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BARR
New Member


Date Joined Aug 2009
Total Posts : 7
   Posted 8/9/2009 9:13 AM (GMT -6)   
I have done two recent PSA which read a .3.
The Doctor is prescribing an MRI, Bone Scan, and then a biopsy of the fossa.  with the possibility of radiation treatments. (My feeling is that once down this path the chance of NOT being radiated is 0% and being radiated 100% with or without the tests!
My prostatectomy was in 1997 with no additional treatment (and also a participant of the casadex study)and subsequent PSA have gone from neglible to a .3 and that seems to be the incentive for these tests.  Has anyone received a "Creeping PSA diagnosis?" and what did you do? Or what was the point at which the Doctor took 'action?'  What questions are relevant to be asked or to get information about
I recently broke up with a lady friend-so does sexual interest affect my PSA? or does my PSA affect my sexual interest?  
And I hate to say but I think that the tests are motiviated by facility costs rather than actual concerns about MY situation/and CYA concerns as well.  
Any thoughts/questions/and knowledge would be most appreciated.
BARR
 

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 8/9/2009 9:48 AM (GMT -6)   
Thanks for joining us BARR. I am not sure I have enough information to answer your question. If you had a RP in 1997 and your PSA is just now at .3 that does not seem to be that bad. Please tell us more about your path reports from surgery and well gleason score. You mentioned being in the casodex study, what exactly do you mean by that?
The more information the family here at healing well has the more we can assist. Again thanks for joining us and I will follow this thread as I to am interested in the answers. Please feel free to join in our discussions.

peace and love
dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11

PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01

Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/9/2009 9:55 AM (GMT -6)   
Welcome Barr, dale is quite right, would need some more information and a little clarification to help you better. Hope you hang around and stay with our PC brotherhood. Great place to be, great place for information and support.

David in SC
Age 57, 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
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18
 
 


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 8/9/2009 10:42 AM (GMT -6)   
Barr,
You a right to be suspicious of the facility trying to run up test costs. With a PSA of .3 it is very doubtful that any of these tests will indicate anything but increased medical bills. I would consult with a good prostate oncologist for a 2nd opinion and some other tests that may be more helpful in determining if you have a reoccurrance and if it is local or systemic. Only a specialist is equiped to do this with a high degree of probability. Your initial stats have a significant bearing so please supply them.

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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/9/2009 12:48 PM (GMT -6)   
I do grow weary of the continuous suspicions of some people against doctors, tests, medical faciloities, etc. Like some giant conspiracy theory. If someone feels that strongly against all of that, than just don't go, see if you can heal yourself. Most doctors, not all, are highly educated, up to date, caring, and are looking in your best interest. They are not working against you, that would be self defeating. That has been my experience at age 57 having gone through a hell of a lot of major medical maladies since age 28.

In BARR'a original post above, the tests mentioned would be all considered normal and typical for what very well could be reaccurance after his surgery. A post surgery psa of .3 would be considered serious by most doctors and oncologist that I personally know.

The fact that the surgery was 12 years ago, and now there is a rise to that level, is a good reason to be concerned. That was a long period of remission, if that is what it is indeed.

The thing that doctors and nurses hate most of all (and I am married to a nurse) is non-compliant patients or patients that think they are more educated than the doctors. Not suggesting that we buy everything we are told at face value, there are ways of cross checking information and suggestions, but at some point, you have to trust the experts, or you are on your on.

David in Sc


Age 57, 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
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18
 
 


Boppa
New Member


Date Joined Aug 2009
Total Posts : 1
   Posted 8/9/2009 1:12 PM (GMT -6)   
My husband had his prostate removed in 2001, no treatement required. His PSA has been reading zero until just recently he had blood work done for an insurance application. It came back showing his PSA level 0.11. I intend to get him to the urologist he's been going to as soon as possible. I'm just wondering if this level means something bad or could there possibly be a false positive?
mymore

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/9/2009 2:10 PM (GMT -6)   
Purgatory,

I agree with the underlying basis for your post. On the whole, our American medical community is the finest in the world.

As we read these posts, we are dealing with second and third hand information, so our interpretations can be skewed because the patient tells us what he thought the doctor said.

Most of the time, after he says "you have cancer", we don't really hear much more of that whole office visit.

On that basis, I think a second opinion for our own understanding is a good thing, not that the doctor is bad. Secondly, we all freely admit that surgeons fairly routinely recommend surgery, and radiologists recomeend radiology. I have been to all of them in my quest. I saw a top prostate oncologist at U of M besides the 2 surgeons, and a radiologist. Each one added another piece to my understanding.

I will certainly admit there are some regular posters on this site who are fairly suspicious of the advice they have received. Some for good reason, most for no reason, or some that haven't heard the answers they want, that they will be fine and cancer free for 20 years.

It really is a process we all go through to arrive at an answer we can be comfortable with, not necessarily an answer that is any more correct than one someone else has arrived at. Probably none of us are 100 % right, but probably not 100 % wrong either.

I'm not sure even time will tell.......
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
3 month PSA <.01 (different lab)


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/9/2009 2:15 PM (GMT -6)   
Boppa,

It probably does mean something if you have been having annual PSA testing. Certainly a second test to verify makes sense.

Without knowing your husbands original pathology info, it is really hard to say much more. If you can put some of his original numbers, surgery pathology, etc. in your signature, there are certainly some guys on here who can give you some more advice. Probably you should start a new thread as well !

Good luck !
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
3 month PSA <.01 (different lab)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/9/2009 2:26 PM (GMT -6)   
goodlife,

It is an assumed given, that a urologist/surgeon is going to suggest surgery, and if you went to a radiation oncologist first, they would suggest radiation. A well performed biopsy with a good pathologist reading it, still gives any us a foundation or basis for our cancer. And even if all of that is performed to the best of ability, it is still an estimate at best, a base point. And from that base point, we have to wade through a plethora of information: from books, the net, friends and family, medical pros, etc. When it becomes hard, is when it is insinuated or implied that the resullts will be about the same regardless of the primary treatment chosen.

As we all know, no treatment comes without its costs in terms of quality of life issues, it's kind of like the classic question, do you want to be stabbed with a knive or shot with a gun? Both hurt.

Going back to biopsies, people have to remember how random it can be, unless you have the more thourough satuation biopsies. I believe my cancer was well in place in my original biopsy 1 1/2 years before my dx. came in. The first biopsy just didn't poke the right area at the right time, and bingo, no cancer found. My point, our biopsies are just a starting point, I worked on the premise in my mind, when the 3rd one found the cancer, that there probably is more, and in the end, after surgery and the final pathology report came in, there was much more, and it had been there awhile.

Some of the attitude I pick up in here is to be expected, that is in classical denialism. It's very much a human nature thing. In denial, one can assume the appearance of being diligent in looking for the correct medical solution to their cancer, but in reality, they are looking for every possible excuse to disprove the obvious,and the facts at hand. In my lone opinion, that non-productive, and can lead to needles delays, and at the extreme, worsen the person's chance for containment.

David in SC
Age 57, 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
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18
 
 


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/9/2009 2:28 PM (GMT -6)   
Well said my friend, no disagreement from me.
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
3 month PSA <.01 (different lab)


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 8/9/2009 6:08 PM (GMT -6)   
David,

I agree with most of your last post. What I have found in my 10 year journey is that most urologists radiologists, and surgeons don't really understand PC and all it's varients. Most patients take their word as gosple, because they think he is an expert and don't question anything. They do everything from bladder, ED issues and many other things. The good ones may see 50 to 100 PC patients a year. Most are excellent surgeons or radiologists, but they don't specialize in PC and don't specialize in advanced PC. There is a world of difference in a doctor that only specializes in PC and has seen ALL treatments in ALL stages for tens of thousands of PC patients. The knowlege of about what test to perform and what tests are reliable and what treatments work is based on a lot of knowledge from seeing thousands of surgery and radiation patients, and a diagnosis is composed of the totality of many pieces of information, not just a biopsy and psa.
The radiologist who did my seeds and the one who did my IMRT are excellent radiologists, but all they saw was a G4+3 with a PSA of 40 and a bad prognosis. When I explained all the other information that I had, they had never even heard of half the tests. My surgeon at least heard of them but was unfamiliar with what they were, and he was trained by Sardino at Sloan Keterring. He was trained to cut and that's what he believed in. He's an excellent surgeon, but a poor diagnostician; all PC roads led to surgery. None of my doctors knew how a transition zone tumor acted biologically. My oncologist knew.
We continue to believe just because one is a good PC surgeon he knows everything about reoccurrances, micromets, advanced PC and diagonostics. It took me 9 years to figure out how little they really know.
I'll use a surgeon to operate on me and a radiologist to radiate me, but I won't use them to diagnose me if I have a reoccurrance.
PC is the only cancer left of all the other cancers in which the surgeon provides the diagonsis and recommends treatment. If you see a surgeon for breast ca or any other cancer you will always be referred to an oncologist not another surgeon. What have they learned that we haven't.
Also there is no way that a bone scan is going to show anything with a psa of .3; PC migrates to the prostate bed then to the lymph nodes then to the bones. By the time it reaches the bones it would be generating a ton of PSA unless it is a very rare varient.
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


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/9/2009 6:15 PM (GMT -6)   
Welcome to Barr and Boppa!

You've decided to join a very good forum having supportive members with a nice mix of treatments and experiences.

None of us here can give personal medical advice, but we can pass on what we have read or learned.

Your best advice comes from health care professionals, your best knowledge comes from personal self-study. Many of us here would suggest second and third opinions and I would do that as well.

Barr, a PSA reading of 0.3 is something to be analyzed. My surgeon starts taking some kind of action after 0.1, even if that action is just more frequent tests and surveillance. As others have said, knowing more about your annual PSA history would help. However, greater than 0.2 usually indicates a biochemical failure and a possible recurrence of PCa. Some institutions don't worry about taking action until the PSA passes the 0.4 level. You may be in pretty good shape depending on your PSA doubling time. Keep us posted.

Boppa, your husband's 0.11 reading is right at the level when a doctor should be closely watching him. However, if this PSA level came back from an insurance-directed blood test not from your urologist, you may wish to get a second test through the urologist with a lab he/she trusts. I'm not sure about the accuracy or sensitivity of a test given by the insurance group's lab. When you get the results of a test from a lab the urologist trusts, then you can go from there.

The best to both of you!

Barry
Da Vinci LRP July 31, 2007… 54 on surgery day
PSA 4.3 Gleason 3+3=6 T2a Confined to Prostate
6th PSA 06/09 still less than 0.1


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/9/2009 6:50 PM (GMT -6)   
JohnT,

You did bring up a good point I can relate to first hand. I have been through 3 bouts of the ultra rare porocarcinoma. I have been clear now, after 5 surgeries, including 1 extensive bout of plastic surgery to my scalp. At the time, I was one of only 38 known cases in American medical history. My surgeon did the right thing, on the last bout, he refered me to one of the best radiation oncologist in my state, and by sheer coincidence, he had one other patient, female, with the same ultra rare cancer. So with 2 of us, kind of made him the expert, and both our cases have been used in researching that strand of cancer. They can only guess an origin, but in my case, I was exposed to lots of formlyahyde when I was a machinist back in my early twenties, which is very dangerous from a cancer vantage. The point, my surgeon knew he was out of his league when the pathology came back. Even the American Cancer Society had never heard of that cancer or had any record of anyone with it. So yes, John, one can't be an expert in everything, regardless, that includes doctors, surgeons, and even specialists.

David in SC
Age 57, 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
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18
 
 


BARR
New Member


Date Joined Aug 2009
Total Posts : 7
   Posted 8/9/2009 10:59 PM (GMT -6)   
Ladies and Gents,
Wow! Thank you all for your thinking. and knowledge.
I was cured 12 1/2 years ago, y'know at age 52. (Surgery was my first and last choice then since even the radiologist looked at my physical state (thin/healthy) and said I should do the surgery. That my recovery would be best with surgery) So I left Cancer behind. that's why this is throwing me for a loop. Here's the letter I received advising the MRI/Bone Scan and Biopsy.
The letter is dated May 12, 2009 and arrives in July.
Barry is status post radical prostatectomy in 3/07 (that should read 3/97) for Gleason 6 disease, into but not through the capsule, negative otherwise. PSA was measured at 0.2 on 4/28/2009. In 10/08 this was recorded as 0.3. In 3/08, this was recorded as 0.2. (7/09 was 0.3)
The letter then goes on to suggest the MRI the bone scan and then the transrectal biopsies to determine if there is a true recurrence.
I recall my PSA when discovered was 4.8. I had prostatectomy no radiation or drugs post surgical. I entered into the original casodex study (I got the drug.)
So you all are much more knowedgable about the ins and outs of the disease.
My surgeon (Wein at HUP) has MUCH experience with prostate cancer doing many many surgeries annually. And while I trust his experience implicitly I think the letter to be 'form' - I got to a .3 and therefore this letter gets sent out. So what I was thinking was what makes .3 the magic number? Again does my PSA vary with the weather? With my psyche? Id? Is it seasonal? Can it change daily/weekly/etc? Before I get transrectal biopsies (such a pleasure!) what does the MRI (or as suggested the bone scan would be meaningless?) show? Am I better just going for the biopsies to definitively get the answer right away?
And again - people have cited higher PSA numbers and their Drs. seem to suggest a wait and watch.
So I don't know what to do. I am not sceptical by nature but it seems to me that batteries of tests which do not or could not show anything? should not be done but that if the biopsy is the best measure then I should do that? And that once moving down this path I am going to wind up Radiated.
And what are the short and long term effects of Radiation btw? I mean like ten years down the road kind of effects?
Thanks one and all for your kind concern. It is appreciated muchly.

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 8/10/2009 6:57 AM (GMT -6)   
Good Morning Barr,

Just got here and noticed your post. You have a couple of questions and so I will give you my take from what I have read about recurrence of PCa.

Most doctors will consider a 0.2 a biochemical relapse after surgery, some 0.4. With yours at 0.3 it would be something that should be investigated or at least watched. The MRI will look for suspecious lymph nodes for enlargement or any other signs of abnormality. The bone scan won't show any disease progression at the 0.3 mark but will be valuable as a base line in case futher scans would be needed. The biopsy honestly I don't understand at this point. Unless they can feel something on the DRE to target the biospsy needle, to me it would be more like a shot in the dark in finding anything.

Bottom line with the numbers and length of time since surgery, yes it is something that needs to be monitored. JohnT said earlier that there are a host of other tests that can be done to establish if the recurrence is local or systemic. But that would need to involve a prostate ocologist that specializes in PCa. The reason for determining if the disease is local or systemic will establish which treatment would be best, including doing nothing at this point.

Good luck and welcome to Healingwell
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 Apr 2009 .06
                   9 month Jul  2009 .08


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/10/2009 9:32 AM (GMT -6)   
BARR,
Welcome to HealingWell. Sorry you are here, but glad to have you. 1997 was your surgery? Will that's 12 years before relapse and it shows us to always keep our guard. So far the record for relapse that I have seen is 28 years. As to long term radiation affects, there are some such as fistula, scarring resulting inbowell issues, and permenent ED and incontinence issues. Most are rare but the concern is real. I had surgery and because my pathology was not so good, I also have radiation and hormone therapy. It has only been two years since completing IMRT radiation so we still have a ways to go before any new side effects. But I am happy where we are and I hope for the best. I extend that hope to you andperhaps you can get another 12 years out of radiation before attempting HT.

Again, welcome,

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!


BARR
New Member


Date Joined Aug 2009
Total Posts : 7
   Posted 8/10/2009 9:57 AM (GMT -6)   
Thanks Les... concise and to the point...
Can I get some information regarding other tests marking systemic or local? And treatments? Radiation is not the only treatment?
And the point is well taken that an oncologist specializing in PCa might have a better fix on this than my surgeon..So anyone know who that might be - in Philadelphia? I am presently involved with HUP with this so maybe someone from somewhere else? For a second opinion.

I just feel as if I have to slow this down. Also involved is the fact I will be moving from Blue Cross to Medicare in October. so there is cost factors involved as well.... though not to the point where my ultimate health is concerned. Is speed a concern?
Again - can anyone say what affects a PSA score? .
Much thanks.
Barry

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 8/10/2009 10:38 AM (GMT -6)   
Barry,
It is extremely difficult to find a Prostate Oncologist. The PCRI website had a list and discontinued it because of of complaints from drs that were not on the list.
The only other list I found was on US TOO.
On The East Coast:
Charles Meyrs, Earlysvill Va 434 964 0212
Maria Mallarino, Sarosota Fla 941 3777 9993
Daniel Petrylak, New Yorl City. 212 305 1731
Dan Costin, white Plains NY 914 684 2779
Robert Dipaola, New Brunswick NJ 732 235 2465
William Berry, Raleigh NC. 919 781 7070.

The only Dr I have heard of that has an excellent reputation is Charles Meyrs; I don't know anything about the others.
We need a better way to find Prostate Oncologists

I guess it's just by word of mouth.
On the West Coast there is Stephen Strum in ORE, Mark Scholz, Richard Lam, and Bob Liebowitz in Los Angeles, all highly regarded.
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


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/10/2009 10:45 AM (GMT -6)   
Barry,
After prostatectomy, PSA will only rise with th presence of prostate cells. There have been recorded cases of PSA rise in very small amounts below 0.1 but rarely above that number. Unlike when we still have our prostates when sexual or physical activity or infection can cause jumps in PSA. That stated, you need another PSA test to verify if there is an upward trend...If so, a visit to the radiaologist is not a bad idea...

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 8/10/2009 12:15 PM (GMT -6)   
Barr,

Just to clarify something...is this order of your PSA tests correct:
3/08 0.2
10/08 0.3
4/09 0.2
7/09 0.3

If so, then your PSA really hasn't changed all that much in the last 16 months, which is a very favorable. PSA can vary slightly as much as 0.1 in either direction, including due to differ test results from different labs.

I agree with Tony...get another PSA test and preferably from the same lab as the last test to try and keep all things equal.

At these levels it is very difficult to know exactly where the cancer is at. Generally this far out from surgery, good pathology, low Gleason score prior to surgery would almost indicate a local recurrence rather than systemic. But let your oncologist make that call. You may also be a candidate for just monitoring the cancer rather than treatment at this level, but that is a option only your doctor will know for sure.

I haven't had the radiation or HT therapies as others here have had. But my take on all of this...radiation is much more desirable for localized cancer. If the doctor feels that it is a toss up between local and systemic, he may want you to have both, which is also commonly done. If for some reason the doctor feels that this is a systemic progression, then radiation usually won't be considered and typically he will prescribe hormone therapy. The protocols used by doctors are every changing, and who knows what new medical protocol is on the horizon. Thus the importance of finding a prostate oncologist that is up-to-date on the latest protocols. You want to be treated with what is current today, not something was done yesterday so to speak.

Good luck on your journey,
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 Apr 2009 .06
                   9 month Jul  2009 .08


Geebra
Regular Member


Date Joined May 2009
Total Posts : 476
   Posted 8/10/2009 2:19 PM (GMT -6)   
Barr,

My recurrence was a lot faster than yours. about nine months post surgery PSA has began rising. I started to be concerned with PSA at 0.13, when next test showed 0.17 I decided to act. (By the time I talked to a couple of doctors and chose a treatment plan, my PSA was 0.27). Your PSA velocity is a LOT slower, so you can take some time to decide what to do. You PSA numbers do look a bit strange, going up and down like this. Is this all from the same lab? Also, can you share your PSA stats post surgery and from your annual tests? This will tell a lot about the dynamic of your disease. If it has been around 0.3 for years maybe you don't need to do anything other than active surveillance?

Father died from poorly differentiated PCa @ 78 - normal PSA and DRE

5 biopsies over 4 years negative while PSA going from 3.8 to 28

Dx Nov 2007, age 46, PSA 29, Gleason 4+4=8

Decided to participate in clinical trial at Duke - 6 rounds of chemo (Taxotere+Avastin)

PSA prior to treatment on 1/8/2008 is 33.90, bounced on 1/31/2008 to 38.20, and down at the end of the treatment (4/24/2008) to 20.60

RRP at Duke (Dr. Moul) on 6/16/2008, Gleason downgraded 4+3=7, T3a N0MX, focal extraprostatic extension, two small positive margins

PSA undetectable for 8 months, then 2/6/2009-0.10, 4/26/2009-0.17, 5/22/2009-0.20, 6/11/2009-0.27

Salvage IMRT + 6 Months ADT: Casodex started 6/12/2009, Lupron 6/22/2009, PSA 6/25/2009-0.1, T=516, 7/23/2009-<0.05, T<10, IMRT to start mid-Aug


BARR
New Member


Date Joined Aug 2009
Total Posts : 7
   Posted 8/11/2009 8:42 AM (GMT -6)   
Again I thank you all for your concern and thinking. I spoke to several other people and they are suggesting I get the MRI and the Scan (A base Line) but then with this information to get a second opinion before the biopsies and to see what those tests reveal.
So the scans are on the 12th. and someone also suggested the consult before the biopsies... so I will do that.
Much thanks... I will return with some results ..
My Dr.. COusin stated that to his knowledge the Urologist PC Surgeon/PC Radiologist usually had the most information as did PC oncologists. He also suggested that an MRI might have been done post surgery which could be used as a base line so I have to ask to see if that was done. This would show any alteration was 'new' rather than as a result of the surgery. (He suggested that so people facing surgery take note of that.)

The last PSA was from my Urologist Surgeon's lab and was a .3. Others before those last cited were in the neglible range so the 'creep' is new.

What is/are the difference(s) in the post treatment phase between hormonal treatments and radiation? What does radiation do to you ten years down the line versus hormones ten years down the line. (I always thought that the short term solution when first being diagnosed was what you got but rarely heard the long term outcome. We tend to do what is right for the then and not for the later. Or didn't think about it.)

Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 372
   Posted 8/11/2009 1:47 PM (GMT -6)   
I've been lying in the weeds , so to speak, reading all of your posts here which have been extrememly helpful to me post surgery. I've been meaning to jump in and join, just haven't taken the time to register. But I wanted to suggest to BARR, that an option for an oncologist who specializes in PC close to Philly would be Dr. Stephen Grubbs of Christiana Medical Center in Newark, DE. I consulted him prior to treatment, and w/o a dog in the race, he validated the process by which my wife and I reached our treatment decision. He also pointed out some other considerations to watch for since the female side of my fanily has been beset with breast cancer......he's knowledgable, easy to talk to, and it sounds like you're within driving distance. Now that I'm out of the forum closet, I have a few topics I'd like to weigh in on, especially since there may be more guys like me in the Mid Atlantic region who are looking for MD's options, etc.---------hope this helps first time out of the shoot!

PSA at Diagnosis-3.9
Biposy 8/19/08--4 of 12 cores positive; 5% involvement, Gleason 6 (3+3)
 
Surgery 1/26/09-DaVinci Robotic Prostatectomy at Presbyterian Medical Center/HUP-Phila, PA
Dr. David Lee
 
Pathology Report- Adenocarcinoma, no capsular involvement, seminal vesicles clear, lymph nodes clear, negative margins, Gleason 7 (3+4), Stage T2C, Prostate 61.8 grams, gland involvement 2-10%
 
Catheter removed after 8 days, totally dry at 3 months. ED issues continue, Viagra (via ADC) nightly (100mgs), VED use in earnest at 6 months. "Ball Park Frank" plumping at this point.
3 month PSA--<0.1
6 month PSA--<0.1


Geebra
Regular Member


Date Joined May 2009
Total Posts : 476
   Posted 8/11/2009 2:19 PM (GMT -6)   
Barry,

There are at least two uses for HT. One as part of a salvage radiation, the other as means to control PCa long term. The second is usually used with an intent to slow and control the disease, where salvage treatment is used with an intent to cure. The use of HT as part of salvage is usually short term (from six months to a couple of years), where is the second use is for a long term, either continuous or intermittent it is used while the cancer responds to HT.

There are numerous long term side effects of both, the radiation and HT, but major ones include for Radiation - ED, continence issues, colitis; for HT - inability to produce testesteron (with corresponding s/e like loss of libido, ED, depression, loss of bone and muscle, weight gain).

While none of these treatments are a walk in the park, you should not choose the by finding the one with the least side effects. It is a combination of effectiveness of the treatment (survival) and quality of life (long term side effects).

Talk to several docs, arm yourself with info, then make a decision. We are here to support you along the way.

Greg

Father died from poorly differentiated PCa @ 78 - normal PSA and DRE

5 biopsies over 4 years negative while PSA going from 3.8 to 28

Dx Nov 2007, age 46, PSA 29, Gleason 4+4=8

Decided to participate in clinical trial at Duke - 6 rounds of chemo (Taxotere+Avastin)

PSA prior to treatment on 1/8/2008 is 33.90, bounced on 1/31/2008 to 38.20, and down at the end of the treatment (4/24/2008) to 20.60

RRP at Duke (Dr. Moul) on 6/16/2008, Gleason downgraded 4+3=7, T3a N0MX, focal extraprostatic extension, two small positive margins

PSA undetectable for 8 months, then 2/6/2009-0.10, 4/26/2009-0.17, 5/22/2009-0.20, 6/11/2009-0.27

Salvage IMRT + 6 Months ADT: Casodex started 6/12/2009, Lupron 6/22/2009, PSA 6/25/2009-0.1, T=516, 7/23/2009-<0.05, T<10, IMRT to start mid-Aug


BARR
New Member


Date Joined Aug 2009
Total Posts : 7
   Posted 8/12/2009 2:27 AM (GMT -6)   
ggggggggggggrrrrrrrrrrrrrrrr
neither options are likable... what is life without a libido, and my boner - my home grown boner.... and incontinence !!! Geezzzz that's nice.
I can see where you get depressed... pissing all over yourself because your dick won't see the sky ever again! quality of life ! ? versus quantity ....
I will get back to you...
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