Dr Strum on pathology 2nd opinion and CT scans

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John T
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Date Joined Nov 2008
Total Posts : 4227
   Posted 6/3/2010 7:51 PM (GMT -6)   
2nd opinions on biopsy slides and Ct scans are often brought up on this forum. This is what Dr Strum has to say:

tephen Strum, MD>

The crucial take home lesson that seems to be falling on deaf ears over the years is the NEED FOR AN EXPERT REVIEW OF PATHOLOGY SPECIMENS. I have seen major changes in the pathology reading that can vary from finding NO evidence of PC to major changes in the Gleason score. Also, the pathology specimen can be tested with IHC

(Immunohistochemistry) and can yield findings that tell us a lot more than the Gleason score, the percentage core involvement (cores involved divided by total number of cores sampled) and more than the tissue involvement (PC tissue in millimeters divided by total amount of prostate tissue in millimeters). We are NOT using a great deal of information that is available to us in the form of the patient's tissue that has been sampled (biopsied). Sherlock Holmes would be going nuts about neglecting such important clues as to the nature of the PC. It is similar to doing a total body search on a 90 year old lady in a wheelchair at airport security and ignoring all the clues as to the PROFILE of every terrorist that has gotten through such "security". In years past I described the need to profile under the

heading of "Listen to the Biology". Nature declares itself; it is

just that we humans are too lazy or stupid to listen to the biology.

>6/11/09; CT Abdomen with contrast and CT pelvis with contrast

>

>Impression 1 No evidence of metastatic disease in abdomen or pelvis.

>No adenopathy

<Stephen Strum, MD>

Again, its the SOS (same old story or something more harsh) in that CT is just too crude a methodology to tell us the true status of the patient. I wish it were not the case but it is.

The CT scan as it is currently used is a blatant waste of money. It is way too insensitive to be of value in the initial staging of PC. The exception to this is when the PSA is high and there is bulky disease.

Often, in such cases, the bone scan will also be positive, but not always. Otherwise, the CT scans are of miniscule value.

Hovels AM, Heesakkers RAM, Adanga EM, Jager GJ, Strum SB, Hoogeveen YL, Severens JL & Barentsz JO: The diagnostic accuracy of CT and MRI in the staging of pelvic lymph nodes in patients with prostate cancer:

a meta-analysis. Clin Radiol63, 387-395, 2008.

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 DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology 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. G7, 4+3, approx 16mmX18mm.

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. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/3/2010 7:56 PM (GMT -6)   
Good info there, John. Just on the CT scan part alone, the millions of dollars that could be saved each year just in eliminating the unneeded ones only with PC dx guys, let alone useless scans with other diseases and cancers. Sounds like that could be a change that could be done without any harm or risk to the patient.

I can't remember the source, but I read elsewhere, that they estimate that perhaps 80% of all MRI's that are ordered are absolutely a waste of time and money in advance.

Too bad the simple and obvious changes to the health care system just cant be made, it would benefit every aspect of health care in general.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


rhb47
Regular Member


Date Joined Mar 2010
Total Posts : 208
   Posted 6/4/2010 6:41 AM (GMT -6)   
Another consideration on CT scans it that the radiation of 1 CT scan to the abdomen=234 chest x-rays. The National Cancer Inst. predicts 15,000 people would die of cancer from the radiation exposure of CT scans given in a single year. That's a really frighning statistic.

Renee
Husband diagnosed 3/10
Age 56, PSA 4.7, free 7.6%
Biopsy 5 of 10 cores positve-all right side-25% to 57%
Gleason 6
DaVinci surgery with Dr. Vip Patel scheduled 8/9/10
 


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 6/4/2010 9:53 AM (GMT -6)   
If you are interested in some of the things a pathologist can look at to evaluate prostate cancer, and to predict response to treatment, recurrence, etc., have a look at this letter from one of the world's leading experts:

http://www.prostapath.org/download/prognostic-predictive-markers.pdf

Of course, testing for the sake of testing does not make any sense. So each time one must ask the question "would the result of this test potentially make any difference in my treatment decision?" If not, the test may just be a waste of money. BUT I suspect many of these analyses are not a waste of money, but instead actually provide useful information. And yet very few pathologists use them.

By the way, if you had your primary slide reading done by a leading expert -- say, Epstein, Bostwick, Oppenheimer, would you still seek a second opinion?
Age 46.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5, 1.5
 


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 6/4/2010 10:04 AM (GMT -6)   
Mel,
If initially read by one of the experts then a 2nd opinion would not be necessary. The point to take away is that most pathologists read a number of slides of every disease out there and many are not used to seeing all the variations that PC cells may have. When Gleason set up his scale it was designed so 90% of pathologists looking at the same slide would come up with the same score, so it all ready has a 10% built in inaccurracy level and it was designed for the average. The inexperience of the pathologist would add to this error rate.
The other point Strum makes is that there is a lot more information that can be obtained from biopsy slides that is rarely requested or used.
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 DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology 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. G7, 4+3, approx 16mmX18mm.

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. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Shaheen10
New Member


Date Joined May 2010
Total Posts : 17
   Posted 6/4/2010 11:54 AM (GMT -6)   
 
Hello JohnT,
 
I got my second opinion. deatils posted this  morning. looks like I am going to have the same path as you Brachy/IMRT. Please share your experience with me. if you can. From the procedure itself, than recovey and post op. I am concerned about the IMRT portion too.
 
Thanks
 
Shaheen 10

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 6/4/2010 3:25 PM (GMT -6)   
Shaheen,
Since your email was not available in your profile I'll answer here.
The Brachy procedure was a 1 hour outpatient and I was door to door in 3 hours. No pain at all, much less than a biopsy. Had urinary frequency and urgency for about 4 weeks, Flowmax and Ibupropin helped a lot and it did not affect any of my daily activities from day 2 on. You just have to be near a bathroom because you are going at least every hour for the first few weeks. At night if you take an Ambien yoou can make it through the night without going.
The IMRT was a piece of cake. The only problem was drinking 32oz of water before each treatment and holding it. I kept a bottle in the car in the event I couldn't make it home and did use it on occasion.
No affects from either treatment, no fatigue, no ED and no bowel issues and no leaks.
Get A Brachytherapist that has done at least 500 procedures and make sure he uses a urologist to scope the bladder right after the procedure for any seeds. Also insure that he does a CT scan in two weeks after to check the seed dispersion. It helps to take metamucil and avoid all alcohol and caffine during treatments. My PSA was .2 six months after treatments, down from 40.
If you have to take HT to shrink your prostate before treatments (if it is above 60mm) then use Casodex and proscar, not Lupron as the side affects will be about 20% less and the shrinkage the same or better.
If you have any other specific questions you can email me by clicking on my profile and seeing my email,
Good luck, you won't have any problems if you get top doctors.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology 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. G7, 4+3, approx 16mmX18mm.

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. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 6/5/2010 8:48 AM (GMT -6)   
I am not being argumentative with my following comments but I find this advice to seek the counsel of "expert pathologists" on a number of PCa forums and typically the names are the same. Are they truly experts and how did they come to be so widely cited? Are all other pathologist incompetent? And what does it matter if the gleason is 4 or 3 or any combination? Does it change the diagnosis or the treatment options? Is there a high incidence of PCa diagnosis that is later reversed on reexamniantion?

I sort of feel the same way about the second opinion. It may raise your level of confidence in the treatment recommendation but then it may just confuse if the second opinion has a bias towards a particular modality that is different from the original recommendation.

Just some musing.
Don
Diagnosed 04/10/08 Age 58 at the time
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear and chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Lupron injection on May 15 and every four months for next two years
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 to be full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
Completed IMRT/IGRT 09/11/08.
PSA 02/08 21.5 at diagnosis
PSA 07/08 .82 after 8 wks of hormones
PSA 10/08 .642 one month after completion of IMRT, 6 months hormone
PSA 03/09 .38 six months post radiation and nine months into hormones
PSA 06/09 .36 or .30 depending on who did the test
PSA 09/09 .33 one year after IMRT and 16 months into hormone
PSA 03/10 .32 18 months after IMRT Still on hormones


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 6/5/2010 10:31 AM (GMT -6)   
Don,
These patholigists are widely recognized by their peers of being the best. There may be others that are as capable, but are not known. A 2nd opinion changes quite often and it makes a huge difference in your treatmtment choice if you have 3, 4, or 5 cells. it is expecially relevent if they find no cancer, which has occurred regularly. An expert pathologist can also identify varients and run other tests like plodiy analysis to gain more information.
PC is not homogenious, it runs a whole scale from being harmless to extremely dangerious. If you're fighting someone, the 1st step is to understand exctly what you are fighting so you can use the right tools and tactics. If you don't take the time to understand what you have you are fighting blind.
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 DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology 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. G7, 4+3, approx 16mmX18mm.

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. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 662
   Posted 6/5/2010 12:00 PM (GMT -6)   

I agree 100% in getting a second opinion on all health care related matters of any importance. However, I as don826, don’t want to sound argumentative but, I would get a second opinion regardless of what particular individual initially interpreted my tissue, “expert” or not. Inaccurate diagnosis or errors in dictation can and do occur. Having said that, I believe it is probably low yield in actually changing what therapy is initiated. I’ve only been here for 6+ months but I never remember anybody posting that a second opinion by the expert pathologist change things dramatically. Additionally I think it is important to note that if a histopathologic diagnosis is unclear a second opinion is usually initiated by the original pathologist.    Pathology is a very demanding and disciplined medical specialty. To maintain the privilege to interpret tissue the individual pathologist must be current in ongoing quality assurance programs. Overall we are so luck in the US to have extremely high quality pathology services. I realize that it may not be that way in other places.


Age 51, PSA 08/31/2009= 6.8, DRE Neg.
Biopsy 9/24/09 =10 of 12 positive. Gleason 6. involving up to 75%
da Vinci at Wash U, Barnes on 11/02/09 Non-Nerve Sparing on Rt.
Modified Pathology, Gleason 4 + 3 = 7. Gleason 7 present throughout Prostate involving 20% of the Gland. Surgical Margins Free of Tumor,
4 of 4 periprostatic Lymph Nodes Negative, 10 of 10 pelvic Lymph Nodes Negative. Seminal Vesicles tumor free. Extracapsular extension is absent Perineural Invasion is Identified, Vascular Invasion is not identified.
Post-op PSA 12/10/2009, Undetectable  <0.01
Post-op PSA 05/03/2010, Undetectable  <0.01
I hate this crap
Moved by individuals like Living1963

 


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 6/5/2010 12:02 PM (GMT -6)   
don826 said...
I am not being argumentative with my following comments but I find this advice to seek the counsel of "expert pathologists" on a number of PCa forums and typically the names are the same. Are they truly experts and how did they come to be so widely cited? Are all other pathologist incompetent? And what does it matter if the gleason is 4 or 3 or any combination? Does it change the diagnosis or the treatment options? Is there a high incidence of PCa diagnosis that is later reversed on reexamniantion?
Don, that's a fair question for someone in the learning-mode to ask.
 
I would largely agree with John T's comments, but will offer this re-statement:
Pathologic examination of any tissue in the setting of potentially life threatening disease, such as cancer, probably warrants a second, expert review. Prostate cancer tissue poses the additional challenge of Gleason grading which is done by visual determination. For this reason, Gleason scores sometimes vary between pathologists. This is an issue that every patient should be aware of.  If sent to your local labs, the pathologist might be examining kidney tissues, then your prostate tissues, and then someone elses liver tissues.  Yours might be the only prostate tissues they look at that day.  At one of the recognized labs, your tissue will be examined by someone who is expert in prostate tissue.
 
I would only take exception to John's characterization that the results "quite often" change when reviewed by experts.  From my observations, I would say they "sometimes" change.  I would say they "quite often" do not change, but having the expert review gives one a sense of confidence that you are understanding the biology of your cancer, and can then move to the next step of chosing a treatment appropriate to the biology.  This is why it is so important...

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 6/5/2010 1:45 PM (GMT -6)   
Good stuff as usual John, I am a big fan of yours and witnessed your postings and growth in knowing PCa as the dragon it is. Now for fun guys do the math: atleast 18 variant types of PCa have been identified (by these expert guys), there are 3 types of DNA ploditiy analysis's on any PCa type, so your small town pathologist is going to know exactly what he is looking at so as to classify it and break it all down???? Most patients probably never had a ploidity analysis, is it important? Can be really important for the high risk number patients or scenarios, as to drugs effectiveness and there prognosis.

Weird PCa's you hope you are not found with or anybody would have: small cell, signet ring, squamous cell and a couple other variants, info found at www.prostate-help.org

It is stranger than fiction in this jungle of PCa.
Youth is wasted on the Young-(W.C. Fields)


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 6/5/2010 4:46 PM (GMT -6)   
Doesn't a lot of the "get the best experts and the most cutting edge advice" versus "use the local guy and trust him" issue -- what someone could call "the JohnT versus David debate" (though I would not want to personalize it and I have terrific respect for both of them)come down to how much money you have? 
 
If you have enough money to travel, take time off from work, stay in another city, pay docs who will give you a lot of attention and have enormous knowledge but don't take insurance (or at least are out of network), etc., then you can personally consult with Dr Strum or Myers or Lam or whomever, get a super detailed biopsy analysis from Dr. Bankoff, go to Fred Lee for Color Doppler, travel to the Datooli clinic for your radiation, go to Holland for a Combidex scan (when it used to be available!), and so forth.  But the reality is that the overwhelming majority of people -- no matter how educated they become about prostate cancer -- simply can't do these things.  So they must obtain their treatment from decent local doctors who know the basics and usually try their best.  
 
A few people buy Porches.  Most people drive Fords.  The people who drive Fords are pretty smart; they know that Porche is a better car.  But they can't affford a Porsche.  And most of the time - though not always - a Ford gets you to your destination.
 
 
 


Age 46.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5, 1.5
 

Post Edited (medved) : 6/5/2010 4:53:57 PM (GMT-6)


BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 6/5/2010 5:12 PM (GMT -6)   
Great porshe/ford analogy medved, but some people can afford the porshe, but still drive the ford. And with PCa it's well beyond a vanity issue. It's verfy often life and death. So if you can stretch you must. I clearly understand that for many you can't and that's very unfortunate. A very difficult issue/decission. It seems they all are.
Dx with PC Dec 2008 at 56, PSA 3.4


Biopsy: T1c, Geason 7 (3+4) - 8 cores taken with 4 positive for PCa, 30% of all 4 cores.

Robotic Surgery March 2009 Hartford Hospital, Dr Wagner
Pathology Report: T2c, Geason 8, organ confined, negitive margins, lymph nodes negitive - tumor volume 9%
nerves spared, no negitive side effects of surgery

One night in hospital, back to work in 3 weeks

psa Jun 09 <.01
psa Oct 09 <.01
psa Jan 10 .07 re-test one week later .05
psa Mar 10 .28 re-test two weeks later .31
psa May 10  .50

Aril 10 MRI and Bone Scan show lesion on lower spine, false positive. 
 
Started HT 5/25/10 with 3 month shot of Trelstar. SRT scheduled for late July


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/5/2010 5:23 PM (GMT -6)   
med, i think you made it clear, just want to be sure there is no johnt vs. david thing going on. I consider JohnT well versed, and a good asset here.

but i think you make a good point, unless i am reading too much into it. your "car" analogy is dead on right to me. in reality, i really drive a ford, because its what i can afford, and it gets me from A to B without issues, but my heart will always be for Lamborghini. Can't afford to rent one for the weekend, let along own one. lol.

many men here are just like me, i went through my PC journey totally unemployed, my dx, came a month after my lay off notice. my former boss paid my cobra payments out of the goodness of his heart, so that i could get my operation, until my wife's insurance had an open enrollment period, where they had to pick me up with out any pre-exisiting conditions limitations. i was very very fortunate.

i think the advice of advanced testing methodolgies, 2nd and 3rd opinions from reknowned undisputed experts is great, in a perfect world. but not all of us have the time, resources, and perhaps logistics to make things happen like that. its not so much local doctors vs. other experts in other areas, its working with what you have to work with. i hate how almost everything in life comes down to money, but its a rule that's hard to beat.

speaking only as an american, i feel fortunate that we live somewhere where we have the level of health care that we do have access to. of course there are bad doctors, but i still believe they are the extreme minority.

some of our pc journey is just "circumstances", circumstances unique to our individual bodies, its make up, perhaps even down to the genetic level of things, including family history, etc.

no need to mention names, but we have brothers here, that had the best of the best work on them, at the best of the best faciliities, yet they were still faced with problems and almost instant recurrance, such is the nature of cancer in general. PC in particular doesnt follow the rules or common sense logic most of the time.

for most of us, we do the best we can, with what we have. just how life is sometimes. i have no regrets in that department.

though everytime i see or hear a real lamborghini, still makes that flutter in my heart, and double checking my powerball ticket, lol.

david in sc
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 6/5/2010 7:47 PM (GMT -6)   
Medved,
I think you are off base. Look at Ohio State, Andrew, with no money and no insurance he received some of the best care available. All it took as a little bit of work.
As for me I'm on Medicare with Tricare Supplement and all of my treatments were covered including 2nd opinions from Dr Scholz, Color Doppler from Dr Bahn and my Combidex MRI. All of my scans including MRIS , bone and CT, and 2nd opinions of biopsies were also covered. My whole PC adventure over 10 years cost about $600 out of pocket. I used miles to go to Holland. You can get the best treatments if you know what to ask for and who to go to, and if you have basic insurance or Medicare it's all covered. Even if you have to pay a few thousand out of your own pocket to travel to see someone, it's less than the cost of a vacation and you are talking about your life here. It costs me $45 to get a phone consult with Dr Scholz, which I do twice a year because it's a hassle driving 150 miles to see him, but I wouldn't hesitate flying back from Idaho to see him if I had signs of a reoccurrance instead of going to someone local.
By the way, even though I can easily afford a Porche, I drive a 8 year old Dodge Truck and a 12 year old Toyota 4runner. It's all about priorities and my health is my top priority, and I'll spend time and money to get the best if I have to, but thus far it hasn't been necessary.

JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology 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. G7, 4+3, approx 16mmX18mm.

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. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/5/2010 9:25 PM (GMT -6)   

Said I did everything wrong? Wonder how many brothers here would agree on that? Gee, had 3 biopsies, had a fast climbing PSA with a Gleason 7,
couldn't qualify for seeding in my area, robotics was too new in my area at the time I had surgery, my surgeon has a good reputation and had done hundreds of open surgeries, hmm, when recurrance was confirmed, against my fears, I went ahead and did the SRT anyhow. Does that sound like someone that did everything wrong to you? My other complications with strictures/catheters are unique to me at this point, not the result of bad medical treatment. I went to the hospital that has the best reputation in my entire state, gee, I did that wrong too?

I would never say that about another brother's path here with their PC journey.  Even if I felt that way inside, I would have enough respect to keep that thought to myself.  Unless someone walked in my exact paths, with the exact choices I had at certain times, its totally foolish to say that I did it all wrong.  Couldn't imagine anyone believing a nonsense statement like that.

David in SC


Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17

Post Edited (Purgatory) : 6/5/2010 9:53:23 PM (GMT-6)

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