What Questions to ask post surgery

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Caferacer
New Member


Date Joined Jan 2011
Total Posts : 1
   Posted 1/19/2011 1:04 PM (GMT -6)   
I had Davinci surgery in December, went back to the Dr. one week later for bladder check and removal of the catheter.  This was done by the physician's assistant.  My surgeon came in with the post surgical pathology report and said  somthing about margins(?) that I understood to mean I still had cancer.  He was in and out within 2 minutes, really before I could comprehend what he had just told me.  His comment to me - EXACT WORDS - "Don't worry about it, if we have to, we'll just zap you with a little radiation and you'll be fine".  The idea of radiation scares the crap out of me and the fact that the surgery was for nothing has me mad as hell.  I return for a six week follow-up visit next week and really need to figure out what's happening and what my options are, but I don't know what questions to ask.  I'm not dealing with this well, up until surgery I was a very healthy, active 58 year old, now I'm trying to deal with all the potential side effects of the next level of treatment (salvage??) as well as a limp, drippy male member.
Maybe someone could help me understand some of the information on my pathology report, it says:
 
Margin IS involved by invasive carcinoma (focally)
Perineural Invasion present
Lymph nodes not submitted
Diagnosis:
Prostate, Radical Prostatectomy:
  - Adenocarcinoma, Gleason score 3+4, occupying approximately 10% of glandular volume  + focally involving peripheral surgical margin
 
I need to know what to ask in order to help figure out what to do next.  My thought at this time is not to continue on with this hospital for additional treatment.  I have family in Sarasota, FL and I understand that the Dattoli Clinic there has a very good reputation for treatment after failed surgerys.
 
I hope someone here can help me understand what happens next and where I go from here on this very scary trip.  I don't even know enough to know what to ask.
 
Thanks,
 
Bruce

BillyMac
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Date Joined Feb 2008
Total Posts : 1858
   Posted 1/19/2011 3:14 PM (GMT -6)   
Unfortunately going in there is no way the doc is going to know for sure if the tumour is outside of the prostate so you have the benefit of hindsight in being angry that the op may not have eliminated all the tumour. Perineural invasion is very common with most patients and it appears the doc did not remove any local lymph nodes so they could be examined (somewhat unusual-------normally at least one or two are taken).The surgical margin has tumour present ------- focally meaning points of tumour rather than big areas are through where the surgeon cut. This does not necessarily mean the tumour will continue to grow ----- the cells may have been cut off from their blood supply and not survive. PSA is the key from now on. Your PSA at the 8 week mark following surgery will give you the best idea on how successful the surgery may have been. You could track it at the ultrasensitive level if you want an early idea of what may be happening.Most docs will not take any further action re. radiation till PSA reaches 0.2 if that is what happens. Do not despair on the leakage and ED front ------- time for recovery from these varies wildly from man to man and you are only a month or so out of the op. One last thing ----- make sure you get a copy of your post surgery pathology report for your records. Hope this helps a little good luck with your PSA.
Bill

Post Edited (BillyMac) : 1/19/2011 3:18:45 PM (GMT-7)


142
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Date Joined Jan 2010
Total Posts : 6896
   Posted 1/19/2011 3:52 PM (GMT -6)   
In addition to the post-op pathology report, I got a copy of the surgical report. It does not tell me anything about diagnosis, but did give detail of what they did.
 
The positive margins, as Billy mentions, are difficult to evaluate even after surgery. The Walsh book tries to give a little hope there, explaining that if the surgeon cut just at the edge, these cells could be the last on the edge (cut in pieces, thus the remainder being dead), and that the trauma can kill the cells very close.
 
I was not so lucky, as it was apparent that a large branch was cut, so my "remaining" cells were more than we wanted, so I was off to radiation.
 
The PSA at 8 weeks or more out is what my surgeon wanted to see (he felt that any earlier was too soon). In fact he did it at 7 due to holidays, but was very cautious to play down the importance. It came back undetectable (<0.1, not an ultrasensitive test), so lots of anxiety for nothing. Since I was already planning radiation, it was almost a non-event.
 
And Billy is also correct in that you have to think a bit before assigning blame to the surgeon for positive margins. I'm told, and from watching a video of a surgery, believe, that they can't tell visually if the tissue is cancerous or not. My surgeon said that this was the reason he would take wider margins, and not risk nerve-sparing. I had biopsy results that were very close to the capsule.
 
The next PSA is the important one. I would just try not to worry about it. Work on healing - it is important regardless of the results.
DaVinci 10/2009
My IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1147
   Posted 1/20/2011 4:18 AM (GMT -6)   
This is a difficult scary time for anyone in your situation, the weeks following surgery are hard - dealing with pain and the issues following surgery plus sometimes incontinance and ED.

The surgery was not for nothing, don't forget that the cancerous prostate is not in your body but sitting on a bench somewhere. The positive margins may or may not be an issue, as 142 and Billy say the post surgical PSA will help you work out where you stand.

The surgeon is certainly not a great commuinicator - his words seem very badly chosen. If you have lost your faith in him, perhaps it is time to find a better urologist.

I am surprised that that's all your pathology report says. The perineural invasion refers to the growth of cancer along a nerve. This is within the prostate. Some studies show that this has no impact on the probablity of recurrance.

Regards,
An
Husband's age: 52. Sydney Australia.
Family history: Mat. grandfather died of PC at 72. Mat. uncle died of PC at 60. He has hereditary PC.
PSA: Aug07 - 2.5|Feb08 - 1.7|Oct09 - 3.67 (free PSA 27%)|Feb10 - 4.03 (free PSA 31%) |Jun10 - 2.69. DRE normal.
Biopsy 28Apr10: negative for a diagnosis of PC however 3 focal ASAPs “atypical, suspicious but not diagnostic” for PC. Review of biopsy by experienced pathologist, 1/12 core: 10% 3+3 (left transitional), 1/12 core: ASAP (left apex)
Nerve sparing RP, 20Aug10 with Dr Stricker. Post-op path: 3+4 (ISUP 2005). Neg (margins, seminal vesicles, extraprostatic extension). Multifocal, with main involvement in the fibro-muscular zone. T2C.
Post RP PSA,
Lab 1: Sep10 – 0.02|Nov10 – 0.03|Dec10 – 0.03
Lab 2: Nov 10 - 0.01|Dec10 – 0.01

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/20/2011 7:06 AM (GMT -6)   
Wow, love the docs hit and run words given to you, nothing like quality time that you paid the tab for and should be getting. Billymac and others gave you some great info. This in between time of not knowing I like to call it : 'limbo land' or the Twilight Zone effect of PCa...you are in a world that is foreign to you and reality seems fictional in this whole mess. Reality and unknowns meet somewhere beyond the dimension of mind and space and time (no I am not Rod Serling, liked the old episodes thou). Learn everything you can is a suggestion, because these future episodes are all to real and we patients are the method actors, this reality show is unparalleled. Question everything as you look it all over, there aren't a bunch of retakes or stunt guys in these series. Best to you going forward, there are all kinds of possible treatments should you need them and recommend if you need them seek multiple opinions and learn all you can, so you might pickup on heavy bias, agenda or b.s...as they exist in this mix. As a fellow guy my guess is you would like to know reality and truthfulness on this as much as possible and not alot of glossed over sweet talk and anybody herein can understand the scariness with unknowns and dealing with this. My current Twilight Zone episode is almost year 9 now, you can see my stats...your stats probably were way less and better than where I started. Hey I still have a sense of humor even though I know whats coming down the road, someday in my particular situation.  Your situation is unique and different as all cases of this actually are, I don't believe you have to panic or anything like that if that helps you some. Learning more can only help you with possible choices and decisions.
 
 
www.yananow.net  (info, mentors, experiences)
www.prostate-help.org  (info)
www.ustoo.org  (support groups and info)
www.prostatepointers.org   (info)
www.paactusa.org  (newsletters-excellent)
Also look for books and other sources is a suggestion.
OH and Dattoli you mentioned is excellent for primary treatment and secondary, period.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35, ct and bone scans look clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed useage

Post Edited (zufus) : 1/20/2011 9:04:35 AM (GMT-7)

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