What you don't know can kill you.

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John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 10/19/2009 2:48 PM (GMT -6)   
 
Interesting article stating that there is a large difference in surviving cancer, depending on where you get treated.
This backs up my arguement that everyone should get 2nd opinions from doctor's specializing in their individual cancer.
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


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 10/19/2009 3:13 PM (GMT -6)   
John T, the article is interesting and I doubt anyone who reads it would be surprised by the summary. However, the reality is that not everyone can afford thousands of dollars out of their own pockets to get second opinions from the leading cancer centers plus the cost of travel to and from these centers. I had contacted an oncologist specializing in recurrent PCa at Memorial Sloan Kettering in NYC - an easy railroad trip from our home. The doctor's secretary told me two things that turned me off immediately: first, they don't accept private insurance and the cost to me would be $1500 and $2000. Second, the doctor would then decide if my husband's case was interesting enough to "take on the case." If he decided to take on my husband's case, there would be a two month wait to see him. When you're fighting cancer, who has two months to wait for answers?

Many of these centers are research centers - as is Sloan Kettering. They receive hundreds of millions in grants to do research. If the individual case will not boost their success rate, they're not interested. That's not health care, that's business.

My husband was treated by a local urologist with an excellent reputation - in fact, two doctors we know use him for themselves. He is accessible, kind, caring, and willing to spend time answering questions. He may not have the pedigree that someone at Sloan Kettering has but at least he treats me and my husband like people rather than lab animals. And he got the job done with minimal sound effects.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (extraprostectic extension in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Gleason 3+4 (no change from biopsy). PSA results: April 2008 0.1; May 2008 0.0; August 2008 0.0; November 0.0; February 2009 0.0; May 2009 0.0; August 2009 0.1; September 2009 0.3. Met with radiation oncologist and began process for salvage radiation. CT scan and bone scan done on October 8. One spot on bone scan (clavicle) being investigated. Third PSA taken on October 16 - PSA IS UNDETECTABLE! Next PSA scheduled for early December. Urged not to begin radiation treatment until it's needed (no problem there!).


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/19/2009 3:21 PM (GMT -6)   
Interesting to note, that one of the cancers that do not reap significant benefits by going to the mega-centers is prostate cancer...You can be treated in a local environment for a local disease quite well...Obviously not so clear for the advanced guy...

Tony
Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
Hormone Therapy May '07 to September '09 ~ Currently off.
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (October 7, 2009): <0.1

My journey is at: www.caringbridge.org/visit/tonycrispino

My InfoLink page is at Tony's Prostate Cancer InfoLink Page

STAY POSITIVE!


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 10/19/2009 4:18 PM (GMT -6)   
Tony,
The fact that all treatment options and now that the experience of the center have little difference in cure rates of low grade localized PC is interesting. It just could be that these cancers are not very dangerous to begin with.
As you stated there is a big difference in high grade PC and advanced PC.
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


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/19/2009 4:45 PM (GMT -6)   
It could be but I am certain some were dangerous. I would place low grade and localized in the lower risk category. High grade or advanced in the high risk category. Of course you define which ones are not dangerous. I personally cannot just based on that information and I know we don't have a test that can. As you know, a Gleason 6 with 1 in 16 cores positive and completely localized at surgery, can still kill. And a Gleason 8 stage III case can outlive the disease.

I doubt any center can be that selective on which walks through the front door.

Tony
Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
Hormone Therapy May '07 to September '09 ~ Currently off.
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (October 7, 2009): <0.1

My journey is at: www.caringbridge.org/visit/tonycrispino

My InfoLink page is at Tony's Prostate Cancer InfoLink Page

STAY POSITIVE!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/19/2009 4:48 PM (GMT -6)   
Sephie,

You post really angered me reading it, not because you wrote it, but because of the cold hearted, money grabbing, ego fulfilling attitude they gave you at that clinic. That is deplorable. No one should be treated in that manner at the expense of someone else.

I agree with you too, not all of us have the resources and logistics to get all the high end opinions that are out there, and due to money and insurance (or lack of it) we have work with what we have in our grasp. Fair? Not really, but life for most of us.

I am glad your John still is getting good advice and treatment.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 10/19/2009 5:21 PM (GMT -6)   
I just read this and not sure I have much of an opinion. For stage 4 prostate cancer patients the 5 year survival is 71% at major centers and 38% at locals. I believe there would be a lot more questions to ask before accepting those numbers. What was the median age of the patient? I bet at the major centers the age would be younger than local hospitals. Also what is the median Gleason score? Those are just basic questions it does not address. I do however think proper diet and exercise coordinated with a great mental attitude will help regardless where you go. Thanks for posting because I always like fresh information.

peace to you
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
PSA OCt 15th 2009 is .11

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%


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/19/2009 5:41 PM (GMT -6)   
Dale,
I agree whole heartedly agree that one with recurrent advanced prostate cancer should seek out a major center involved in many clinical trials and armed with a strong reputation. As the article states, many local centers can do well with localized disease. For me that wasn't enough and I went to a large center for local treatment. Still did not get the results I hoped for but I gave myself a best shot at it.

Tony
Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
Hormone Therapy May '07 to September '09 ~ Currently off.
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (October 7, 2009): <0.1

My journey is at: www.caringbridge.org/visit/tonycrispino

My InfoLink page is at Tony's Prostate Cancer InfoLink Page

STAY POSITIVE!

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