Just Back from visiting Radiation Oncologist

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 7/13/2009 1:38 PM (GMT -6)   
My wife/I are back from the consultation visit with the Radiation Oncologist.  The dr. I was suppose to see was in surgery, and the one I saw was the one that handled my previous radiation treatment back in 2000.  He is also the most experienced at this practice.
 
For starters, I am very angry at my urologist/surgeon, who as you know, I always speak well on this site.  The pathology report that I had prior today isn't even the full one I was told when it was given to me after surgery.  This dr. today had the full one, and instead of being squeaky clean, it clearly showed a positive margin on the left lobe, when I was told and had beleived for 8 months was clean.  I will take both copies to my urologist later this week and demand an explanation.  I think he knew there was a potential problem and was gambling that I would be the 50% that wouldn't have reaccurance.
 
Bottom line, the Rad. Onc. had looked at everything, and says he is 100% certain there is reaccurance, and he strongly believes it will be contained to the prostate bed.  He wants to start 35 rounds of radiation with a total gray of 70-72.  Even though my last PSA was .11, he said there was no good reason to sit and watch it go up.  The sooner it is treated, the best the chance of a cure.  He said (about 25 years of experience btw) that .5 is the magic number that you never want to go over for salvage radiation.  So he said waiting 2-6 months for additional PSA tests isn't going to help my case, and it would be a gamble with my history of PSA velocity that it might jump over the .5 mark before then.
 
He wants to consult with me again next Monday, and set a time frame and schedule for the radiation.  He does not feel the need to combine any hormone treatment with the radiation treatment.
 
To put it into perspective, he said I had approx. 1/100th the ammount of cancer that I had prior to surgery.  He said from looking over my case, he would have reccomended surgery back in November like I had, and he would have had surgery himself.
 
I wasn't surprised at today's news, that's the trouble when we research and study PC so much, but I was disapointed.
 
Got a lot to think about here, once again.  We did discuss side effects, and he, like myself, is really concerned with my past track record, I may have a difficult time with blockages and such.
 
Great way to spend my birthday!
 
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, 5/9 .10, 6/9 .11, July 13 - meet with radiation oncologist
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 7/13/2009 1:51 PM (GMT -6)   
David,
Have you had a top center look at that pathology yet? I mean someone like Bostwick or Epstein. Just curious...It probably does not cvhange the next steps much, but it might clue you over to hormone therapy. You have spoken well of your urologist, but you have had quite an unusual experience with him. Perhaps it is simply time to move on from him and follow the guidance of the oncologist and radiologist.

Happy Birthday...I know you will be well, just follow my motto...stay positive!

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 7/13/2009 2:10 PM (GMT -6)   
All of us would much rather be celebrating than advising.

I don't see what good a review of the path would do. The issue seems to be the rising PSA and the question is what is the probability that with waiting the PSA would go down. If you have doubts then this looks like a clear case for a second opinion and perhaps a chance to compare treatment plans.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 672
   Posted 7/13/2009 2:27 PM (GMT -6)   
Hey David, Sorry to hear that. Maybe it's time to move on as Tony suggested. I agree with you about being pee'd off at your surgeon for not having/disclosing the full path report with you. I'd be livid too, and would want a proper explanation. It doesn't change things, unfortunately.
Good luck my friend.

Mike
Lower left groin hernia: mesh and large scar: surgery early 2006
Nov/Dec 07 and March 08 and now Dec 08: Severe perineal pain (between scrotum and rectum). Septra/Bactrim for 8 months (Nov 07-Jun 08) for diagnosed prostatitis.
PSA start of 2008: 5.3..... PSA June of 2008: 7.3
14 DRE all benign or nothing felt
TRUS Biopsy Nov 08: Got copy of pathology (see below). Prostate about 40 cm sq.
General Health: pretty good, 5' 10", 180 lbs, slim.
Bone scan Dec 08: Negative
Barium enema X-ray (March 09 due to several days of blood in stool)
MRI with endorectal coil (April 09 as part of a study)
3D advanced TRUS (April 09 as part of a study)
CT (April 09 as part of a study)
Biopsy Pathology: 5 of 8 cores positive, adenocarinoma in both lobes. 30%-65%. One core perineural invasion. 2 cores "foamy" and suspicious. All +ve cores, 3+3 GS 6.
Open RP surgery: May 5/09 Surgeon spoke to my wife and was very positive. Said both nerve bundles spared and not damaged. Bilateral lymph node dissection performed. Discharged 48 hours after surgery. Staples out, catheter out and pathology sheduled for May 21.
Post Surgery Pathology: pT3a N0 MX, extraprostatic extension (EPE), stage III prostate cancer, lymph nodes clear, seminal vesicles clear, Gleason upraded to 3+4 GS 7. EPE within surgical margins. Other than prostate and EPE, all tissue removed negative for cancer involvement.
Physical State: Getting back to working out slowly. Urinary control pretty much from the time of catheter removal. Rectal pain, sometimes bad but, told is normal. Erectile function at best 25-30% of presurgery. Trying Levitra...first 10 mG dose gave me nasal congestion, 50% chubby and a 24 hour headache...may go away with more use or change of meds. Considering pump. Recovery from surgery going very well.
Mental State: Pre-surgery anxiety gone. Positive attitude. Some anxiety about seeing radiation oncologist and upcoming 3 month PSA. 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 7/13/2009 2:30 PM (GMT -6)   
A second review of the pathology could change the Gleason or stage. If the cells escaping were grade 4 then HT is logical. If a review changes his Gleason to >/= 8 then HT. Studies show that salvage RT is more effective with HT in high risk cases. I fell into that catagory by being 4+3 with 3B staging. David was told he did not have positive margins, and was T2 with Gleason 7...not a high risk case. But T3 G7 is. And G8 any stage is also. Although I elected to have RT and HT before a rise, it is well documented that early intervention to potential systemic disease is better than later intervention after PSA rising. At this point, a second opinion of the pathology makes sense.

Probably not a bad move for you too, geezer. A second look at the pathology is never bad advice. It might not change the protocol, but then again, it might...Mine was reviewed by City of Hope and Jon Epstein at JHU...

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 7/13/2009 2:55 PM (GMT -6)   
David...some questions for my own knowledge...do you know the size or area of the positive margin. My curiosity stems from my own 3 mm margin. (so I follow your journey closely) And Tony is right about looking into another review. The biggest problem is that with a positive margin there isn't any possible way to determine if there was EPE at the margin. Thus staging between a T2 and T3 is very difficult unless the EPE was clearly visible in another area beside the margin area.

I know you don't want to go this route with radiation, but with the velocity from your stats, I would really think about the hormone therapy and the benefit when combined with radiation.

You have to fight this battle one more time...why not give it everything available to you.
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 w/PNI - 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


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4083
   Posted 7/13/2009 3:12 PM (GMT -6)   
David::
 
I agree with Tony 100%.  Please take the time to make sure a top lab has looked at your path report.  Also, I think you should be LIVID at your uro.  I remember some other issues you had earlier, e.g. he switched stories about whether or not he spared the nerves.  If  I were you I would kiss him goodbye forever.  I'm not kidding, Squire, it's time for you to find someone more competent!!
 
Next, I hope you will take the advice that I've seen you give...i.e. now it's time to get the opinion of a PROSTATE ONCOLOGIST.  Not a uro-doc, not a rad-doc, but someone who will give you the unbiased advice that you desperately need at this point.
 
I know you must be terribly upset now, but we're all with you and I know several of us so inclined are saying some prayers for you.
 
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 7/1/09.  6 month PSA now at 1.4 and my docs are "delighted"!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 7/13/2009 3:23 PM (GMT -6)   
Tony and Les, you ask good questions, I am not opposed to another opinion, or two, don't even know how to go about getting another review. It won't change anything. The Rad. dr. did say it was good to see that the 4+3 dropped to a 3+4, in his experience, it can make a major difference in treatment response. My record of PSA velocity is the big concern, both pre-surgery, and now post surgery. I still need time to fully digest the full pathology report.

Thanks Mike and Geezer!

I just want my beloved urologist/surgeon to come clean with me out of sheer principle, I am owed that. I totally trusted him and he has a great state wide reputation, perhaps there is another explanation that I am not seeing?
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, 5/9 .10, 6/9 .11, July 13 - meet with radiation oncologist
 
 


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 7/13/2009 3:32 PM (GMT -6)   
Really sorry to hear about your situation. I am one step behind, being advised to have radiation because of my Geason 9. I am having a hard time pulling the trigger.

Has anyone used Doxatacel or heard of anyone ? I am considering a trial as opposed to radiation.

Best of luck and hoping those suckers are laying there in the prostate bed, taking a nap.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 7/13/2009 3:41 PM (GMT -6)   
goodlife,
The correct spelling is Docetaxel and I am very familliar with it. The brand name is Taxotere. It is used with prednisone for intravenous chemotherapy for prostate cancer. I know many guys who have been on it, and I have studied it extensively for myself. I declined it when offered a trial right after surgery. I did not like the side effects of it, there are many including hair loss, fatigue, and neurosis in hands and feet. The reason I declined was the neurosis possibility. I am a 35 year guitar player and I did not want to lose that unless it was unavoidable. Taxotere could still be in my future, and is likely the next step should I have a climb in my PSA while still on HT.

With a G9 stage 3 cancer, it is not unreasonable to consider this option. But if it were me, I would do the radiation with hormone therapy before jumping into the Taxotere. In fact, that's where I am in treatment...

You should start a new thread for this discussion. I will be happy to point you to the members here and elsewhere that have experience with Docetaxal...

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 7/13/2009 3:49 PM (GMT -6)   
Hi David, seems a bit much, but Happy Birthday anyways. I pray when you look back on this birthday 20/30 years from now you'll recognize it as the turning point and be able to see it as truly a happy day. In the mean time what crappy news. I can't begin to advise you as others can on PCa, but on human relationships none of us has the magic answer, so I'll hop in here.

I think you should ask your beloved urologist/surgeon how come, best you can tell, the reality of your situation is so different to what you'd understood him to say. You'll note the suggestion contains two qualifiers, 'best you can tell' and 'understood.' I believe your best exchange of information with him is going to be if the discussion is a non-confrontational one, as much as you'd like to bonk him on the nose, just for openers. The object of all of this has to be getting the information you need to make the best decisions you can. Not venting steam, as much as you deserve to vent stream. It may be, as you suggest, that there is another explanation you're not seeing. Your greatest good can only come from understanding him and how he sees things. It may be that afterwards you decide to move on to someone else, or it may be that he has a perspective that you'll value as part of your decision making. It's okay to let him know that you find the apparent discrepancy upsetting, but the key is that it is the discrepancy and uncertainty that is upsetting, not him.

I wish you luck, and look forward to hearing what he has to say.

Many happy returns,

Sleepless, AKA Sheldon
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good  


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 7/13/2009 4:16 PM (GMT -6)   
Here are some hard words -- please accept them as from someone who cares and is in great sympathy with you

I guess that I must warn you against what my wife calls “carrying battery acid in a flesh bag” If you want to have revenge against your surgeon then I must tell you that vengeance does not belong to you. If you want to tell your surgeon about YOUR pain and YOUR disappointment then that is a different story. The difference is between feelings and accusations.
So, why would I give you such advice? Because the ultimate issue is not your doctor but yourself. Facing your feelings is important to healing – much more important than what your doctor thinks or feels.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 7/13/2009 4:19 PM (GMT -6)   
Hello David,
It is extremely disappointing to read that the urologist did not give you the full details of the pathology report and I do remember you mentioning his "couldn't save nerves" and "saved nerve" confusion following your surgery. He may have an explanation but it sure is difficult to understand. He must have seen the reference to the positive surgical margin in the report so it is inconceivable that he neglected to tell you. After digesting much of Tony's information some 8 months after my surgery I had a consultation with a radiation oncologist and a medical oncologist about the advisability of adjuvent treatment because of a focal EPE (but surgical margins were negative). They both advised a watch the PSA at ultrasensitve level before pulling the trigger but did have the pathology examined again. This report contained the additional information that the focal EPE was comprised of grade 3 cells (this information was missing in the initial post surgery pathology) as well as downgrading the Gleason to 4+3. I would agree with Tony that it would be worthwhile to ascertain the grade of the cells at that margin as well as obtaining, if possible the DNA ploidy of those cells as well. If it is a re-occurance, it will give you a clearer picture of what you are dealing with and may influence your decision of the timing of future treatment. Remember, we keep telling each other "get all the information we can before committing to a course of action." I understand your reluctance with radiation following your earlier experiences.
I wish you the greatest success with many, many more birthdays to come.
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 7/13/2009 6:27 PM (GMT -6)   
Billy, thank you for you wise words, will consider all this.

geezer, I am not interested in anger or retaliation, etc, I just filled I am owed a reasonable explanation why the surgeon, whom I had complete trust, did not fully disclose what he obviously knew. I expect nothing from him.

sheldon, i have moved on from the surgeon, he has passed me on to the radiation folks now, nothing more he can do for me. as they say, had his chance, muffed it. just didn't expect to use my second line of defense 8 months after surgery.

good life, thank you

tud, kind and good words from you as usual, i dont want to waste a lot of energy on anger when i still have a fight ahead of me. just want a reasonable explanation from my ex surgeon, who again, is considered one of the best in my entire state by reputation
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, 5/9 .10, 6/9 .11, July 13 - meet with radiation oncologist
 
 


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 7/13/2009 6:54 PM (GMT -6)   

Greetings, David.  First, Happy Birthday - I'm confident that is just one in a long string awaiting you. 

I find it almost incomprehensible that he gives you the incorrect information on the nerve sparing and then even worse than that he gets it wrong on the margin pathology.  It probably doesn't do much good to be angry, but I would want to hear his explanation and then I feel confident I'd be moving on - both mentally because their is nothing to do but prepare for the next treatment and physically because I wouldn't want a doctor like that on my case. 

I have great respect for Tony and the research he has done and knowing just what the pathology is would probably be important to me - particularly if I received a different report everytime I saw my surgeon.  Once and for all, it seems good to know just what you had and what you are probably facing in further treatments. 

David, one thing I have learned from you over the last several months is to face whatever comes up and battle it head on.  I am confident you will do just that.  We'll be praying for you in these days.  Please do keep us posted on how things are going.  David


Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me


maldugs
Veteran Member


Date Joined Jun 2007
Total Posts : 784
   Posted 7/13/2009 7:16 PM (GMT -6)   
Hi David, sorry about the news, it is puzzling why your urologist said nothing about the positive margin, I too would be angry under the circumstances, my urologist sent me for radiation as soon as my PSA would not go down from 0.5, I wish you well with the radiation, all went well with me, except for a few bowel probs, funny thing is after all the radiation my PSA is still 0.5 next PSA 30th July...we will see, all the very best to you.

Regards Mal.
age 67 PSA 5.8 DRE slightly firm Rt
Biopsy 2nd July 07 5 out of 12 positive
Gleason 3+4=7 right side tumour adenocarcinoma stage T2a
RP on 30th July,

Post op Pathology, tumour stage T3a 4+3=7, microcsopic evidence of capsular penetration, seminal vessels, bladder neck,are free of tumour, lymph nodes clear, no evidence of metastatic malignancy, tumour does not extend to the apical margins.

Post op PSA 0.5 26th Sept.
PSA 23rd Oct.0.5 seeing Radiation Onocologist 31st Oct.
Started radiation treatment on 5th Dec, to continue until 24 Jan. 08.
Finished treatment, next PSA on 30th April.
PSA 30th April 0.4
PSA 30th July 0.5
PSA 27th Oct 0.4 (I am now 68)
PSA 11th March 0.5


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 7/13/2009 7:17 PM (GMT -6)   
David CPA, thanks for you words too. I am moving on, can't go backward (though I wish), and don't want to not do something to save myself, so onward I go, whatever difficulties that may entail.

I too learn from our brothers here, each with their own experiences and point of view.

My surgeon/dr claimed to like educated patients, but perhaps that was a guise too, all I know was the single sheet of paper he have me as the post surgery pathology report is now 3 pages long, and the rad oncologist brought it right up on his computer, printed it off and handed it to me, and the practice he is with has absolutely nothing to do with my urologist/surgeons practice. Very interesting indeed. It's hard not to think there was some deliberate coverup or failure to disclose all that I asked.

Thank you though,

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, 5/9 .10, 6/9 .11, July 13 - meet with radiation oncologist
 
 


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2457
   Posted 7/13/2009 7:21 PM (GMT -6)   
Sorry for the bad news. I can't add any new suggestions to what Tony and others have said but with all the confusion about the pathology report, getting a second opinion from a reliable source is important. Anyway, Happy birthday and stay positive. You will beat this beast.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
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 Dr 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
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 7/13/2009 7:22 PM (GMT -6)   
Dear David,
I just logged on after quite awhile, and read your post...Very sorry to hear of it....However, first of all, 1/100th of the original cancer is very little....2nd, it can probably stay that way for a long time (years), 3, you don't have to make any decisions right now....(I don't understand the doctors saying .5 is the marker,'as you know, Pete has had seeds, external radiation, and lupron, PLUS the salvage SURGERY.....,and his PSA the last one in FEB is .7, and he isnt doing anything right now....We arewaiting this time for a little while....These doctors want to jump right in and do something.....I'm not sure of that anymore....I am trying to get him to have another PSA and see the oncologist, but he is waiting awhile....He has kept the cancer thing on the back burner....I dont know whether that is OK or not, but for him, it is at this point. He was so badly damagedby the radiation and then the subsequent surgery that he is gunshy...

This Pca is a devil....It takes you on its own terms....It also takes wives with it....We are here for the ride. It isnt fun...and it can be life changing...It is a cross to bear, and it can be heart rendering......The saddest part can be the loss of intimacy.....HOWEVER, it makes you both more aware of the fragility of your love and your lives...It can bring you closer in more ways that you ever thought...or just the opposite. It is a fiend.

" Every moment is enormous, and it is all we have... Our life is a path of learning to wake up" annonymous

Your friend, Diane
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and 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 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Hip replacement total success..pain gone!!
PSA .7 2/10/09
waiting for new PSA 7/09


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 7/13/2009 8:33 PM (GMT -6)   
David, this is, to me interesting. The one page, three page. From what I've seen of these documents they start at the start and go to the end. In other words, if someone gave you the first, the last, or the middle page, you'd know it was only partial.

I conclude your one page given you by the surgeon looked complete, all bases covered, but it seems to have been a summary (I assume) of the full report, and perhaps not such a good summary as a couple of critical items were missing.

Is it possible that your surgeon (given his reputation, etc.) wasn't hiding anything from you, at least anything he knew about. Might he not have been given by the lab only the one sheet? That it looked like the whole report. That there wasn't an obvious part missing. That he accepted it, as you did, as being the whole story. Might he be as enraged as you to find there were three pages! Two more page of information he didn't get either?

Given the paper work mess ups in medical facilities (the hospital I was in made the patient take a pen and mark on them where the surgery was supposed to be because they'd learned NOT to trust the paper work) it seems a logical explanation of how and why a top surgeon would give you information you later found to be incorrect.
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good  


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 7/13/2009 9:23 PM (GMT -6)   
ED C - thank you

Diane - good to hear from you, no, I don't want to feel rushed this time for sure. My wife was with me today, her choice, and even though she is a nurse and use to be around morbid things with the elderly, I think it kind of scared her to hear the unfiltered straight talk between myself and the doctor. Give my best to your dear Pete for me.

Sleepless - who knows at this point. I can only assume I was given an early summary sheet. It's odd that the new Rad. Oncologist gives me the whole thing right off his computer, and there is no association or connection between the two doctors or their practices.
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, 5/9 .10, 6/9 .11, July 13 - meet with radiation oncologist
 
 

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