This blows me away

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TTaylor
Regular Member


Date Joined Nov 2010
Total Posts : 102
   Posted 1/6/2011 11:12 AM (GMT -6)   
I met today with my radiologist to begin the process for my radiation treatments. Something told me to take my medical records that I had made a copy of several weeks before. Since my robotic prostatectomy I have had a diverticulum  approx. 4.5 cm develop in the prostate bed area as a result of a small leakage at the bladder neck. It has been very painful and currently I am on antibiotics. Little did I realize my urologist had not made the radiologist aware of my condition. This blows me away to think my urologist could overlook something of this importance which could leed to severe complications. He had not even sent my current records to the radiologist  During the course of our conversation he mentioned it would not be prudent to have radiation and still not be healed properly. He mentioned some of the consequences that could result by having radiation to soon. I share this with you to let you know how important it is to be on top of your condition at all phases of treatment. Make yourself aware, knowledgeable and assertive. It could save your life.
TTaylor

Julietinthewoods
Regular Member


Date Joined Sep 2010
Total Posts : 309
   Posted 1/6/2011 11:57 AM (GMT -6)   
It does not surprise me at all. I can't tell you how many times our family has experienced similiar instances of what is, basically, human error and carelessness.

Thank goodness you were prepared!

Juliet

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/6/2011 12:02 PM (GMT -6)   
Amen
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

Jim is sick
Regular Member


Date Joined Mar 2010
Total Posts : 118
   Posted 1/6/2011 12:29 PM (GMT -6)   
I had a urinary blockage recently, due probably to a kidney stone. While discussing this with my urologist he asked me if I had ever had kidney stones before... The answer was yes, four years ago, you attempted to remove it, remember... Doctors are people too... Where are my glasses, uh what was I talking about? Be careful out there...
48, 5' 8", 210lbs, 160lbs
8-7-09, 3.22
11-13-09, 4.25
2-12-10, 32 cores. 3 reveal PCa, 10%, Gleason 3+3=6, T1C
12-6-10, 3.77
Current Treatment: AS, next appt. Jun. 2010. No meat, no dairy, lots of fruits, nuts, veges.

Preferred Treatment: I just want someone to harvest my immune cells, genetically engineer them to fight my prostate cancer, and then infuse them back into my body.

TTaylor
Regular Member


Date Joined Nov 2010
Total Posts : 102
   Posted 1/6/2011 2:14 PM (GMT -6)   
I just talked with the radiologist that interpreted my ct scan and he says I have a bladder prolapse. He thinks it doubtful it will heal itself because of the size 4.5 cm's. It is sitting in the prostate bed where the radiation is suppose to be targeted. My concern is how do you do radiation in the prostate bed when part of the bladder has taken over the area. Having spoken with 2 uros previously they said surgery was not an option. I guess I will have to keep on searching for someone that can interpret what needs to be done.
TTaylor
Age 67. Robotic prostatectomy 10/26/2010, due for RT in Janury 0f 2011. Eight of 12 lobes positive. Gleason Score 4+4=8, Margin envolvement was present with adipose tissue invasion and perineural invasion, glandular and stromal hyperplasia present,pT3 pNO and no evidence of metastatic adenocarcinoma. 1st psa after surgery Nov. 24, 2010 was .3
HT started Nov. 24, 2010.

BuiDoi
Regular Member


Date Joined Aug 2010
Total Posts : 234
   Posted 1/6/2011 2:29 PM (GMT -6)   
.
Thanks for the post..  A VERY sobering reminder that all aspects need to be looked at.
Also shows how complete faith in your advisers/specialists can cause you great drama, and that people are VERY foolish if they do not keep ALL the test and report materials - forever !
 
I would assume that had radiation be used on the irritated area of the bladder, then that would likely freeze the healing and create a permanent problem.  ..  Is that what was explained/suggested to you?
..
.

TTaylor
Regular Member


Date Joined Nov 2010
Total Posts : 102
   Posted 1/6/2011 3:13 PM (GMT -6)   
Thank you for your responses. I wish to address BuiDoi's question; The radiation oncologist did not have the current reports from my uro so he did not know my condition until I told him. He then opted not to do radiation until I had healed . The 2 uros I have seen have both told me I have a diverticulum probably located posterior to the bladder neck and in the prostate bed. They both felt surgery is out of the question. Now I call the radiologist that interpreted my ct scan speak with his secretary and explain my condition and the radiologist returns my call, only to tell me I have a bladder prolapse with 2" of the bladder sitting in the prostate bed. He doubts it will heal itself because of the golfball size. He says this could have happened during surgury but is not absolutely certain. I have an appt. with my uro in 2 weeks and I will explain to him what he does not already know that I have a bladder prolapse. Or maybe he does know and does not want to tell me.
TTaylor
Age 67. Robotic prostatectomy 10/26/2010, due for RT in Janury 0f 2011. Eight of 12 lobes positive. Gleason Score 4+4=8, Margin envolvement was present with adipose tissue invasion and perineural invasion, glandular and stromal hyperplasia present,pT3 pNO and no evidence of metastatic adenocarcinoma. 1st psa after surgery Nov. 24, 2010 was .3
HT started Nov. 24, 2010.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6898
   Posted 1/6/2011 3:16 PM (GMT -6)   
I guess I am not very trusting - didn't occur to me to think that one doc knows what the other is doing.
 
I was actually surprised that my RO had an update from the Uro.
 
But yes, anything that is not healed before you head off to IGRT may not ever heal correctly again - they sent me off to the colo-rectal guy to check some old issues before they would start.
DaVinci 10/2009
My IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

Post Edited (142) : 1/6/2011 2:19:37 PM (GMT-7)


knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 650
   Posted 1/6/2011 3:40 PM (GMT -6)   
TT, hopefully purgatory will weigh in here as your problem, though not the same root cause seems to be heading in the direction his went in, BAD! I think if it was me, I would go to a leading medical center for an answer, closest thing to that in my area is the houston medical complex. At this point it seems a bladder expert would be needed for an opinion. Others hopefully give some other places like johns hopkins come to mind though I don't have any personal experience with them. You are really in a hard spot now, and I hope you can get a suiotable plan for what to do next.
Ron
06-08 1st biopsy neg psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent after 3 mo. PT
ED, pre-op severe, post op total
10/10 Dr Boone, Baylor recomended AUS
AUS and IPP scheduled 1/11/11
post op psa's 0.04,<0.1,<0.1,<0.01@12 mo.

TTaylor
Regular Member


Date Joined Nov 2010
Total Posts : 102
   Posted 1/6/2011 4:54 PM (GMT -6)   
Thanks Ron for your post. I am at a juncture that requires a great deal of study. I am so disappointed that my uro did not get the full interpretation from the radiological report. The report suggested I had a cystocel like collection in the prostate bed. Upon further review I find a cystocel collection is a female medical term that explains the bladder falling into the vagina. With all due respect that ain't my condition. I can only assume my uro thought the radiologist was explaining a diverticulum when in fact it was a bladder prolapse. I am being treated for a condiion that does not exist. My next option is to directly ask my uro if he knows how to correctly access my condition or should he send me to Duke for a correct accessment. Hope the fishing is good in La. and I look forward to getting back on the creek in the not to distant future.
TTaylor
Age 67. Robotic prostatectomy 10/26/2010, due for RT in Janury 0f 2011. Eight of 12 lobes positive. Gleason Score 4+4=8, Margin envolvement was present with adipose tissue invasion and perineural invasion, glandular and stromal hyperplasia present,pT3 pNO and no evidence of metastatic adenocarcinoma. 1st psa after surgery Nov. 24, 2010 was .3
HT started Nov. 24, 2010.

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2457
   Posted 1/6/2011 5:03 PM (GMT -6)   
Business as usual, the right hand never talks to the left.
Age: 67 at Dx on 12/30/08 PSA 3.8
2 cores out of 12 were positive Gleason (4+4)
Davinci surgery 2/9/09 Gleason 4+4 EPE,
Margins clear, nerve bundles removed
Prostate weighed 57 grams 10-20% involved
all PSA tests since (2, 5, 8, 11, 15, 18 months) undetectable
Latest PSA test (21 months) .005
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