Up date from PSA test and Uro Visit - another setback

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Purgatory
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Date Joined Oct 2008
Total Posts : 25364
   Posted 2/28/2011 5:12 PM (GMT -6)   

Well, certainly didn’t get the good news we were hoping for.  I will give you the bottom line first, in those six months, my PSA post-SRT has gone from .06 to 1.20.  Nope, not .12, but 1.20.  If my math is correct, that is a 2,000% increase.  Of course they drew blood for a re-test, but we have used the same lab for 9 years now, and they have never made a mistake before.

The doctor and I were fully expecting an increase during this period, but not this much of an increase and so fast.  I am still in a bit of shock to be honest.

Several things are going to happen next.  Thursday, I am having a special kidney test ran, to make sure there is no scarring taking place since my last surgery.  Next Monday, I am having a full body scan done, with an emphasis on my right inner hip where I have been having all this chronic pain the past 2 months.  We are not expecting it to find any metastasis, but it needs to be ruled out.  Sonny, if you are reading this, you will know exactly what I mean.

Unless the PSA really continues to skyrocket, he wants 3 months checks without exception, and already making arrangements to see if we can go over my case with a good medical oncologist.  I would prefer to use the doctor that treated men 11 years ago on the previous cancer.

He does not recommend jumping into HT or any other kinds of drugs at this exact moment, he knows my personal feelings on the subject.  That option is lying out there if needed, and if I consent.

As usual, he is never in a rush with me, once in the room, we spent a full 35 minutes going over everything.  He never rushes, and fully explains any questions I have.  He is very aware that I come here on HW, we have talked about it many times before.

Even though I am considered healed from the urostomy surgery,  he wants me to continue with the physical therapy due to the chronic fatigue issues, the dizziness, and the hip pain.  So far, my BlueCross doesn’t seem to mind, they are paying 100% for the therapy without question.

I did ask if there was any way my post surgery pathology could have been wrong, as my case has acted more aggressive than a lot of T2C cases, but he doesn’t think so, but if I wanted to have a second reading by any other pathology group, we could do it.

Zufus, if you are reading this, he talked about the many strains of PC, and how there is no sure way of knowing what one is dealing with.  My case and journey does give credence to the problems associated with extreme PSA velocity as I have talked about all along.  My doctor feels this is the case.  I had BCR in 9 months after surgery, and now have SRT failure confirmed at 15 months post.  Pretty convincing.

That’s the scoop right now.  Don’t know what to say, or what the future holds for me.  Glad I got a good, caring doctor on my side, and as usual, he’s not trying to rush me into anything.  Next PSA test is already set up for May.  As soon as the kidney test and bone scan comes back, he said he would contact me.

Disappointed, but hardly surprised, David in SC


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 2/28/2011 5:24 PM (GMT -6)   
David, so sorry to hear of the news, but glad to see some plan coming together. Hang in there, guy.
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RP, Path: pT2c, 110 gms., clear except:
Probable microscopic involvement-left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09, 12/10-.09, 02/11-.08
ED-total-Bimix 30cc

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2649
   Posted 2/28/2011 5:25 PM (GMT -6)   
Sorry to hear those numbers, David.  I was sure hoping the news would be better.  The thing that comes to mind is Dan Rather's sign-off:  "Courage."

Trepidation
Regular Member


Date Joined Feb 2011
Total Posts : 173
   Posted 2/28/2011 5:32 PM (GMT -6)   
I hate reading that David! Maybe talking to a hormone specialist will aid. I called a guy named Richard Profit at PAACT recently about that very thing and a nice guy.
I just can't get over your tough journey Sir. Maybe a new Dr. is in order, I don't know but pray that you find answers. You have been through so much!
 
 

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 2/28/2011 5:33 PM (GMT -6)   
David,
I am sorry for the news. It seems like that since you started out that without bad luck you have not had any luck at all. I think a good prostate cancer oncologist is a smart thing to do. Good luck in the coming months. I know how resistant to hormonal therapies you are and I am certain that this will absolutely force you to make decisions you don't want to make. My thoughts and prayers go out for you...

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

Post Edited (TC-LasVegas) : 2/28/2011 4:48:28 PM (GMT-7)


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4080
   Posted 2/28/2011 5:43 PM (GMT -6)   
David, so sorry for the news.  You just can't seem to catch a break.  My thoughts and prayers are with you as you struggle with some difficult decisions over the coming months.
 
Tudpock (Jim)
Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 12/8/10. PSA: 6 mo 1.4, 1 yr. 1.0, 2 yr. .8. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1305643

MrsGFM
Regular Member


Date Joined Feb 2010
Total Posts : 115
   Posted 2/28/2011 5:44 PM (GMT -6)   
Hoping the very best for you David. Take care.
Mr GFM's statistics:
Age 50 at diagnosis
PSA History: 10-05 1.3, 01-07 2.09
8-07 - PSA at Biopsy: 2.26
2 of 12 positive
Gleason Score 3+3 6
11-07 - Robotic surgery hospitalized overnight.
Path Report:
Prostatic adenocardinoma, Gleasons 3+3+6, moderately differentiated
Percent of Prostate involved by tumor 5%
Staging pT2c pNx pMx
Margins free of tumor - no further invasion or extension
Catheter out in about 9 days. No incontinence.
Back to work in 2 weeks
ED - resolved. No meds needed at this time.
Post Op PSA: 03-08 0.01, 10-08 0.02, 7-09 0.04, 1-10 0.04, 7-10 0.04

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 2/28/2011 5:52 PM (GMT -6)   
Thanks, everyone. Based on past medical matters, I definitely seem to have quirky body. The thing that angers me, is that my PSA now is 10x what it was before I had the SRT, so from a practical sense, all the horror and side effects and pain and catheters and this urostomy surgery was all done in vain, as I am worse shape then when I started. Trying not to be bitter on that point, but can't get it out of my head.

I still will be seeing my GP on Thursday, and for the first time will have a "T" reading and a Vitamin D reading. We will be going over over bloodwork that was done recently, and I will see what his take is on this latest PC setback.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3624
   Posted 2/28/2011 5:55 PM (GMT -6)   
I can only offer you this Dave...I've been on ADT for 3 months and it's not THAT bad..

Pomegranate Juice, Green Tea and Eligard and you are good to go!! Hang in there Brother...

6071
Regular Member


Date Joined Jul 2008
Total Posts : 112
   Posted 2/28/2011 5:57 PM (GMT -6)   
David i am so sorry to hear the news of your psa test Hoping the very best for you
Age 61 at DX
Biopsy 7/2008 Positive 1 of 12 cores positive 3+4 5% To 10%
open RP 15/10/2008 Stage pt2c Post op Gleason's Score 3+4=7
apical margin is focally positive
4 week PSA < 0.1 26/1/2009 < 0.1 20/4/2009 < 0.1
11/6/2009 ultra sensitive psa 0.07 20/7/2009 < 0.1
26/8/09 Starting photon 3D CRT 13/10/09 Radiation Finished
25/11/09 psa < 0.05 26/04/10 psa < 0.05 26/10/10 psa < 0.05

lennybob
Regular Member


Date Joined Dec 2010
Total Posts : 99
   Posted 2/28/2011 5:58 PM (GMT -6)   

David,

I am so sorry to hear this. I will keep you in my prayers.

Lynn


Age 53...51 when diagnosed.
February/09 PSA 11...GP discoverd during yearly physical...referred to Urologist
Biopsy found cancer, Gleason score of 6.
July 2009...Nerve-Sparing open radical prostatectomy.
Doing very well...only issue is ED and that is getting better.

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/28/2011 6:01 PM (GMT -6)   
Hang in there amigo and don't get that worried, that velocity is not that huge (currently) in scheme of things in the PCa world. See what your tests may reveal and hear what those doctors opinions are and try to confirm anything told to you, is always worth your time. You most likely are dealing the most common form PCa and not a weird variant type so please don't dwell on that kind of thing.

You should have tests done like Dr. Strum says in his book: pyrilinks D, pap, the chemistry panel on kidney, liver and bone (which they are doing). Pap is old school but not necessarily stupid to monitor, in case someone thinks it to passe. You got scans coming and other information, so you have to wait to see what that reveals.

You can wait on HT as at this juncture docs don't all agree on the level of psa at which to start or resume a HT, there are generalizations all over the place. My radiologist doc, mentioned that in Canada some docs advise waiting as high as 15-20.0 psa level before jumping into a HT therapy or another type of HT therapy, as crazy as that sounds. You want to treat the disease and not just a psa number, the wisdom of the specialist onco-docs are good at this...so like as Dr. Barken says 'maximum assessment- minimum intervention and maximum quality of life. Sonny's onco-doc seemed to be embracing what Dr. Barken mentions often in that mantra above.  This disease is highly treatable in most cases is the good news, or I wouldn't be here now. Best to you.

Post Edited (zufus) : 2/28/2011 5:07:43 PM (GMT-7)


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2215
   Posted 2/28/2011 6:11 PM (GMT -6)   
Thanks for the update David and glad that you have the Dr. that you have. I know your not suprised by the numbers, but like me, you might have been hoping for a better result. You have been thru a lot more than I have but we are likely to end up in the same boat. My next PSA will be in May but at .27 8 months post SRT not sure what to expect at 14 months post SRT. Hope you are able to get some rest tonight and tomorrow is another day.
Michael

Sancarlos
Regular Member


Date Joined Feb 2010
Total Posts : 242
   Posted 2/28/2011 6:28 PM (GMT -6)   
David,

Sorry to hear about this latest setback. I believe you were kind of expecting bad news so at least the shock was not great. But you still have several options, including following the suggestions of Zufus and have more tests done to try to determine exactly what it is you are dealing with.

And HT, if it comes to that, may not be as bad as you fear.

Sancarlos

Post Edited (Sancarlos) : 2/28/2011 6:05:58 PM (GMT-7)


DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 714
   Posted 2/28/2011 6:31 PM (GMT -6)   
David,

Sorry to hear your news. It reminds me of getting the "news" the first time, and having to look at all the options, none of which is any fun. But you're going through that process of getting the "news" several times now, counting your other diagnoses. Whatever you decide, I hope you keep us all in the loop. We're all learning from you.

DJ

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2840
   Posted 2/28/2011 6:32 PM (GMT -6)   
David:
Sorry to hear about the change in numbers - very glad the doctor you have is a non-rush type.
Wishing you all the best in this stage of your journey.
Hugs,
BRONSON
Age: 55 - gay with spouse of 14 years, Steve
location: Peterborough, Ontario, Canada
PSA: 10/06/09 - 3.86
Biopsy: 10/16/09- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy: 11/18/09
Pathology: pT3a -Gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
PSA: 04/08/10 -0.05 -Zero Club
PSA: 09/23/10 -0.05 -Zero Club
PSA: 03/24/11 - TBA

Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 372
   Posted 2/28/2011 6:32 PM (GMT -6)   
David........I, like others here, had my fingers crossed that you would eno****er better news. I'm sorry that you didn't.
Let's hope that you continue to feel better as you formulate your next game plan with your MD-
 
Best......Arnie

Jerry L.
Veteran Member


Date Joined Feb 2010
Total Posts : 3049
   Posted 2/28/2011 6:39 PM (GMT -6)   

David,

Sorry about the news...

Hang in there...

Jerry L.

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4186
   Posted 2/28/2011 6:56 PM (GMT -6)   
David,
So sorry for the unfortunate circumstances you are in. Hope some of your luck changes in the future.
JT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

Julietinthewoods
Regular Member


Date Joined Sep 2010
Total Posts : 309
   Posted 2/28/2011 6:59 PM (GMT -6)   
David...I'm sorry. Hoping tomorrow will bring you some perspective and hope and new answers.

Juliet

Trepidation
Regular Member


Date Joined Feb 2011
Total Posts : 173
   Posted 2/28/2011 7:05 PM (GMT -6)   
"David:
Sorry to hear about the change in numbers - very glad the doctor you have is a non-rush type.
Wishing you all the best in this stage of your journey.
Hugs,
BRONSON "
 
I may be new but I wonder if a new Dr.'s opinion may be in order, or maybe a few more specialist types. Just asking as his history has been a bearcat. NOTHING wrong about the past Dr. but more opinions may help David.
I am going to ask questions to more than a few after I educate myself more.
Still scared but am built that way of asking decent questions before action.
60 years old and seeing my PSA go up.
You have a prayer coming David.


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6886
   Posted 2/28/2011 7:19 PM (GMT -6)   
David,
 
I was hoping I was going to get a chance to razz you about being so negative about the tests (that is reserved for me & Worried Jeff).
 
Let's hope it is a fluke. Hang in there.

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 2/28/2011 7:20 PM (GMT -6)   
David,
Oh man! What can I say? You sure deserve a break.
You make all my problems look insignificant.
I wish you well.
Jeff
Age: 58, Mar 35 yrs, 56 dx, PSA: 4/09 17.8 6/09 23.2
Biopsy: 6/09 7 of 12 Pos, 20-70%, Gleason 4+3 Bone, CT Neg
DaVinci RP: 7/09, U of Roch Med Ctr
Path Rpt: Gleas 3+4, pT3aNOMx, 56g, Tumor 2.5x1.8 cm both lobes and apex
EPE present, PNI extensive, Sem Ves, Vas def clear, Lymph 0/13
Incont: 200ml/day ED: Trimix
Post Surg PSA: 10/09 .04, 4/10 .04, 7/10 <0.01, 12/10 <0.01
AdVance Sling 1/10/11

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7197
   Posted 2/28/2011 7:37 PM (GMT -6)   
David:
 
I am totally floored by this news. Frankly I was not even convinced a pattern had been established in your situation (I think you went from 0.04 to 0.06 or maybe 0.05 to 0.06 post SRT).
 
David, I have a question: I thought I read that it is not unusual for the PSA to rise after SRT. Hopefully it then hits a nadir and starts to decrease, and they use that nadir to determine a BCR level. Is it possible that this is just the routine type increase?
 
This is most depressing news. You do need a top-notch medical oncologist who specializes in PC. As you know, I've been investigating this myself. It seems they are few and far between. I am leaning towards Dr. Mark Scholz in Ca. I guess I would follow through if my (probable) SRT fails. It may be worth looking into. I looked on his web-site and they seem to accept lots of insurances, including Medicare (I don't think you are at that age, but his site lists the assorted insurances).
 
One suggestion: Dr. Gerry Chodek does do consulting by email and/or telephone. He charges $350. The consultations would be ongoing. It is something to think about. I have his email address if you want it. I have not yet taken him up on that.
 
I know you are very partial to your own doctors, but please just consider these as possibilities. At this point, I'm sure your head is spinning.
 
Mel

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 2/28/2011 7:43 PM (GMT -6)   
Ah bugger it David. I was looking forward to giving you the rasberry and have been checking in most of the morning here waiting for your update. What can I say? Not the news you or your fellow members wanted to hear and most especially after all you've been through in the battle. Makes you want to shout at the world. But life goes on, and so does the battle so you move on to the next stage ------ I know it is not in your nature to just lie back. Then again maybe somebody stuck that decimal point in the wrong place. You seem to have a pretty good doc on board and your faith in your previous oncologist seems well founded. Best of luck with the scans.
Take care,
Bill
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