Mis diagnosed for 10 years

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John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 11/18/2008 10:04 PM (GMT -6)   
 My PSA started rising about 10 years ago; it's in the 30s now.I'm 63 years old.I have had 12 biopsies and an endo rectal MRI, all were negative. I saw 5 different urologists at 3 major university hospitals and all recommended that I keep getting biopsies every year.
4 weeks ago my 12th biopsy of 25 samples came in positive in 2 cores, Gleason 6, less than 5%. I started to interview surgeons. My wife's oncologist suggested that I see a prostate oncologist for a 2nd opinion before I made any decisions on treatment, best move I ever made.
The doctor said my cancer was statistically insignificant and should not be treated, but he was very concerned about my PSA history and feared that the urologists missed something because there was no way the cancer that was found could cause a high PSA. I had a PCA3 test and it came in 42, 35 is high normal. He also sent me to a specialist who does targeted biopsies using doppler color ultrasound. I just got the results, a tumor in the transition zone that all the other biopsies and the MRI didn't pick up.
Because of the location of the tumor, surgery is not an option. I'm getting bone scans next week and the doctor says I may have go to Europe to get my lymp nodes tested. This is the first I heard of this, any idea of what Europe does that the US doesn't?
I almost had surgery for no reason, and that's scary. I only wish that I had found this doctor 6 or 7 years ago as he is working to find out what is really the cause instead of just following the standard protocals.
I don't know how this will eventually end up, but I learned more in the last 3 weeks that I had in the past 10. Here's what I learned:
 
1. A large number of prostate cancers are missed staged, either too low or too high. Some think about 50% are staged incorrectly.
 
2. After 12 biopsies, I'm convinced that doppler ultrasound target biopsies are the only way to go. If nothing is found there is a map created that can be used as a base line to see if there are any changes. There are only three doctors in the US that use color doppler in biopsies.
 
3. Most urologists don't sample the transition zone and if they do the needle doen't go in far enough or goes in at an angle that hits only the edge. 25% of cancers are eventually found in the transition zone.
 
4. Uroligists are quick to recommend surgery even though that a high % of cancers are staged incorrectly.
You need correct staging in order to choose the right treatment option and most doctors don't investigate all possibilities in staging, they just take the pathology reports alone.
 
5.The best advice I can give to anyone just diagnosed is to get a 2nd opinion from a prostate oncoligist, there are about 30 in the US and if you get a biopsy get it done with a doppler ultrasound.
Two resources that I wish I know about years ago.
 
John T
 
 

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 11/18/2008 10:51 PM (GMT -6)   
Hi John,
First I like your post, but I am a gonna inject some of the points I have learned. As a PCa layman, your PSA is very high for a Gleason 6 and the likelyhood of spread is evident. But the suggestion to test the lymphatic system sounds right though I am certain you don't have to go to Europe to do so. You are very correct about the staging issue but almost all are staged as T1C after a biopsy done after an elevated PSA. Even though there is no such thing as a T1 after surgery using the AJCC 2007 cancer staging system. T1 is correct in a clinical biopsy after PSA screening, but T2 is assigned if the DRE is positive. So 90% of cancers are accurately staged according to AJCC for clinical staging. From there, it is rare that stage 3 is identified clinically, but it can be if more accurate tests were run. Color Doppler is an aging system but it can accurately stage a stage 3 tumor as can a pelvic MRI and a Prostascint. Stage 4 is more commonly diagnosed clinically than stage 3 because it will commonly show in bone scans and even xrays. But stage 3 is an oddball. That stated, a standard biopsy is accurate enough if a person has selected surgery since the prostate will be thouroughly examined after the procedure. DRE and needle biopsy are peripheral zone tests and you are right, they don't touch cancer deep inside the prostate. That won't necessarily change the treatment options though because it is only if the peripheral zone is penitrated that you find advanced disease.

Your point #4 is partially correct, urologists use biopsy, DRE, PSA, and bone scans, before recommending surgery. And my oncologist believes that my pT3b is better treated after surgery with adjuvant hormone therapy and radiation, even if it was found that I had stage 3 disease before surgery, it was still a best option. So do three other oncologists I have spoken to. My oncologist is a reknowned prostate oncologist. I would be interested to see where you read that there are only 30 PCa oncologists in the US (I bet mine is on that list). I know there is much hype about three in particular, Strum, Lebowitz, and Myers. But the institutional oncologists don't agree at all levels with these guys because there are no controlled studies that show that they truly have improved success rates. But people are paying big dollars to see them. Your best point is the get the second opinion. I absolutely agree that too many patients proceed with treatment without it.

I wish you the very best in healing. Watchful waiting is a good option but watch that PSA. That is very high!

Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 11/19/2008 9:16 AM (GMT -6)   
Your situation is one of the most complex I have heard. Regardless, all of us have had to deal with mixed messages, various opinions, and at least some amount of confusion regarding our PC journey. Unfortunately, doctors are limited by their biopsy reports, and residual information. I can sympathize greatly with your frustration. Tony is one of the most knowledgeable persons on PC. He has saturated himself with information and practical knowledge from others. If you read back on this forum you will find where he has guided many people.

There is one thing we know for sure - that is if you have a high PSA there has to be a reason. It does not necessarily mean cancer, but there has to be a reason. If the other reasons for high PSA are eliminated, then it points to cancer at some location or locations. I hope that location is confined. As you are gaining new knowledge I would encourage you to digest it and keep digging. Very likely you will continue to learn new things, put the puzzle together until you reach the point of having complete confidence in what you should do next.


RB
Age 61 (now 62)
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA <.04
2nd Post PSA <.1 10/30/2008

Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 11/19/2008 10:36 AM (GMT -6)   
Welcome to HealingWell! Sorry to hear about your ordeal over the past ten years and am happy to hear that you are getting to the bottom of it. Best wishes in your treatment decisions and please keep us posted!
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Oct. 10, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 11/19/2008 11:06 AM (GMT -6)   
Hello John,

I am surprised that your doctor would recommend a trip to Europe for lymph node testing. There is a technique using iron oxide particle and an MRI that yields very good results in the detection of lymph node metatasis. I am attaching a link to an article on the procedure for you to read if interested. However, a trip to Europe still sounds like a good idea!

http://www.prostate-cancer.org/resource/pdf/Is7-4.pdf

Page 10 is the full article. Also some other interesting articles to consider for someone just beginning to look at options.

Best to you,
Don
Diagnosed 04/10/08
Age 58
PSA 21.5 (first and only test resulted from follow up visit to emergency room for kidney stone. first time for kidney stone too)
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear
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
PSA test on July 14, 08 after 8 weeks hormone .82
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.
Second Lupron shot 09/11/08
Next PSA test by oncologist 03/09
 
 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 11/19/2008 11:39 AM (GMT -6)   
John,
 
Transition zone tumors are often larger with high PSA's however, the reports I've read have said, transition zone tumors are less dangerous often times as well. I hope this is true of your case :>) By the way. Aren't lymph node disections a common procedure here? Though they were.
 
Good Luck to you.
 
Swim
 
 
 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 11/19/2008 12:05 PM (GMT -6)   
OOPs...mispelled thought. Wishing you all a great day! wink
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 11/19/2008 12:13 PM (GMT -6)   
Video on Color Doppler ~ Click Here!
 
I think this doctor does go into why Color Doppler is seldom used...
 
Tony

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 11/19/2008 3:30 PM (GMT -6)   
Thanks guys,

These are some really good points. I know my case is unique, but in my case doppler ultrasound found a tumor that multiple biopsies and MRI didn't find. The tumor may not show, but doppler sees areas of increased blod flow that are then targeted for biopsy.

JT
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