Frustrating...PSA results!!!!

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Concerned4You
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Date Joined Dec 2010
Total Posts : 94
   Posted 3/25/2011 10:56 AM (GMT -6)   
So I need to vent... AND get some advice.
 
It's been a while so let me catch you up to speed....
 
Gleason 4 + 5= 9 -- John Hopkins second opinion ---- one or more of the "4s" actually a "5" -- not sure if that changed it to 5 + 4=9  BUT anyhow...
 
Surgery was mid Feb. - Dad lost alot of blood ---and had to get two transfusions.
 
The catheter remained in for 6 weeks (due to a bladder leak). They removed the catheter today.
 
Initial PSA before surgery was 9.7 (aprox)
 
PSA test done this week--- post surgery and reveals ----- 5.1 (6 weeks post surgery)....
 
Doctor indicates the following:
 
Although 12 lymph nodes were biopsed and were negative ---- he "suspects" and is "concerned" cancer may be in some of the lymph nodes they weren't able to check or get too. His concern comes from the fact that his PSA is still over 5.
 
He spoke w/another doctor and they are going to re-test the PSA in 2 weeks --- at that time if the PSA is still high and/or has elevated they will begin Hormone Therapy (and it sounds like they would bypass radiation all together).
 
 
Thoughts... Encouragement.... Is this normal? 
 
My thoughts are that "It's only been 6 weeks -- should his PSA have dramatically dropped???????"
 
The doctor wanted his PSA to be 1.2 or lower.
 
So is a 5.1 PSA too high for 6 weeks post surgery? Any others experience this?
 
 
 
 
 

Fairwind
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   Posted 3/25/2011 11:26 AM (GMT -6)   
First, know that Gleason 9 and 10 are a whole different ball-game...The rules used by the Gleason 6 and 7 guys simply don't apply to us..The PSA 5.0 post surgery is a big disappointment..

If your Dad's docs have ruled out radiation, they must feel his cancer has metastasized and become systemic..Talk with them about that...What are they basing that decision on? Perhaps they just botched the surgery (more concerned with the hemorrhage) and left a lot of prostate tissue behind..Hard to get them to admit that....Radiation still might be an option..

If they feel a cure is not possible at this point, then the HT is what will be used in an attempt to control his disease as long as possible..Seek the services of a Medical Oncologist skilled in treating advanced PC...Best of luck to both you and your Dad...

Don't give up until you get some straight answers and maybe a second opinion...
Age 68.
PSA age 55: 3.5, DRE normal.
age 58: 4.5
61: 5.2
64: 7.5, DRE "Abnormal"
65: 8.5, " normal", biopsy, 12 core, negative...
66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
67 4.5 DRE "normal"
68 7.0 3rd biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT. 2-15-'11 PSA 0.0

Post Edited (Fairwind) : 3/25/2011 11:31:53 AM (GMT-6)


Concerned4You
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Date Joined Dec 2010
Total Posts : 94
   Posted 3/25/2011 11:31 AM (GMT -6)   
Thanks Fairwind,

That's the frustrating part. They can't confirm that it has spread. They froze 12 lymph nodes in surgery... all were negative. Now they are saying 6 weeks later which a 5.1 PSA it must be in the lymph nodes somewhere they didn't check?

We are so confused--- he's thrilled to have the catheter out (6 weeks seemed FOREVER). However, we are VERY concerned about the high PSA.

They are going to re-test in 2 weeks. Is 5.1 really that high given it's only been 6 weeks? It was stage T3b after surgery.

I'm guessing if it's in the lymph nodes its a 4 now?

Fairwind
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Date Joined Jul 2010
Total Posts : 3740
   Posted 3/25/2011 11:38 AM (GMT -6)   
I edited my original post a little, you might re-read it.. At 6 weeks my PSA was 0.9 Same at 8 weeks out..

The PSA 5.1 means they botched the surgery or the cancer has spread significantly..Just my layman's opinion...
Age 68.
PSA age 55: 3.5, DRE normal.
age 58: 4.5
61: 5.2
64: 7.5, DRE "Abnormal"
65: 8.5, " normal", biopsy, 12 core, negative...
66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
67 4.5 DRE "normal"
68 7.0 3rd biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT. 2-15-'11 PSA 0.0

Concerned4You
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Date Joined Dec 2010
Total Posts : 94
   Posted 3/25/2011 11:41 AM (GMT -6)   
Thanks. You may be right - they may have been concerned w/all the bleeding. The doctor specifically told us he took all he could take. He went as far as he could to try and make sure he got as much of the margin as possible.

I guess they believe it's in the lymph nodes then ---- we will wait for the 8 weeks and see what comes about.

DaSlink
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Date Joined Feb 2011
Total Posts : 713
   Posted 3/25/2011 11:54 AM (GMT -6)   
I'm at a loss for words.Darn near made me cry.Teared up any way. I'm routing hard for ya!
Every minute you fish or ride,adds an hour to your life!

Age 52 Dx age 53 daVinci surgery
prostate volume 32 grams
Biopsy 12 cores with 7 positive
Gleason score of 7
1st PSA 38.7 10/05/2010
2nd PSA 49.9 11/23/2010
CT neg.
BS Negative
RRP on 01/25/2011
PT3a -40% involved
margin involved-Left anterior
lymph nodes -clear
1st post op PSA-0.26-03/16/11

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 3/25/2011 12:58 PM (GMT -6)   
Concerned, that is a tough read.

For sure, the purpose of the surgery has failed, and there is still cancer behind. I would not use terms like "blotched surgery" as noted above. That's hardly fair to the surgeon in question here. Bleeding is always a risk, and though not as common as it use to be, it can still happen. The catheter part I understand, my original post surgery catheter went for 63 days, and that was before I had all the other stricture and additional catheters.

Some lymph nodes are so deep down, that there is more risk extracting them, so they check the ones they can get, and if they are "clean", they usually stop. It's also possible the remaining cancer is elsewhere, but at 5.x and above, its significant at this point.

The advice of a top medical oncologisit at this point is critical in my opinion.

I wish him, and you, only the best.

David in SC
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 2/11 1.24
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 9/10,

BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 3/25/2011 1:00 PM (GMT -6)   
I cant say I would be quick to use the word "boched". The doctors themselves would tell you their 1st duty is to remove the cancer, save lives. If the cancer has spread, that doesn't mean they botched surgery, it could simply mean the cancer has spread.

My surgery failed because my psa rose afterwards. So "failed" would be a correct term for what happened. It's not as if they can see the cancer, cell by cell. Heck, if we could do that....!!!!!

Regarding your question about 5.1 psa, since he had the prostate removed, it should be undetectable. There is no protate left to give anything other than a small psa #, if any. So that's why 5.1 is telling... it means that prostate tissue remains.

I am not sure of your dad's age.. but drs likely think that with the high psa, and knowing the operation, pathology, etc, that the 5.1 is a sign of pca having spread outsite the prostate bed, where radiation might have been an option.

The Hormone therapy is not a curing therapy, it is a delaying one, and one that may very well help your dad for years, regardless of where the pca has spread.

I do not presume to be giving you medical advice. And I certainly dont suggest to know any of this better than Fairwind. Just tossing out my perspective.

If nothing else, you ABSOLUTELY need to be asking questions to your dad's medical team.. 2nd opinions and whatever else. I am hoping for only the best for you and your dad.

Bob on Cape

proscapt
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Date Joined Aug 2010
Total Posts : 644
   Posted 3/25/2011 1:00 PM (GMT -6)   
So sorry to hear about this... not good news.

Someone on this site once said there is a detailed report that is filed by the surgical team about how the surgery went that is part of your medical record, but not generally given to the patient. I forget what it's called. Ask for it. There should not be any ambiguity as to exactly what happened and whether any of the prostate was left behind due to having to deal with the bleeding. No need to guess about this.

If the hospital messed up and left some PC behind they might owe your dad another surgery to get the rest of it. Don't assume that the bleeding was due to something unique about your Dad's physiology, although it could be. It could also have been due to an error by the surgical team. You just don't know and shouldn't assume anything either way at this point. Where was the surgery done? How much experience did the surgeon have?

If you can't get the report or it is ambiguous or you are suspicious if it's accurate, maybe some other imaging can be done to see if there was any prostate tissue left behind? Ultrasound or endo-rectal MRI are possibilities. I really don't know.

Right now all you know is that this is no longer a "garden variety" case, and if the hospital made a mistake there could be a lot of defensiveness. I would for sure get a second opinion from a top medical oncologist who is not affiliated with the hospital where the surgery was done.

Best of luck to you and your dad.

142
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Date Joined Jan 2010
Total Posts : 6946
   Posted 3/25/2011 4:13 PM (GMT -6)   
Rough news.
 
Even at 6 weeks the PSA should have been much lower (mine was 7.4 before, and <0.1 at 7 weeks - the doc was concerned that it might still be 1.0 - 2.0 just from the half-life of the PSA in the bloodstream, so was overly cautious in setting me up for a non-zero number). What should it be, can't say exactly, but someone has posted a chart here.
 
A Gleason 9 is a factor that makes them look for systemic spread to start with. I hope that is not what has happened, but there is a period when it is out, but they wouldn't be able to see where, so the HT suggestion makes sense.
 
I would avoid the "botched surgery" thoughts - unless there is reason to believe that, and it still doesn't help anyone heal. Even the simple surgeries carry risks we don't want to talk about.
 
RT is only valid if they have a good idea that it is still in the prostate bed.
 
I am a G 9 as well, and was warned of this scenario before surgery. I really feel for you, and am sending my best wishes.
 
 
DaVinci 10/2009
My adjuvant IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

proscapt
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Date Joined Aug 2010
Total Posts : 644
   Posted 3/25/2011 6:27 PM (GMT -6)   
To 142 - The only reason I brought up the possibility of the "botched surgery" as you put it, is not to be paranoid or conspiratorial, but to be sure that the best next step is being taken. For example, if most of the PSA is coming from remaining prostate tissue, radiation would definitely be in order. If the entire prostate is gone and that much PSA is still being generated, then systemic disease is likely and radiation would be pointless. I would still recommended getting an independent opinion if at all possible.

Fairwind
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Date Joined Jul 2010
Total Posts : 3740
   Posted 3/25/2011 9:34 PM (GMT -6)   
Okay, the use of the word "botched' might be a little strong, major surgery like this has risks, hemorrhage, transfusions and negative outcomes are all part of the risk package...As proscapt pointed out, there are surgical notes that detail the operation and the problems endured, but I believe they are considered the surgeons private record..

Anyway, that's history now..The next question is is it possible that RT would benefit this man?? Was significant prostate tissue left behind? You should be able to get answers to those questions..

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 3/25/2011 9:42 PM (GMT -6)   
The surgical notes are part of the patient's rights under HIPPA laws and disclosure laws. You may have to ask your surgeon for them, and sometimes they almost looked like they are in some medical code. I asked for mine, and learned a lot about the complications my surgeon underwent when I had my open surgery.

If there's any doubt, ask for a copy, you can't be refused.

david in sc
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 2/11 1.24
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 9/10,

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6946
   Posted 3/25/2011 10:01 PM (GMT -6)   
David is correct on the Surgical Report. I was not aware of it, but my insurance company required me to get a copy for claim information.
 
It is (at least in the US)  your right to have a copy.
 
 

logoslidat
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Date Joined Sep 2009
Total Posts : 5815
   Posted 3/26/2011 2:52 AM (GMT -6)   
Ok we have to move forward on this. proscapt point, at this time is his best hope for a salvage. I t is very possible, that with the hemmoraging, the focus went from getting it all out to stopping the bleeding this is most probably what happened with the other nodes. You would help us a lot by letting us know the experience level of the surgeon, the hospital or medical center it happened,etc. Purg ,we are aware of your respect and affinity for your medical team, so let me slide on this one, if possible. Walsh makes exactly this point on getting the most experienced surgeon you can. He talks about the what ifs, and how the avg surgeon might handle it vs the highly experienced surgeon might. I got the script or whatever you call it with my pkg, did not have to ask, so its there. Its critical you get if you have to get a court order. Get it, make contact with the big boys, John HopKins, sloan kettering, etc, let them read it and they will do all they can, which imo, is alot. I doubt they will go back in, may not be necessary. These guys/gals want challanging cases, like this. Don't email, call, kick, cry scream thru the bueracracy, till you get to person who will help you. Darn I used the quick reply, look for second post, post haste. out of room here.
Diagnosed 8/14/09 psa 8.1 66,now 67
2cores 70%, rest 6-7 < 5%
gleason 3+ 3, up to 3+4 @ the dub
RPP U of Wash, Bruce Dalkin,
pathology 4+3, tertiary5, 2 foci
extensive pni, prostate confined,27 nodes removed -, svi - margins -
99%continent@ cath removal. 1% incont@gaspass,sneeze,cough 18 mos, squirt @ running. psa std test reported on paper as 0.0 as of 12/14/10 ed improving

logoslidat
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Date Joined Sep 2009
Total Posts : 5815
   Posted 3/26/2011 3:35 AM (GMT -6)   
till you get to person who will help you. Proscapts point may in fact be right. A lot of prostate and cancer may have been left behind and radiation could get it. with the new development today, probably associated with hormone therapy. Believe me this ain't over by a long shot. How old is your father and general health, sans cancer. If he's over 75 or so they may do just hormone therapy. Read Patrick Walshes book on PCA, study it. to back up a bit , I embellished the part about the bureuracracy, Be courteous but persistent. It could be a lab error, doubt it though, with a 9 possible 10, a lot of docs wouldn't even do surgery. Do not lose hope!!! I am praying as deeply as I can, in this situation, for you, Aloha, Logo
Diagnosed 8/14/09 psa 8.1 66,now 67
2cores 70%, rest 6-7 < 5%
gleason 3+ 3, up to 3+4 @ the dub
RPP U of Wash, Bruce Dalkin,
pathology 4+3, tertiary5, 2 foci
extensive pni, prostate confined,27 nodes removed -, svi - margins -
99%continent@ cath removal. 1% incont@gaspass,sneeze,cough 18 mos, squirt @ running. psa std test reported on paper as 0.0 as of 12/14/10 ed improving

logoslidat
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Date Joined Sep 2009
Total Posts : 5815
   Posted 3/26/2011 3:57 AM (GMT -6)   
Purg, my sincere apologies for bringing you into my post that a way, it had implications that were not at all warranted. Don't know what I was thinking. Guess I wasn't, Again Mea culpa!
Diagnosed 8/14/09 psa 8.1 66,now 67
2cores 70%, rest 6-7 < 5%
gleason 3+ 3, up to 3+4 @ the dub
RPP U of Wash, Bruce Dalkin,
pathology 4+3, tertiary5, 2 foci
extensive pni, prostate confined,27 nodes removed -, svi - margins -
99%continent@ cath removal. 1% incont@gaspass,sneeze,cough 18 mos, squirt @ running. psa std test reported on paper as 0.0 as of 12/14/10 ed improving

tarhoosier
Regular Member


Date Joined Mar 2010
Total Posts : 486
   Posted 3/26/2011 9:16 AM (GMT -6)   
For men with G 8-10, the chance of primary treatment being curative is limited. Historically these men, myself included, should look at their primary treatment as the first in a series of disease management manoeuvers. Such as 4you's dad. The surgeon who agreed to undertake this operation was working outside of his comfort zone and had to know that the chance of full success was seriously limited. I do not know if this was communicated to the patient. Nonetheless, the cancer has metastasized, as G 9 does, and is certainly in bone marrow and lymph and blood system. Years of successful treatment and productive life lie ahead for this man and most others like us.

Bx 11+/12, G9, psa ~16, (BMI 23, age 58) post surgery pT2c, N+, psa 2.7. Five years of IADT, <0.1

John T
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Date Joined Nov 2008
Total Posts : 4223
   Posted 3/26/2011 9:54 AM (GMT -6)   
Unless your doctors can absolutely identify a local reoccurrance through an MRI or color doppler scan and confirmed with a biopsy, radiation will not be curative. A high psa after surgery, negative margins and a high psa is highly indicative of a matastized disease. Radiation is rarely effective as a salvage option once the psa reaches 1 after surgical removal. There are nonograms available that your doctor can use to determine the effectivenesss of salvage radiation. You best bet is now to consult with a medical oncologist specializing in prostate cancer. A list of such oncologists and their location is published in the back of "Invasion of the Prostate Snachers" by Dr Mark Scholz.
Good luck to your and your husband.
JohnT
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.

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 5815
   Posted 3/26/2011 11:42 AM (GMT -6)   
John T , Your post is succinct and factual, What was driving my post, was a last ditch effort to give tangible hope for a cure. As in him getting way behind the power curve and possibly even sewing him up, prior to finishing. That is definetly a high psa for post surgery, but initial psa is not that high to indicate, necessarily, matastazation/systemic spread. plus the fact of no cancer in 12 lymph nodes I can only speak from my knowledge base. I know,I don't know, what I don't know. I am also aware of low psa/ aggressive PCA. Till and if all the facts are in, we won't know what happened in that OR. You indicate the possibility, however low, in the first sentence of your post that it still could be in the local bed and hence possibly curable. Bottom line, and this is for you, 4you, there is mucho hope here for many more years for your father. Thats the lifeline to grab and hang on to. Good Luck and Aloha, Jack Kerr

.
Diagnosed 8/14/09 psa 8.1 66,now 67
2cores 70%, rest 6-7 < 5%
gleason 3+ 3, up to 3+4 @ the dub
RPP U of Wash, Bruce Dalkin,
pathology 4+3, tertiary5, 2 foci
extensive pni, prostate confined,27 nodes removed -, svi - margins -
99%continent@ cath removal. 1% incont@gaspass,sneeze,cough 18 mos, squirt @ running. psa std test reported on paper as 0.0 as of 12/14/10 ed improving

Concerned4You
Regular Member


Date Joined Dec 2010
Total Posts : 94
   Posted 3/28/2011 5:53 AM (GMT -6)   
Thanks everyone.
 
I have read Dr. Walsh's book. It does seem like HT is most likely the best option at this point. His doctor suggested a hormone shot and them possibly radiation.
I think it's important to note he is not working with one doctor but rather a team of doctor's. They are the best in our area and have been around for a long time. His surgeon is younger but is very sincere and we feel 100% comfortable with him.
 
I don't think it would be right for us to blame his surgeon at this point. The fact of the matter is he is a Gleason 9 and hadn't had this prostate checked in "years" (not just one). I have to admit I was astonished at the PSA level post surgery. I would have never dreamed it would come back so high.
 
The most disappointing thing about all of this is PCa appears, on paper to be the most managable and treatable of all cancers. However, for us it does not feel like we are going to get the storybook ending we hoped for. Call me naive but I didn't realize PCa was such a booger to deal with!
 
I hope the HT (and possible radiation) will at least sustain the cancer for another 15 years!
 
The bone scan and CT scan prior to surgery were negative. I'm sure the bleeding complicated matters but the doctor actually stopped surgery and brought in a pathologist to look at 12 of the lymph nodes so I don't think he was just hurrying to finish the surgery.
 
After reading more of Dr. Walsh's book it seems his disease might be "micrometastic" and was probably elsewhere in the body prior to the surgery.
 
Praying we get better news from the 8 week PSA test and praying that Hormone Therapy works!
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