Clean for 27 Years ~ Then a relapse...

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Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 7/8/2009 5:16 PM (GMT -6)   
One of my best friends has stood by me since my diagnosis and has provided support I will always remember.  His father had prostate cancer in 1981.  His surgery removed the prostate and his testes (orchiectomy). He was 55 at the time.  Last month he was diagnosed with bladder cancer.  And last week after tests were completed, his diagnosis was changed to metastatic adenocarcinoma of the prostate, Gleason 10.  The tumor was negative for PSA, but positive for PAP...He will start seeing my oncologist soon.  An interesting note, they stopped doing PSA tests when he turned 75.  He is having a new PSA test today, and will have results next week.  I am not certain there will be a PSA since the tumor did not have any. 
 
His father lived to his 90's so he will likely treat it to some degree.  He is 82 now.  I find this story facinating.  27 years after surgery, he relapsed.  I don't know the details of his story in 1981.  There was no PSA tests.  He had a positive DRE test that led to biopsy.  I don't know the original Gleason, and back then is was not uncommon to do the orchiectomy with the RP.  I am trying to find out what the stage and Gleason were in 1981.
 
The only thing I can say is, don't skip those PSA's, and ask if a PAP can be run with it.
 
Sheesh...The patient is doing ok, he is an open faucet in regards to incontinence, and the bladder will be treated with radiation.  Further tests are being done to determine if the mets have gone to other organs.
 
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!


mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 377
   Posted 7/8/2009 6:06 PM (GMT -6)   
What's a PAP?
my age=52 when all this happened,
DRE=negative
PSA went from 1.9 to 2.85 in one year, urologist ordered biopsy,
First biopsy on 03/08, "suspicious for cancer but not diagnostic"
Second biopsy on 08/14/08, 2/12 cores positive on R side, 1 core=5% Ca, other core = 25% Ca, Gleason Score= 6 both cores,
Clinical Stage T1C
Bilateral nerve sparing Robotic Surgery on 09/11/08, pathological stage T2A at surgery
No signs of spread, organ contained,
3 0's in a row now, 10 months out
Incontinence gone in early December '08,
ED remains,  still taking daily viagra for penile rehab, uro said try oral meds and then trimix for sex only now, Peyronie's Disease a problem now


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 7/8/2009 6:48 PM (GMT -6)   
Wow Tony, that is astonishing. I do remember one of our posters here (or was it YANANOW?) having a relapse (or at least becoming PSA detectable) after 15 years of undetectable readings following surgery. But 27 years! I guess it is a reminder to be well pleased if our PSA is undetectable following surgery but always remain vigilant. It is an eye-opener that the tumour produced no PSA but PAP was detectable. I shall ask about including PAP with the next PSA test although acording to this article, other things may produce a reading which may then cause unnecessary alarm.
adam.about.com/encyclopedia/Prostatic-acid-phosphatase-PAP.htm
I hope your friend's treatment works out well for him.
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


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 7/8/2009 7:22 PM (GMT -6)   
PAP
PAP stands for prostatic acid phosphatase. Just as RTPCR is a very new and experimental test for prostate cancer outside of the prostate, PAP is a much older test which was in very common use before PSA testing became possible. Today, PAP tests are relatively rare. However, there are still reasons why doctors may think a PAP test is valuable for a specific patient. If your doctor tells you you need a PAP test, you should ask ask him or her to explain what the PAP test may be able to tell that can't be learnt from PSA testing or other forms of available test. The commonest reason for use of a PAP test is that it may help to identify a patient with metastatic prostate cancer.

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!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 7/8/2009 8:15 PM (GMT -6)   
That's was some story, Tony. Feeds into my thinking that there really is never a 100% clear from prostate cancer. But to go 27 years is pretty amazing to me, to have that many more free years so to speak. Especially since I am less than 8 months out of surgery with clear pathology and may be looking at a reaccurance already. Already dreading next Monday's visit to the Radiation Oncologist. Since they are in the biz of radiation, sure they will want to push to start something, but I am still insisting that I have to be convinced that there is reaccurance.

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
 
 


montee
Regular Member


Date Joined Mar 2007
Total Posts : 315
   Posted 7/8/2009 8:45 PM (GMT -6)   
Does that mean that there were alive cancer cells hanging around, but with no or low Tetesterone levels due to his Orchidectomy, they were kept at bay for 27 years.

diagnosed sept 2006 @ 54 years old, live in Georgia, gleason 3+4=7, (r) lobe only

psa 4.7 (psa rose 1 point per year for 3 years, urologist said still under 4 and no concern. If I can find out about PSA velocity, why didn't he know!)

Told not to have surgery at Dana Farber as cancer had already penetrated prostate, in seminal vesicles, would have positive margins. Would only treat with radiation and HT

RP Emory Atlanta December 2006. Path-negative margin, negative lymph nodes, negative SV, both Lobes involved, 40% gland involved
multifocal perineural invasion, Gleason 3+4=7

Fully continent 2 weeks post catheter removal

1st psa April 2007-<0.04, 6 mos-<0.04, 9 mos <0.04, 1yr <0.04, 21 mos <0.04, 2 yr 0.04 (rising?) 27 mos-0.05


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 7/8/2009 11:07 PM (GMT -6)   
hi montee,
Pretty much. And it only takes one cell. Cancer cells are mutations that can live for quite some time. I spoke to them this evening, they thought it was gone for good. It is extremely rare for a relapse this long after treatment.

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 7/9/2009 7:45 AM (GMT -6)   
Tony,

Just a side thought...would it have been possible that his own immune system had kept the cancer at bay all these years. And now more recently due to age, his immune system wasn't strong enough to hold the cancer back. If that were the case then it would be quite possible for any number of different type of cancers to flare up. Just a thought.
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 7/9/2009 7:49 AM (GMT -6)   
Tony, you made me crack up, you said "Cancer cells are mutations that can live for quite some time. I spoke to them this evening".

You speak to your cancer cells? lol. Do they answer back, or are they good listeners, perhaps this is a craft or treatment method you should teach us all.

Just kidding you, brother, but it struck me as funny how I read that.

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
 
 


JoeyG
Regular Member


Date Joined Jul 2009
Total Posts : 162
   Posted 7/9/2009 8:32 AM (GMT -6)   
Another WOW!! Post....
 
Yes, it looks like the combination of no testosterone production AND a strong immune system kept any existing nasty PCa cells from replicating for a looong time. In fact, many believe that the growth of cancer is an inverse relation with the strength of our immune systems. BUT 27 YEARS????  And the fact that the PCa exerted no psa may indicate that the cells mutated in such a way that they are "mutated-mutated pca cells (something like bacteria that become resistant to all forms of antiseptic drugs...their mutations are astounding!)
 
David,
 
On another note; don't let any doctor rush you with your possible next course until you have all your facts. Your psa may be rising but it likely won't make any difference if you have salvage in August or salvage several months following. In my opinion, its best to be clear and be certain.
 
Tony,
 
I think we all "talk"to our prostate cancer cells, with words that cannot be printed on this forum cool
Age -57; Diagnosed 10/05 PSA 13.4 GS 9 Organ confined
Cryoablation 4/06 Allegheny Hosp-Dr Ralph Miller (Cohen/Miller)
Post Cryo Nadir 8/06 0.2
Rising steadily to 0.7 4/09 :-(
Looking to take next steps soon
Hoping to qualify for salvage cryo or radiation


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 7/9/2009 8:52 AM (GMT -6)   
Les,
I can't answer that question, but like Joey said, there was a combination of things going on more than likely.

David, i meant to say that I talked to the patient and his wife. LOL...But I can see the typo.


Joey, mutated mutations...lol...but you are correct. Cancer is a mutation, and when it goes hormone refractory that is yet another change in the dicease.

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!


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 7/9/2009 10:30 AM (GMT -6)   
Quite a story. I guess you are never totally free of this disease.

Everyone diagonsosed should get a PAP. According to Stephen Strum it is the best test for showing the agressiveness of PC. My low PAP scores was a major indication that my tumor with a PSA of 40 was not agressive and made me opt for not taking Lupron which was the perscribed protocol for a high psa.
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DX BPH and continue to get biopsies yearly. Positive Biopsy in 10-08, 2 cores of 25, G6 less than 5%. Scheduled Surgery as recommended.

2nd Opinion from Dr Sholtz, an Oncologist said DX wrong, path shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G 4+3 approx 2.5cm diameter.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and burining urination. Daily activities resumed day after implants.

Scheduled for 5 weeks IMRT in July

JohnT


STW
Regular Member


Date Joined Jun 2009
Total Posts : 292
   Posted 7/9/2009 3:11 PM (GMT -6)   
I'm not surprised by this at all.
My father relapsed 23 years after his initial prostate surgery.
He was told that a small piece of his prostate was not removed and it had developed cancer.
If that is true than his second case may have been new and unique.
He got proton beam radiation for that and lived another 10 years.
Diagnosed at 54
PSA 8.7
Biopsy 1/7/09
4 of 6 cores positive, one at 90%
Gleason 3+4=7
Neg bone scan 1/15/09
One shot Lupron Depot 1/27/09
Tax Season
RP 4/29/09
Neg lymph nodes, postive seminal vesicle, 1 positive margin
Gleason 3+4=7 with tertiary 5
Catheter out at 2 weeks no nighttime incontinence
Pad free week 5
PSA 6/6/09 <0.1


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1132
   Posted 7/9/2009 9:08 PM (GMT -6)   
great post. The part about always have a PSA is right on target. all we read now is someone wanting to do away with the test. Of course, I bet that person writing that trash has never had cancer.
 
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


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/12/2009 5:59 AM (GMT -6)   

I will bet that the relapse actually is shorter than the 27 yrs., it took 27 years to find enough or to have an issue that became detected and/or found. Likely it was there long ago but took this long to become aggressive and Gleason 10. Having orechtomy along with surgery would naturally be helpful against PCa, even done by itself as some patients have done so. Surely for having surgery and then having your _uts literally cut off has lost favor with the public, if everyone were told today that this is standard surgery(today), probably more radiations and alternative treatments would find customers. yeah

This also shows why the words cure, and "we or I got it all" should be not be said to a patient in haste or so easily spoken out.  I noticed ,what I believe is the wiser and/or better docs do not actually come out say such words. They may say control or longevity and such verbage.

I literally cringe when I see posters or their wives go on and on about the surgeon says he got it all. Totally ridiculous, he cannot see PCa cells (unless it is tons of it) and cannot see beyond where he operated, etc. So with this limited wisdom the doc is going to say I got it all???? Maybe he bragging he got all the prostate out, even that task is difficult but kind of a no brainer (as that is why you went to him).  Maybe the I got it all means the insurance money or payment(lol), then I agree totally, yeah you got it all. Not against surgery as a realistic choice, just be totally informed and straight up about risks, rewards, side effects, healing issues and time frames etc.  (look beyond the docs sugar coated words, via using books, internet, second opinion(s), forums and such). The truth will set you free.

 

 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 7/12/2009 10:05 AM (GMT -6)   
LOL, the surgeon that says I got it all is either a liar or has the most amazing telescopic/microscopic eye and would be worth his/her weight in gold!

Smart dr. never use phrases like I got it all, or its fully contained, or I guranty it, etc.
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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