult indicated that my probability is 100% for recurrence.
  4. How does everyone's spouse/SO deal with the ED?
I am desperate to hear some plain talk from anyone with similar experience. I will make my own decision but I have a very limited pool to draw on at the moment and I need to make some decisions quickly...it has been two months since the diagnosis and everyone is concerned.
 
Thanks!

Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 4/22/2009 6:39 AM (GMT -6)   
Mike,
First of all, welcome. I would certainly get yet another opinion. The vast majority of PCa is not an urgent 'get in the OR next week' kind of thing. So, that right there raises a red flag for me. If this is the first you have heard that the cancer is aggressive - how does he know it is? (I must be dumb, but is Partins 7 the same as Gleeson 7?) If so, then 7 is not all that bad. yes, it is higher risk, but not an emergency. Why does he think the cancer has spread? or escaped the prostate? Most doctors do not know this until surgery I think. Two possibilities, either the DR is too aggressive in his scare tactics, or there is some info you have left out. Either way, get another opinion. Drive to a major city if you have to.

But I would caution you to not base your treatment on ED. Without nerves you will almost certainly have to rely on injections for sex. Tons of guys use injections and discover it is a perfectly viable way to go. You DO have tons to live for. I would still get another opinion and then make my decision based on the best treatment for your health - not your erections.
Spouses often deal with the ED better than us guys do, frankly.
paul
46 at Diagnosis.
Father died of Pca 4/07 at 86.
1/06 PSA 3.15
1/07 PSA 4.6 (Biopsy 3/07 just suspicious)
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
-totally contained to prostate,
-10% involvement in L & R Mid lobes
PSA 0 at nine months.
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - Took 100mg viagra every night. for several months
Totally usable erections at 10 weeks, which disappeared over the course of a month or two.
ED bounce is what they call it. Now, at one year, ED is fine with viagra.
One year PSA - undectable!


nasso
Regular Member


Date Joined Feb 2009
Total Posts : 27
   Posted 4/22/2009 7:25 AM (GMT -6)   
Hi Mike,

Welcome to those forums, and sorry to see you with this disease.

Here is my personal experience:

First consultation - urologist with ~300 DaVinci - he said he will have to remove both nerve bundles as my cancer was pretty advanced

Second consultation - urologist with ~1000 DaVinci - he said he might have to remove the nerve bundles on one side, but would definitely save the other side.

Third consultation with Dr Walsh, who has done over 4000 open surgeries - he said he will most probably keep both nerve bundles, but ultimately will decide during the surgery. The open surgery gives him more "feel" for the extent of the cancer. At the end I went with Dr Walsh, he saved both bundles and I still had negative margins.

I think you should definitely look for a second opinion, hopefuly with an experienced surgeon that has done at least 1000 surgeries. If he still advises you to remove both nerve bundles, go for it you have so much to live for.
Age at DX: 43
PSA: 11/08:15.6, 01/09:16.6, 02/09:17.1
Biopsy 12/08 at USF Tampa
8/12 cores positive, GS 3+3,
perineural invasion in 2 cores
Staged T1c
CT, Bone, XRay negative
03/04/09 - Open Surgery at Johns Hopkins by Dr Patrick Walsh
Path Report: GS 6, Tumor Contained, margin clears, nodes+vesicles clean
Both nerves spared,
Catheter Out: 03/18/09
Incontinence : Resolved from day one, cant believe it
ED : some signs of life
Diet : Vegetarian, No-meat, no dairy diet since 01/09


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 4/22/2009 8:16 AM (GMT -6)   
Hi Mike and welcome also.

I would have to agree to what others have said. Get more opinions before you make your decision. Find out what the percentage of PCa was found in each core. Your case sounds like it could go either way as far as the nerve bundles. But with a Gleason 7 and a low PSA, you definitely need more opinions and have the biopsy samples reread by another pathologist.

You said the CT scan was clear, but there are additional tests to determine where the cancer is located and how extensive. JohnT a member here will shed some light on additional tests that can be done...hopefully he will chime in soon.

Good luck and keep us informed
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month April 2009 .06


DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 818
   Posted 4/22/2009 8:41 AM (GMT -6)   
Mike,

You didn't mention the date of your biopsy. It's general practice to let the tissues heal from the biopsy procedure for 6 to 8 weeks before surgery. So you have at least that much time to research and get opinions. In my case, I was ready to go under before they were willing to take me.

DJ
Diagnosis at age 53. PSA 2007 about 2; PSA 2008 4.3
Biopsy September 2008: 6 of 12 cores positive; Gleason 4+3 = 7
CT and Bone scan negative
Da Vinci surgery at City of Hope December 8, 2008
Radical prostatectomy and lymph node dissection
Catheter out on 7th day, replaced on 8th day, out again 14th day following negative cystogram
Pathology: pT2c; lymph nodes negative; margins involved; 41 grams, 8% involved by tumor; same Gleason 4+3=7
PSA 1/22/08 non-detectable! 8-)


alex1
Regular Member


Date Joined May 2008
Total Posts : 29
   Posted 4/22/2009 10:39 AM (GMT -6)   
Mike:

Get a very experienced surgeon and listen to him. Mine (who has done over 2500 robotics) told me he really wouldn't know what to do until he got there, but was very reassuring that he would try to do as little damage as possible. However, he was very clear that getting rid of the cancer was the priority (particularly at your age). I was fortunate in that the surgery spared both nerve bundles, and I am a recovering (slowly) ED patient. However, had that not been the case, as I look at it from this side of the surgery, the virtual certainty that the cancer is gone for good is worth far more than the ability to have sex as you used to. In any event, PC is a life changing event and the goal should be that you go out the other side having a life to enjoy hopefully without the spectre of a re-occurrence.
58-year old attorney, no family history of PCa
Biopsy 12/29/2007 with 1 of thirteen samples positive; estimated 5% involvement
3+3=6 Gleason
TR2C Stage
RRLP on 2/21/2008 with excellent prognosis (no evidence;margins and other tissue clear) on cancer clearance and sparing of both nerve bundles
Post-OP:Actual involvement 15%, one lobe only; PCa fully contained in prostate-no involvement with other tissues and margins clear
Catheter out on 3/2/2008; fully continent by 3/31/2008
Undetectable PSA on 3/31/2008
Working on ED: 20MG Levitra every other day; Vacuum pump almost daily; some improvement, but not there yet. Started using MUSE with some success, 11/1/2008
2d undectable PSA on 7/21/2008
3d undectable PSA on 10/30/2008


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 4/22/2009 2:40 PM (GMT -6)   
Mike

You did not say if there is a family history which makes a big difference. I was diagnosed a year ago at your same age. Half of my cores were positive and the Gleasons were 8 & 9. My PSA went from 4.0 to 10 in a year. My dad was diagnosed and had PCA surgery at the age of 70.

My urologist did not consider me a candidate for robotic and he checked with the rest of his group practice which have performed over a 1,000 robotic surgeries. They all agreed that open was the best way to go. My scans were clear like yours. The surgery was a success but I did lose the left side nerve bundle.

My ED is lessening and I figure in another year, I will be back to normal. However, I LOVE the injections and plan on using them long after I'm healed. My libido never went away at any part during the surgery, healing, etc.
Age 60
PSA 2007 4.1
PSA 2008 10.0
Diagnosed April 2008
Biopsy: 6 of 12 cores positive
Gleason 4 + 5 = 9
CT and Bone Scan negative
Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared
Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th
pT2c
lymph nodes negative
PSA Sept 28, 2008 0.00
PSA Jan 22, 2009 0.00


apacker1950
Regular Member


Date Joined Nov 2008
Total Posts : 122
   Posted 4/22/2009 2:54 PM (GMT -6)   
Let me echo what has been said about seeking the best solution to ridding yourself of PCa.  Don't let the chance of ED effect your decision on how to procede.  Having nerve-sparing surgery doesn't guarantee that you will regain erections.  I am 1st hand proof of that, however with the help of trimix, my wife and I enjoy a very active and fullfilling love life. 
Good luck to you in your decision.  Get well so we can welcome you to the other side. (The healing side.)
 
Allan
Dx PCa age 54. Jly 05- PSA 8.1 Sept 05- PSA 10.7
Sept 05- Biopsy  9 of 12 cancerous, Gleason 3+3=6, T2
Bone scan and cat scan showed hot spot on hip bone.
Oct 05- bone biopsy, ouch.  benign , no cancer in bones.
Nov 05- PSA 15.4 Nov 18, 05- Nerve sparing open RP at Huntsman Cancer Center, by Dr. Robert Stevenson. 100% continence at 3 months. ED- Tried the big 3 pills with no results. Feb 06-Started VED, worked, but painful with constriction rings. May 06 started Trimix injections.
ED appears to be perminant but doing great with Trimix.
PSA remains undetectable.


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 4/22/2009 8:19 PM (GMT -6)   
I'll echo what has been said earlier - get rid of the cancer.  In most cases, I think the surgeon should make the decision as he is doing the surgery based on what he finds when he gets in.  I suppose there are cases where they know going in that everything needs to come out - I'd definitely look for another opinion if the surgeon is saying this prior to surgery.  Trust everything will go great and look forward to hearing from you as you begin the healing process.  David

Age 55
Diagnosed Dec 2007 during annual routine physical
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 positive with 2 marginal
Gleason 3 + 3 = 6
RRP 4 Feb 08
Both nerves spared
Good pathology - no margins - all encapsulated - Gleason 4 + 3 = 7
Catheter out Feb 13 - wore pad for couple of days - pad free Feb 16
Great wife and family who take very good care of me


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2460
   Posted 4/22/2009 8:30 PM (GMT -6)   
Mike,
I'm probably the only one here who had both serve bundles removed. As you can see, I'm older than you and my only concern at the time was to do what ever it takes to achieve negative margins. I agree that you should get as much information as you can before deciding. ED is an issue even with many on this forum who had one or both nerve bundles saved. There are ways to overcome it with injections even if you have no nerves saved.
Age: 67
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
Dx 12/30/08
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
Surgeon: Dr. Randy Fagin, Austin TX.
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Bilateral 10-20% involved
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx
Negative margins
seminal vesicles clean
Lymph nodes: not dissected
1st PSA test 4/7/09 result <0.1


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 686
   Posted 4/22/2009 9:04 PM (GMT -6)   

WOW....After being on this forum for almost three years, I am constantly amazed by the depth of caring and help that everyday people can provide.  Mike 59, like most of us you found this website on a general web search for prostate cancer.  What you have found (in my opinion) is the finest source for help, encouragment and information regarding prostate cancer.

You will get help. Not all of it is totally accurate, Not all of it directly usable by you, but you will not find a better place to base your decision making and to give you support.

Good luck...It looks to me like you will have a good future.  Maybe not the exact future that you planned, but staying alive sounds good to me. :-)   


PSA up to 4.7 July 2006 , nodule noted during DRE
Biopsy 10/16/06 ,stageT2A
Aggressive Gleason 4+4=8  right side
DaVinci Surgery  January 2007
Post op confirms gleason 4+4=8
No extension or invasion identified
Few continence problems
PSA 90 day (-.01)  , (6 month -.01) , (9 month +.02) , (1 year +.02) ( 18 months +.02) (two years+.03)
One side nerve spared
still using bi-mix 
born in 1941


RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 4/23/2009 10:55 AM (GMT -6)   

My situation was similar to yours, and the doctor who did mine was near emphatic that he would not try to spare the nerves.  He called it cutting a wider path - his concern was to achieve negative margins.  My pathology ended up being good, and I suppose from the pathology that I could have had nerve-sparing.  On the other hand I really don't have regrets because the number ONE goal is cancer-free.  Compared to that the rest is almost nothing!

Now, as far as ED.  It is a problem.  Things will not be the same.  For me, even my desire has not been the same, but after-all I am not getting any younger either.  On the other hand, even though very inconvenient and messy, there are the ways described by others to continue having a love life.  A lot of all this depends on your attitude going in, and the cooperation / understanding of your spouse.  The bottom line is that I agree with everyone else - to be rid of the cancer is the chief concern, and if God gives you that reprieve than the rest of the matters will work themselves out.  Blessings.

 


RB
Age 62
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) 5/19/2008
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved

PSA <.04 7/12/2008

PSA <.01 10/30/2008

PSA <.01 4/03/2009

 


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 4/23/2009 2:55 PM (GMT -6)   
My father had a very similar diagnosis prior to surgery. Gleason 7. PSA 5.5 and clear CT, transrectal MRI and bone scan. The surgeon was able to save one nerve bundle, however, because of the post surgery path report, he needed salvage radiation and is on HT. He still has the hopes of intercourse once he has completed his two years of HT, however, who knows how that will work out. We are hoping for the best. Best of luck and my only advice, is surround yourself with people you trust and hold on to hope. 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


Dave7
Regular Member


Date Joined Jul 2006
Total Posts : 202
   Posted 4/23/2009 6:56 PM (GMT -6)   

Your PSA and gleason in and of themselves cause me to agree with others about getting more opinions.

One factor may be the location of the tumors.  Are any at the apex?  If so, I think that could make nerve sparing a bit more uncertain.


Age:54
PSA 5/22/06: 5.6
DaVinci surgery: 9/14/06
Gleason: 3+3
Organ confined, clean margins.
Both nerve bundles spared.


Mike59
New Member


Date Joined Apr 2009
Total Posts : 2
   Posted 4/24/2009 11:12 PM (GMT -6)   
Wow...I hadn't checked for responses in a couple days and I am overwhelmed by the number and sincerity...thank all of you so much for this.
I spent the last few days tracking down a very reputable surgeon in Boston at Mass General...so I have decided to take an earlier suggestion and travel to a 'big' city. He has just under 4000 surgeries, prefers 'open' verses robotic as he feels he has better options for making decisions as he goes. He is an early developer of using a hydro-dissection technique to separate the nerves from the prostate tissue and has an incredibly high success rate for balancing nerve sparing with cancer removal and keeping his patients alive and healthy. It became very obvious how important it is to chose a surgeon with a LOT of experience and whose philosophy aligns with mine. I expected experience to make a difference but, as another member clearly indicated above, the learning curve is steep and doesn't seem to level off indicating that there is no such thing as 'too much experience'. So...I have declined the surgeon here in Seattle and have arranged for surgery in mid June, probably with a single hormone treatement to keep things from getting worse until then.
I have spent a lot of time reading about the post-op issues and am trying to come to grips with this. I have had several near-death experiences in my life and have recovered fully from all them so this is particularly difficult to understand. I find hope in the comments of everyone, hear the desperation in the words of some as the '1 year' mark approaches for them. I am wondering where I will fall, what my numbers will be. Thank God..and I mean that...I have a very loving and devoted wife to help me through this. I have confided in my brother and sister, have not told my children, and, so far, have chosen to not tell my mother as this would devastate her. She is 82, already on a pacemaker, and is worried to death about my sister who is 'her mothers daugher' and has inherited her heart ailements. I am curious to hear how everyone dealt with their families and how they reacted...maybe there will be a nugget of inspiration in there for me.
Thanks everyone...
--------------------------------------------------------------------------------
Age 59 and very healthy otherwise.
Biopsy on 2/25/09: Left Base- Adenocarcinoma, 4+3, Left Mid- Adenocarcinoma 4+3, Left Apex- Tiny focus of Adenocarcinoma 3+3, Right Base- Adenocarcinoma 4+3, Right Mid- Adenocarcinoma 4+3, Right Apex- Adenocarcinoma 4+3
Bone SCAN/CT 3/10/2009: Both negative.

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 4/25/2009 2:45 PM (GMT -6)   
Interesting question about family, so I'm gonna bump it back to the top for another chance at some repiles for you... smilewinkgrin
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 4/25/2009 2:56 PM (GMT -6)   
I have several friends, associates at work, and a brother-in-law who had their prostate removed more than 15 years ago. Armed with this knowledge, and keeping details to myself, I told others about it but in the context of it being no big deal. I took the side of hoping for the best, but personally and privately preparing for the worst.

I think your attitude about how you present it to others has a great deal to do with their response. In reality it may be no big deal - just one of many barriers along the road of life. For the most part, the people on the forum have caught their disease and are receiving great treatments and most are cured or doing well. Why make it more dreary than it is - cross the more negative aspects of that bridge only if you have to. I have a spouse, 5 children, and 6 grandchildren - all of them took the situation optimistically and so should you.

I would let them know in the context of it being routine - for it is for many of us men. I think you will find them very supportive - yes somewhat concerned, but optimistic if you are.

RB
Age 62
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) 5/19/2008
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved

PSA <.04 7/12/2008

PSA <.01 10/30/2008

PSA <.01 4/03/2009

 

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