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Just got back from my doctor's visit - mixed news

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Just got back from my doctor's visit - mixed news  
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Posted 6/22/2009 10:11 AM (GMT -7)
For starters, I thought my appt. was for 1330 today and it was at 1000.  Got there at 1130 and they were able to fit me right in with minimal wait.  The latest PSA jumped up less than either myself or the doctor expected.  This was a 6 week PSA after my 6 months result.  It rose only from .10 to .11.  He said it was in the range of a normal plus/minus for the test, so it may or may not have actually risen.  Definitely not doubling quickly as first thought.
 
He did another DRE on me, second one in 6 weeks, so don't think they go away once you have surgery, lol.  Didn't hurt, nothing there for him to feel anymore, but he wanted to be sure, and he said they still do biopsies after the prostate is removed, surprised me,  he said they do a finger guided single core biopsy if they feel anything.
 
He scheduled me for another PSA with him in 3 months, but instead of waiting the 3 months and hoping it doesn't start shooting up during that time, he is sending me to a good radiation oncologist in Greenville, one well experienced with PC in particular.  That first consultation is on my birthday, July 13th.  This dr. may or may not schedule more advanced tests or want to do their own PSA, which my dr. said is fine with him.
 
We talked about residual healthy tissue producing trace ammounts of PSA, he said it is rare but has seen it in his 30 years of practice.  He said he has also seen post surgery patients get psa as much as .40 and never go higher, and never show any evidence of true reaccurance, so like so many things with PC, never any set rules or consistencies.
 
I feel somewhat better, not so doom and gloom at the moment.  I think going ahead and talking to the radiation people will be a good step instead of sitting around and worrying about the next PSA.  My dr. is concerned that radiation could give me bad problems with urinating, since I have such a bad history of closure at the bladder neck and all the cath time I went through.  As usual, it is what it is.  I did tell him that my anixety the past six weeks was the worse I have been through since I started my PC journey, he did seem concerned and aware of what us mere patients go through.
 
So that is the latest from me.  At least it was a much smaller rise than expected.
 
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 doubled in 3 months, new test in six weeks, then possibly off for salvage radiation
 
 

Posted 6/22/2009 10:24 AM (GMT -7)
Cautiously good news. The onco/rad consult is timely and following a good course, IMO. Good thoughts and prayers going your way, brother.
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
21 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months

Posted 6/22/2009 11:09 AM (GMT -7)
What the heck. For now lets call it rounding error and good news. After so much worry it is good to hear and we will keep you in our prayers.

When I think of rounding error I remember that for Bill Gates $1,000,000 is just rounding error. For you, we should at least get PSA 0.01 as error.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3 + 4 = 7
CAT scan 1/09 negative, Bone scan 1/09 negative

Robotic surgery 03/03/09 Catheter Removed 03/08/09
Post surgical pathology report. Lymph nodes negative, Seminal vesicles negative
Surgical margins positive, Capsular penetration extensive Gleason 4 + 3 = 7
At 6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.

Posted 6/22/2009 11:28 AM (GMT -7)
Good news for now David...not sure if it isn't more like a double edge sword though. Neither going up or down, just places this whole ordeal in limbo for the next couple of months. I know you will have the patience to see this through...I know it must be really tough on you mentally.

Hang tough...you can beat this.

Best wishes
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

Posted 6/22/2009 11:52 AM (GMT -7)
Are any of you guys looking at clinuical trials? The NIH has some listed for high risk PC patients. High risk as in high gleason, EPE, positive margins, etc.

I haven't herad anyone on these forums talk about them. My URO is advising me to look at one.

OF all places after the post yesterday about Phillidelphia VA, some are offered at the VA.
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
Thankful for early diagnosis, and U.S. healthcare
Living the Good Life, cancer free
6 week PSA undetectable. 

Posted 6/22/2009 12:12 PM (GMT -7)
I think it is good news, David,
While your Uro would like to wait a few months, I agree with the suggestion that you seek an RO. And when you are there ask for another PSA. If this get's any higher, there is no need to wait on the radiation. And there won't be any harm having it sooner rather than later. This is moving very slowly, so that is indeed a silver lining...

Tony
 Age 46 (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!

Posted 6/22/2009 12:54 PM (GMT -7)

Squire David:

I read this as glass half full for sure!  And, as the other guys suggest, this is surely rounding/within test tolerances/etc.  It's probably not a bad idea to go ahead and meet with the rad doc but, since the PSA reading is still so low, I doubt anyone would suggest added treatment at this time.

Anyway, I'm certainly glad the news was not worse and I still pray you are cured!

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 6/1/09.  6 month PSA now at 1.4 and my docs are "delighted"!
Posted 6/22/2009 1:42 PM (GMT -7)
Thanks one and all, above this post. And Tud, the thrill of having PC, is that there isnt any thing normal or consistent when dealing with it, we all know that. I feel like I have the sword off the top of my head for now, certainly isn't over with by any means, but it does kind of slow down the negative pace it seemed to be going before.

And yes, I am not waiting for some magic number before I would agree to radiation, if it shows any indication of going upward still, I am sure I will opt for that while the best window of opportunity for getting it is there.

My dr/surgeon is already concerned with the difficulty he had with me with the bladder neck/urethra connection and all my cath time and the corrective surgery to that area, it may be risky having radiation. He said he would consult directly with the RO and bring him up to speed about my particulars. That sounded like a good thing to me.

Kind of a mixed bag day for my news, not all good, not all bad, not as bad as I and my dr. was expecting, so it gives time for more opinions, more tests if needed, and coming up with a new secondary treatment plan if it proves needed.

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
 
 

Posted 6/22/2009 2:33 PM (GMT -7)

Hi David,

Within testing errors, your PSA may not have gone up as suggested by your doctor and this can be viewed as good, in a guarded sense. IMO, seeing a radiation oncologist that specializes in PCa is a logical next step. I hope you will never need to start any radiation therapy...for me, listening to their opinions and recommendations gave me a better understanding of what can be expected if further treatment options are needed. Stay strong.

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. 

Posted 6/22/2009 3:30 PM (GMT -7)
Mike,

I am doing my best in that department, trying to keep it together. I just didn't want to wait 3 months, do another PSA, and have it jump up, and not be prepared. Seeing the RO in between will give me the chance to explore the options and the potential outlook.

My doctor told me that the radiation I had done to my throat 10 years ago is some of the most brutal radiation you can get, and if I needed salvage radiation for this PC, it would be no where near as tough as what I went through. He said throat/neck/head radiation is very rough, with long lingering side effects like I have endured the past 10 years. That actually gave me some comfort, and it helped him understand why I was eager for surgery, but spooked about having more radiation. Helps to communicate freely with your health providers.

And the RO he is sending me too is suppose to be an expert specifically with prostate cancer cases, so that sound good to me.

Thanks for all your concern, almost called today, but didn't want to bother you.

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
 
 

Posted 6/22/2009 4:38 PM (GMT -7)
Greetings, David.  I definitely see this as a glass half full outcome.  The .01 increase is definitely within the margin of error.  I applaud your proactive desire to go ahead and see  the radiation doc just to see what he says.  He may very well say nothing is needed,  but if he does want to do something you are still in the early stages where it can do the most good.  Good proactive way to treat this. We will continue to pray for the best outcome.  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
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me

Posted 6/22/2009 7:17 PM (GMT -7)
Thank you, David, from David (too many of us here). My dr/surgeon didn't even try to resist my urge to see a RO asap, he thought it was a good idea too, but he was also comfortable with me waiting 3 months for another PSA test. I went cold on that idea, not the test, but waiting around and doing nothing for 3 months. At least this way, I can get going with the RO, see what he/she thinks, get a different perspective of the whole thing, and when and if RAD is really needed beyond a doubt, I will be in good hands already, and not doing it in a state of panic. I think what happened today was a good compromise and meeting of the minds. The one thing I love about my dr, is when it is your turn with him, its like he oblivious to the time and clocks, he's never in a hurry, and he let me go on and on with my endless questions, worries, and concerns. That alone keeps him in good standing with me.

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
 
 

Posted 6/22/2009 7:55 PM (GMT -7)
David-
It can always be worse and always be better right?!? Glad your news was not worse and hoping things continue to keep on getting better. Wishing you continued good health and peace!
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

Posted 6/22/2009 8:20 PM (GMT -7)
Hey David, glad to hear the good news,  i am new to all of this but i would focus on what he said about the range of a normal plus/minus  so it may or may not have actually risen and also he has seen post surgery patients get a psa as much as .40 and never go higher, and never show any evidence of true reaccurance. That sounds good to me. Stay positive.         
                                      Regards Jake

Age 56

DRE 12/22/08    PSA 1/5/09  3.4     PSA 2/16/09   3.8

Biopsy 3/9/09    3 out of 12  positive

one core 80%   one 40%  one 2%   gleason 7

di vinci robotic surgery at Mount Sinai New York 4/23/09

Dr. Samadi Chief Division of Robotics

65% involved,  margins and nodes clear

both nerves spared     catheter out in 1 week 4/30/09

6th week post surgery psa on 6/9 09  0.01

ED no problem (without meds)   incontinence another story still using 4 -5 pads a day

 

Posted 6/22/2009 10:42 PM (GMT -7)

Hi David,

Interesting we both got news of a little elevation in our PSA the same day.

I read an article today that John's Hopkins doesn't worry too much until a PSA rises above 0.2 post-prostatectomy yet I think it is very good that you are checking in with the RO to be better informed.

Hang in there!

All the best to you in your quest for better health!

Barry ~ (a.k.a. "Idaho")

 

Da Vinci Surgery July 31, 2007… 54 on surgery day
PSA 4.3  Gleason 3+3=6  T2a  Confined to Prostate

1st PSA  09/11/2007  <0.04 (undetectable)

2nd PSA 12/10/2007  <0.04

3rd PSA  03/17/2008  <0.04

4th PSA  06/17/2008  <0.04

5th PSA  12/15/2008  <0.04

6th PSA  06/22/2009  =0.062 (doc says don't worry yet)

My web site: http://pca-info.blogspot.com

Posted 6/23/2009 6:09 AM (GMT -7)
Daughter, thanks and my best to your father.

Jake, I will have to wait and compare the notes of the Radiation Oncologist when we meet and see if they feel the same way.


Barry, it was my dr (urologist/surgeon) that made the suggestion, he has no hesitations of getting other opinions, he wants what is best for me.
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
 
 

Posted 6/23/2009 7:28 AM (GMT -7)
Hi David,
 
It's great to have a doctor that is open-minded and is solely looking out for your interests.
 
I hope you have a great day!

Barry ~ (a.k.a. "Idaho")

 

Da Vinci Surgery July 31, 2007… 54 on surgery day
PSA 4.3  Gleason 3+3=6  T2a  Confined to Prostate

1st PSA  09/11/2007  <0.04 (undetectable)

2nd PSA 12/10/2007  <0.04

3rd PSA  03/17/2008  <0.04

4th PSA  06/17/2008  <0.04

5th PSA  12/15/2008  <0.04

6th PSA  06/22/2009  =0.062 (doc says don't worry yet)

My web site: http://pca-info.blogspot.com

Posted 6/23/2009 8:58 AM (GMT -7)
Is my dr. perfect? Of course not, he poops like the rest of us, but he is well read, up to date on things, perfect patient and bedside manners, very patient with me when we talk, and most of all, very experienced, 30 years plus. And he is only 2 minutes from my house.
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
 
 

Posted 6/23/2009 11:11 PM (GMT -7)
David,
I have just seen your update and was pleased to see that the change (if it could be called that) was infinitesimal...........well within the area of testing error. As you have pointed out because some have biochemical relapse does not mean that the cancer has reoccured or will progress. Nothing is set in stone with such a variable disease. I think you are wise in talking with the radiation guy, for even if nothing comes of it, knowledge is never a waste. I must say I do like the sound of your doc.
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

Posted 6/24/2009 7:12 AM (GMT -7)
Billy,

Being married to a sharp nurse has helped me have a good record of picking very good doctors. Nurses know who is and isn't sharp, who has good and bad reputations, etc. Plus I do not live in a large populated area, so its not hard to find long time patients that know certain doctors. Believe me, there are some terrible doctors around here, don't know how they keep their credentials. Best to you, mate.

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
 
 

Posted 6/27/2009 6:39 AM (GMT -7)
I believe the word cautious optimism. I am happy to hear the news. I know from personal experience the mind can run a thousand mile per hour speculating before the results ar known.
 
Age 49
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
12 month  PSA <.04 (low as the machine will go)
continent at 10 weeks (no pads!)
ED is still an issue but getting better

Posted 6/27/2009 12:16 PM (GMT -7)
rob, i think all of us with cancer play that cruel game with our minds
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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