Nomagrams for newly diagnosed PCa

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John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4245
   Posted 1/31/2009 3:14 PM (GMT -6)   
There are a lot of new people on this site and their main question is what should I do and what is the best treatment. Unfortuanately there is no clear cut decisions.
I'm surprized how many doctors don't use the available nomagrams to at least inform their patients of the probabilities of sucess of the treatment options they are considering.
Nomograms are formulas used to predict the probable outcome of different treatment options, based on data from thousands of prostate cancer patients. You plug in your own specific data such as PSA, Gleason grade, number of positive cores, % in cores ect. They are not perfect but they can provide a lot of information on which a more sound decision can be reached, and they can lead to better questions, like why are you recommending this treatment when the nomograms show it only has a 20% chance of sucess in my case.
Nomograms can be downloaded from the Slone Kettering web site and you and your doctor can use them in determinine what is the best option for you and your particular situtation.
The PCRI web site, in the "newly diagnosed" section has a paper by Dr. Mark Sholtz on how to use nomograms and adds a few more pieces of information to them to make them even more useful. If every newly diagnosed patient used these tools along with his doctor it would reduce the numbers of reoccurances and some of the horror stories that we read every day on this site.
JohnT

I had a psa of 4.4 in 1999 and steadily increasing psa every 3-6 months before reaching 40 in 5-08.Free psa ranged from 16 to 10%

I had biopsies every year, 13 total in all. I saw 5 different doctors, all urologists or urological oncologists at Long Beach, UCLA, UCSF and UCI and had an MRIS at UCSF in 2007. All tests were negative and I was told that because of all the biopsies I most likely didn't have PC, but to keep getting biopsies every year.

in Oct 08 my 13th biopsy of 25 cores indicated 2 positive cores, gleason 3+3 less that 5% in 2 cores. Doc recommended surgery.

2nd opinion from a prostate oncologist, referred by my wife's oncologists said cancer found wis indolant and statistacally insignificant, but PSA histor was a major concern and ordered a few more tests.

Color Doppler ultrasound with targeted biopsy found a transition zone tumor 18mmX16mm, gleason 3+4 and 4+3. CT and bone scans clear, but Doc thinks that there may be lymph node involvement (30% chance) because of my high PSA, and referred me for a Combidex MRI in Holland, currently scheduled for Feb 14.

Changed diet and takiing supplements while I wait. The location of the tumor plus the high psa make surgery an unlikely option. I'm still evaluatiing all treatment options and will make a decision once I get the results of the Combidex scan.

JohnT


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/31/2009 3:47 PM (GMT -6)   
Excellent John- makes me wonder how many experts even bothered to assess their patients properly and/or inform them directly with straight talk and numbers, kind of unbiased factual information. How many uro-surgeons either get the pathology directly from the experts(some do) or tell patient it even could be reviewed or even should be reviewed prior to their services???? Why fuss about these docs???

Dr. Scholz was working with Dr. Strum years ago, they are both very good oncologists whom know alot on PCa and it shows if you look at their material, methods etc. Dr. Strum moved out of California and published the book A Primer on Prostate Cancer . They both have websites with alot of information.

Also, Dr. Strum works with prostate-pointers group in a thing called P2P  (patient to patient) where by if you join that group you get to read up on new warriors just diagnosed and with their history and data they turn over to docs like, Dr. Strum and other docs respond for no charge as to what things they should consider knowing or doing as to testing and assessment parameters, he does not tell them their modality to take necessarily.  Reading the info is fabulous, alot of times he points out where the other docs made either errors or less than complete information of which they were basing a treatment or protocol on that was not fully assessed properly (imagine that from other experts usually uro-dcos) , perhaps much to patients peril or maybe being unnessesary  or more risky, or being right on the money (per se),etc. You would have to read them and see them in order to have an judgement on his offerings and work in doing this. 


 

Post Edited (zufus) : 1/31/2009 7:50:59 PM (GMT-7)


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 1/31/2009 5:42 PM (GMT -6)   
Yes I have often wondered why they don't make greater use of them and demonstrate to the patient why certain courses of action may be better. When first diagnosed and after a couple of urologist consultations, the only one to do this and give me a copy of the nonogram was the radiation oncologist and his recommendation was surgery was probably the best option.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 681
   Posted 1/31/2009 7:31 PM (GMT -6)   
John T said...
There are a lot of new people on this site and their main question is what should I do and what is the best treatment. Unfortuanately there is no clear cut decisions.
I'm surprized how many doctors don't use the available nomagrams to at least inform their patients of the probabilities of sucess of the treatment options they are considering.
Nomograms are formulas used to predict the probable outcome of different treatment options, based on data from thousands of prostate cancer patients. You plug in your own specific data such as PSA, Gleason grade, number of positive cores, % in cores ect. They are not perfect but they can provide a lot of information on which a more sound decision can be reached, and they can lead to better questions, like why are you recommending this treatment when the nomograms show it only has a 20% chance of sucess in my case.
Nomograms can be downloaded from the Slone Kettering web site and you and your doctor can use them in determinine what is the best option for you and your particular situtation.
The PCRI web site, in the "newly diagnosed" section has a paper by Dr. Mark Sholtz on how to use nomograms and adds a few more pieces of information to them to make them even more useful. If every newly diagnosed patient used these tools along with his doctor it would reduce the numbers of reoccurances and some of the horror stories that we read every day on this site.
JohnT

Excellent point.  This website has taught me more about my condition and PCa than any doctor I have ever consulted.  Like many of you, I had no idea what a nomagram was or what my diagnosis meant or how I should be treated.  Fortunately my decisions appear to have been ok. That could have very easily not been true.   I now have a better idea about my future.
PSA up to 4.7 July 2006 , nodule noted during DRE
Biopsy 10/16/06 ,stageT2A
Aggressive Gleason 4+4=8  right side
DaVinci Surgery  January 2007
Post op confirms gleason 4+4=8
No extension or invasion identified
Few continence problems
PSA 90 day (-.01)  , (6 month -.01) , (9 month +.02) , (1 year +.02) ( 18 months +.02) (two years+.02)
One side nerve spared
success but some plaque with bimix 
born in 1941

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