Pre surgery angst

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Oncas
Regular Member


Date Joined Jan 2009
Total Posts : 390
   Posted 3/23/2009 5:38 PM (GMT -6)   
After my diagnosis about eight weeks ago I researched my disease and the treatment options available as extensively as I could.
I have a prostate 70% cancerous, a PSA of 8 and all cores positive (most Gleason 7, one Gleason 8).
I found a good urologist who outlined my options and recommended surgery as still my best option. He did not feel that radiation was indicated given my stats. My surgery is three days away but I continue to research. I am somewhat uneasy because the more I dig the more support I find for non surgical approaches for those with my numbers. Dealing with the ravages of this surgery is something I can handle.  Dealing with having made a wrong choice would be far more devastating. I'm sure most have dealt with this uneasiness. It really is a crapshoot.  Good luck to all.
 
Oncas

webstergl
Regular Member


Date Joined Mar 2009
Total Posts : 25
   Posted 3/23/2009 5:56 PM (GMT -6)   
I can only speak for myself, I was dianosed 4/07 I had 5 of 12 cores that were posstive gleason was 7 on those I had several others that were inconclusive, I was 52 then with 2 kids at home still, I researched the hell out of everthing and every time I would come back around to: If I only have cancer in the prostate and they take it out then ther ewould be no doubt that the cancer had been removed.

I elected to go with the Da Vinci robotic surgery, I can't say it has been a cake walk but I am only dealing with the side affects of incontinece and some scar tissue that can be fixed and not worried about every pain that the cancer has spread. I simply got it the hell out of me.

You owe it to yourself to get all the options, go see an oncologist and get there opinion but in the long run it will be your decission on how you will have the cancer treated right wrong or indifferent

Age 54 (Dx age 52)

11/06 severe prostate infection PSA was at 52

2/07  4th PSA still at 6.2

3/07 Biopsy

4/07 5 of 12 core samples positive with Gleason at 6 -7

6/07 Robotic Radical Prostatectomy

Pathology showed Cancer was organ contained

Last 3 PSA’s 0

11/08 Dx with BNC (Bladder Neck Contracture) due to scare tissue

3/08 Scheduled for TUI, as well either an AUS or Male sling not sure at this point which one


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4180
   Posted 3/23/2009 6:17 PM (GMT -6)   

Dear Oncas:

I understand your angst as I'm sure many people have it pre-procedure.  However, I personally feel it is extremely important for a patient to be confident in his decision...both pre and post procedure.  You mentioned that you spoke with a urologist.  Did you also meet with a radiation oncologist?  How about a prostate oncologist?  Believe me, I'm not trying to make you second guess your decision.  But, for me, it was critical that I had satisfied myself that I had reviewed all options extensively and had conversations with multiple practicitioners.  I even had a phone consult with proton beam docs at one of the few centers who perform that procedure.

If you continue down the current path, I wish you the best and will pray for the success of your surgery.  If you delay it and spend some time exploring options with other docs, I'm sure no one would criticize you for doing so.  As I said, it's important that you feel comfortable in making a fully informed decision.

With best wishes,

Tudpock


Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
2 of 16 cores cancerous
27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 3/6/09.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 3/23/2009 6:23 PM (GMT -6)   
Oncas,

If you have any serious doubts about the surgical route, then you can always postpone or delay it. I will tell you the same thing I told my daughter when she walking down the aisle to get married, if you have any doubts, lets just turn around right now. Not telling you what to do, only you know that, but at this point, you still have choices, so make sure this is what you really want to do, there is no reversing it once it's done. I felt the same way in the pre-surgery waiting area, even as they were about to wheel me away, but I knew in my heart, for me, with my stats, I had to go through with it, and that was that. We are here for you brother, no matter what you decide. May peace come to your mind and heart about it.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 6 month on 5/9
 
 


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4180
   Posted 3/23/2009 6:29 PM (GMT -6)   

David, I'm really glad you weighed in on this.  I was ambivalent about suggesting that a potential surgery person look at other options for fear he think I was pushing a non-surgery agenda...which I am definitely not doing.  I think having a successful surgery patient like you support being confident after looking at options carries a lot of weight.  You analogy about walking down the aisle was excellent.

Tudpock


Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
2 of 16 cores cancerous
27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 3/6/09.

GarthK
Regular Member


Date Joined Feb 2009
Total Posts : 74
   Posted 3/23/2009 7:07 PM (GMT -6)   
I was diagnosed in Dec'08 and had the RRP in Jan'09 and have no regrets. I am continent with a <0.014 PSA in Mar'09 and, should it start to rise, I will still have other options available. That said, I agree with all comments so far. However, in my case, I wanted it out either by DaVinci or RRP. My uro stated that he preferred RRP so he could have a better view. I trusted his judgment and am pleased with the results.

Unfortunately, there are many ways to treat PCa and deciding which to choose can be a real challenge.

Good luck to you with whichever method you choose.
Garth
Vitae:
DOB: Q4'46, HT: 5'9", WT: 180
PC:
Biopsy: 12/08
Cores: 4 of 12+ positive
PSA: <2.5
DRE: Slight enlargement, one node
Gleason: 3+3
Surgery: RRP on 1/21/09
Catheter: 15 days
Pathology:
Adenocarcinoma occupying 5% of prostatic volume (right posterior aspect)
Gleason: 3+2
No extraprostatic extensions
Perineural invasion within prostate only
No angiolymphatic invasion
No seminal vesicle invasion
Clear margins
AJCC: pT2a
Post-op PSA's
3/10/09 < 0.014 (undetectable by machine)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 3/23/2009 7:15 PM (GMT -6)   
Tudpock,

I just wanted Oncas to know that until something happens, like his pending operation, he is free to re-think if he needs to, it is such an important decision to make, and I think we all agree here, that once you do it, then don't look backwards. It might just be pre-surgery jitters, and any of us can understand that. My PC surgery was at least my 5 or 6th major surgery in my life, and it still made me nervous and unsettled. I wasn't ever afraid of having surgery, I was more afraid of making the wrong choice. In the end, I honestly didn't feel I had any other viable option, factoring in family considerations, finances, insurance, hopsital and doctor choices, and of course, my personal stats from the biopsy. Even knowing all that, plus the research I did ahead of time, it still wasn't easy to do it. Tud, you took the path less traveled, and I have always respected you for that choice. As you know, I was strongly considering it for myself, but my dr and my former oncologist (from my previous cancers) didn't think it would give me good long term results.

And to you, Brother Oncas, once you get it set in your mind and heart, it will all come together for you, and for what its worth department, we really are here for you, no matter what you choose to do or not to do. All the best thoughts going your way.

David in SC


Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 6 month on 5/9
 
 


strawberry man
Regular Member


Date Joined Dec 2008
Total Posts : 23
   Posted 3/23/2009 7:21 PM (GMT -6)   
Oncas, I went through the same thing, you don't really know what to do. I went through with the robotic radical prostate surgery and am glad I did. (it has been over 9 months)

Dx 4/21/08 psa 9.7  Age 58 OMG

Biopsy results  3 areas of  3+3=6 gleason

Di Vinci surgery 6/3/08

Post op 3 months and 6 months -  all clear

0 psa TYG  (thank you God)


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 3/23/2009 7:59 PM (GMT -6)   
I was a multi-task worrier and researcher before my surgery. If I were left alone on surgery day, I believe I would have run away. That is how frightened I was. Yep, I am a grown man and was scared xxxxless. I did go through the surgery and everything worked out for me. I do not want to give bad information but I was told I could have radiation after surgery. If I had radiation first, it would be difficult to have the prostate removed later. Good luck on whatever you choose and keep us posted.
 
Age 49
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
decision - surgery (robotic)
Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8
margins clear
9 month  PSA <.04 (low as the machine will go)
continent at 10 weeks (no pads!)
ED is still an issue


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 3/23/2009 8:01 PM (GMT -6)   
Oncas, can you give us some stats. How old are and what is your PSA?
 
Age 49
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
decision - surgery (robotic)
Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8
margins clear
9 month  PSA <.04 (low as the machine will go)
continent at 10 weeks (no pads!)
ED is still an issue


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4235
   Posted 3/23/2009 8:54 PM (GMT -6)   
Oncas,
It's a tough decision, but waiting a few weeks won't matter if you're unsure. Did you look at the nomograms and partin tables on the various options with your individual stats?
Do you know where your tumor is located? Has it penetrated the capsule? these are important things to know before choosing an option. I would talk to a radiologist and a prostate oncologist not connected to your urologist before I made a final decision. Then you can at least be sure you covered all bases and won't 2nd guess your decision.
JohnT

64 years old.

I had an initial PSA test in 1999 of 4.4. PSA increased every 6 months reaching 40 in 5-08. PSA free ranged from 16% to 10%. Over this time period I had a total of 13 biopsies and an endorectal MRIS all negative and have seen doctors at Long Beach, UCLA, UCSF and UCI. DX has always been BPH and continue to get biopsies every year.

In 10-08 I had a 25 core biopsy that showed 2 cores positive, gleason 6 at less than 5%. Surgery was recommended and I was in the process of interviewing surgeons when my wife's oncologist recommended I get a 2nd opinion from a prostate oncologist.

I saw Dr Sholtz, in Marina Del Rey, and he said that the path reports indicated no tumor, but indolant cancer clusters that didn't need any treatment. He was concerned that my PSA history indicated that I had a large amount of PC somewhere that had yet to be uncovered and put me through several more tests.

A color doppler targeted biopsy in 11-08 found a large tumor in the transition zone, gleason 6 and 7. Because of my high PSA Dr. suspected lymph node involvement, 30% chance, and sent me to Holland for a Combidex MRI, even though bone and CT scans were clear.

Combidex MRI showed clear lymph nodes and a 2,5 cm tumor in the anterior. I was his 1st patient to come up clear on the Combidex which has a 96% accuracy,

I've been on a no meat and dairy diet since 12-08 and PSA reduce to 30 while I awaited the Combidex MRI.

The location of the tumor in the anterior apex next to the urethea makes a good surgical margin very unlikely. Currently on Casodex and Proscar for 8 weeks to shrink my 60 mm prostate. Treatment will be seeds followed by 5 weeks of IMRT while continuing on Casodex and Proscar. So far no side affects from the Casodex.

JohnT


mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 3/23/2009 10:40 PM (GMT -6)   

Oncas:

 

A crapshoot for sure. You said this guy was good. Go with it and don't look back.From what I have read it takes years before the full result is known, regardless of the choice you make. You are obviously in tough here but my impression is that you are a formidable adversary. I wish you all the best.

 
 
 
63 years old-tumor discovered on digital exam- biopsy December 2008-
4 of 12 samples positive-all on right side
Gleason 3+3=6
PSA-3
Otherwise excellent health.
 
  "There may come a day when the courage of men will fail, but it will not be this day."


Oncas
Regular Member


Date Joined Jan 2009
Total Posts : 390
   Posted 3/24/2009 5:07 AM (GMT -6)   
In response to Rob, My PSA went from 2.7 to 8.04 in 3 years. I'm 61 years old otherwise good health. I felt comfortable enough with this urologist's advice and did not seek input from an oncologist. Dug deeper into the numbers and tables in the ensuing weeks and developed some concerns as to my treatment plan. With 70% cancer and at least one Gleason 8 (the remainder 7"s) , prostate firm, probably at least a t3a, my chances for extracapsular extension are about 80%. The treatment plan is for open radical alone as a curative with radiation as an option down the road given evidence of a rising PSA.
Does this seem appropriate or am I showing up at a gunfight with a knife?
As I stated, I'm more frightened with making the wrong choice than I am of the disease.
I understand that these questions should best be directed to my doctor but the wealth of experience on this forum has been a great resource for me and I thank you all.

Oncas

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 3/24/2009 5:57 AM (GMT -6)   
Oncas,
The decision on which treatment is difficult. There are side effects to all treatments. If you go with surgery once the doctor looks in there he will be better able to see the extent of the cancer, or if this is not clear at that time, then the post op pathology will indicate if it was organ confined or not. If not then you still have the radiation option available as additional treatment. Now all of us who chose surgery had our hearts in our mouths right up to the op............it is completely normal to be worried and nervous..........nobody likes not being in control. But this is different to having deep doubts about whether you feel you have chosen the correct treatment. Having had surgery myself I would never advise against it, but if you have these deep seated doubts about what you feel is right for you, then put it off for a month or so. You can always opt for a short course of ADT to hold the cancer in check while you seek to become more comfortable with your decision.. I feel that it's absolutely essential to consult with a good radiation guy to get his input and, if he feels radiation is the best for you ask him why. I really don't feel there's a "wrong choice" as most treatments offer very similar outcomes but, although like all of us here who did not want treatment of any kind, once the decision to go is made make sure you're be reasonably comfortable with the chosen path.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01

Post Edited (BillyMac) : 3/24/2009 5:05:20 AM (GMT-6)


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 3/24/2009 6:08 AM (GMT -6)   

Greetings, Oncas.  I believe every person here made the choice that they thought was right for them.  Of course, they had lots of input - not the least of which was from medical professionals.  My urologist is not a surgeon.  He does general urology with a specific specialty of impotence issues.  Thus, he told me that whatever option I chose I would have to see someone else.  He had a recommendation, but he made sure that I was aware of all the options.  He gave me a book to read before making a decision or consulting with anyone else.  In the end, we chose surgery because it seemed that at my age that option gave the best options for long term survival and also if the cancer came back I still had other options. 

By the way, when I had my presurgery consult and tests at the hospital, the nurse got a little worried.  Here I was a 55 year old guy and had never been put to sleep, never had a broken bone, never even had a stitch from a cut.  She got the anestheology guy on the line just to make sure I didn't need to do anything special to prepare.  In the end it all went well. 

In the end, you and your loved ones need to make the decision that is right for you.  I'll be the first to admit that because of the success of my surgery, we are somewhat prejudiced toward that option.  However, I recognize that the other options are right for some people.  My Dad was diagnosed in his early 70s and had radiation.  At 81 his PSA continues to be low and he is doing fine. 

There are lots of options - make the decision that is right for you and don't look back.  You have lots of support here and hopefully at home as well.  Best wishes as you make this decision and move forward with your healing and recovery.  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


beachbum50
Regular Member


Date Joined Sep 2007
Total Posts : 292
   Posted 3/24/2009 11:06 AM (GMT -6)   

Oncas, My prostate was 65% full of cancer, 15 of 16 cores had cancer, Gleeson was six, C2A. I was very lucky, and my robotic operation was able to get all the cancer in October of 07, and all my PSA test have been undetectable. My thinking was that if the operation did not get it all, I still had the option of radiation or chemo. I have friends that in the past year have made the decision not to have an operation, but to nuke the Cancer, and my friend in this office elected to follow my route with the robot and same Doctor next month. We all have different thought processes and need to follow whatever course that education and reflection lead you to follow. I had few after effects from the Di Venci, and still think I made the best decision for ME. We are all pulling for you, and look forward to your joining the Zero Club soon.

Beachbum turn


Beachbum
 
PSA 10 June 2007
Biopsy July 2, 15 of 16 samples positive
T2C
3+3=6
prostate weighed 40 grams
Di Vinci 10/09/07, four hours on table, 3 in recovery
Total time in Hospital: 29 hours
Record for Dr. Lance, 70% of prostate had cancer, but NO spread, clean margins,Clean nodes,
First PSA at 5 weeks, UNDETECTABLE!
Catheter out at seven days, dry from hour one!
Second PSA 19 weeks post op, UNDETECTABLE 2/11/2008
Third PSA 5/12/08, six months post op, UNDETECTABLE
Fourth PSA 8/21/08, nine months post op, UNDETECTABLE
One Year visit in December 2008, UNDETECTABLE, now go visit every six months!
The Lord has truly Blessed me.


GarthK
Regular Member


Date Joined Feb 2009
Total Posts : 74
   Posted 3/24/2009 12:06 PM (GMT -6)   
Oncas, we all hesitate to "tell" you what to do for a variety of reasons. That said, I think you have already mapped out a reasonable course of action with a uro you trust so, while I won't tell you to follow thru, I will state that I used the same (RRP) approach with a uro I trusted and am pleased with the results. Your results may vary (disclaimer, disclaimer:-)) but your plan is reasonable for what you know. You can always get more opinions (both professional and ours) but it will remain a difficult decision. Don't do too much second guessing is my advice.

Good luck,
Garth
Vitae:
DOB: Q4'46, HT: 5'9", WT: 180
PC:
Biopsy: 12/08
Cores: 4 of 12+ positive
PSA: <2.5
DRE: Slight enlargement, one node
Gleason: 3+3
Surgery: RRP on 1/21/09
Catheter: 15 days
Pathology:
Adenocarcinoma occupying 5% of prostatic volume (right posterior aspect)
Gleason: 3+2
No extraprostatic extensions
Perineural invasion within prostate only
No angiolymphatic invasion
No seminal vesicle invasion
Clear margins
AJCC: pT2a
Post-op PSA's
3/10/09 < 0.014 (undetectable by machine)


RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 3/24/2009 1:09 PM (GMT -6)   
All of us struggled with the same issue regarding the decision process. Your diagnosis is serious - mine was also in the sense there was no guarantee the surgery was going to get it all, but there was the good possibility it would. That is the same position you are in. I believe you have to begin with the end in view. I continue to believe that surgery is the gold standard. I convinced myself the most important thing was to do everything reasonable to continue living. I felt I would have more possible regret doing radiation, then having the cancer removed. It is hard to see how you can regret surgery because you still have radiation as a backup. On the otherhand, if the radiation fails your backups are limited.

I don't believe it is a case of absolute confidence either way. I do believe you must come to a position of selecting what you believe is your best opportunity in the long term. Blessings.

RB
Age 61 (now 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) 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 <.01 10/30/2008

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, July 17, 2018 8:54 AM (GMT -6)
There are a total of 2,982,361 posts in 326,997 threads.
View Active Threads


Who's Online
This forum has 161815 registered members. Please welcome our newest member, Aliwitt.
395 Guest(s), 4 Registered Member(s) are currently online.  Details
DBwithUC, Dimitri71, amafi, InTheShop