possible lymph node involvement - nothing left to do

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glass guy
New Member


Date Joined Oct 2008
Total Posts : 18
   Posted 12/15/2008 7:50 PM (GMT -6)   
went to the urologist today.  got the results of the 6 core prostate biopsy.  negative.  should be good news but the latest psa was 16.37 - up 4 points from a month ago.  dr. says "most likely" in the lymph nodes.  will not do a lymph node dissection.  reason:  won't matter.  the only treatment would be the eligard already being used.  so all is left is to sit and wait and sit and wait and sit and wait.  and take another shot every 6 months.
 
not too happy with this "treatment plan".  i would prefer to KNOW if it's in the lymph nodes and if there is something that could be done.  can't an ultrasound detect if there is lymph node involvement?  yes, the whole area was radiated but for goodness sake there must be an option.  there are absolutely no symptoms and the thought of just sitting until the big C decides to rear its ugly head somewhere else is unimaginable and intolerable.
 
help.
first psa ever 11/05 - 12.1, age 67
       what a dummy!  now a big advocate for early PSA's
gleason 7 (3&4)
Proton beam therapy - LLUMC -79.2 Gy to prostate
Photon - 45 Gy to pelvis
Lupron - 2 4-month shots
Stage T3b NX M0
bilateral seminal vesicles and extracapsular extension
PSA's on Lupron - .02 range
off Lupron - .7 (4/08),  12.8 (10/08), 16.37 (11/08)
 10/08 - bone scan negative, cat scan negative, 6 core biopsy negative
  11/08 - 6 mo. eligard treatment started
 
recurrence - but don't know where.........


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/15/2008 8:05 PM (GMT -6)   
You need to march yourself into a reputable prostate cancer oncologists office. This doctor had signals months ago that you needed to restart the Lupron sooner. I see you had PBRT at Loma Linda...Are you in California?

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!
 
 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 12/15/2008 8:10 PM (GMT -6)   
I would imagine if I were in your shoes I would want to know where it is located if possible. Perhaps it would not make any difference to treatment but the "it's in there somewhere" would make me feel a little uneasy. Perhaps a prostascint scan (the one fused with a MRI) may show where it is located. There's a bit of information here:
www.prostate-cancer.org/education/staging/Kipper_ProstaScintUpdate.html
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)


FLHW(David E)
Regular Member


Date Joined Nov 2007
Total Posts : 201
   Posted 12/15/2008 8:18 PM (GMT -6)   
If you are looking for advice I would get this thought clearly out of my head:
" so all is left is to sit and wait and sit and wait and sit and wait."

You should as was suggested above immediately find a reputable Oncologist that specializes in PCa.
You should start Lupron, Casodex and perhaps Avodart ASAP (of course after consulting your doctor).
You might want to consider 28 day Lupron as recommended by docotr like Dr. Strum.
Dx'd 2/18/05
PSA 271, bone mets, lymph node involvement
Gleason Score: 7
Current (12-12-08)
PSA: 38.99
Taxotere + Prednisone + Atrasentan
[10th Treatment on December 15th]
Clinical Trial:
http://www.clinicaltrials.gov/ct2/show/NCT00134056?term=prostate+AND+atrasentan&rank=2
Lupron
Personal Blog:
prostatecancerat42.blogspot.com


glass guy
New Member


Date Joined Oct 2008
Total Posts : 18
   Posted 12/15/2008 8:31 PM (GMT -6)   

thank you tony, bill and david.  i am interested in where the prostascint scan is done.  we traveled to loma linda for the proton therapy and we will travel again if necessary.  no tony, we're not in california.  hope medicare and my supplemental would cover it.  sitting and waiting is not an acceptable option.  you can see by the psa rise that there is something explosive going on.  at least the eligard is started.  that shot was about 2 - 3 weeks ago.  side effects are starting to kick in.

i read the article you linked, bill.  where is it done?

thanks


first psa ever 11/05 - 12.1, age 67
       what a dummy!  now a big advocate for early PSA's
gleason 7 (3&4)
Proton beam therapy - LLUMC -79.2 Gy to prostate
Photon - 45 Gy to pelvis
Lupron - 2 4-month shots
Stage T3b NX M0
bilateral seminal vesicles and extracapsular extension
PSA's on Lupron - .02 range
off Lupron - .7 (4/08),  12.8 (10/08), 16.37 (11/08)
 10/08 - bone scan negative, cat scan negative, 6 core biopsy negative
  11/08 - 6 mo. eligard treatment started
 
recurrence - but don't know where.........


Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3240
   Posted 12/15/2008 8:35 PM (GMT -6)   
My doctor told me I had 36 months left so I fired him. Do not accept the word of one doctor. I think yours is a bafoon. We choose to take an active role in our treatment or to sit on the sidelines and let others make the call.
dx:06/03/06
Age at dx: 42 age now 45
Treated for sciatic nerve pain 6 months prior to dx.
Heavy amount of blood in urine Unable to urinate 
Lung x-ray for pnumonia revealed multiple lesions in each lung
P.S.A. at time of dx. 3216.14
Began lupron and casodex
Cat scan showed large mass in the pelvic area affecting the bladder multiple nodules in both lungs and lymph node envolvement.
Bone scan revealed possible bone involvment in the pelvic area
Biopsy 12 of 12 cores positive gleason 3+4=7
P.S.A.s since lupron 2946, 1274, 532, 5.01 1.23, .09
Begining jan 08 psa .o9, .25, .44, .86, .73, 1.34, 1.49. Doubling time is a little over 3 months


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 12/15/2008 8:44 PM (GMT -6)   
There is an MRI procedure done with iron oxide particles that is done in Holland that will identify lymph node involvement. If you have already had radiation I don't think they can radiate the lymph nodes again.
I agree with Tony and the others; see a prostate oncoligist immediately.
The prostate cancer research institute website has a list of qualified prostate oncologists and there are several in the LA area.
JohnT
Diagnosed 10-08 at 63 with PSA of 33
PSA was 4.4 in 1999 and has risen steadily.
Had 13 biopsies and an endorectal MRI, all negative until 10-08. Two cores out of 25 with a gleason 6
2nd opinion with an oncologist said cancer found was insignificant, but suspected larger tumor somewhere.
Doppler ultrasound with target biopsy indicate a large tumor in the transition zone, gleason 7.
Bone and CT scans negative.
PSA3= 43; high normal is 35
Currently evaluating treatment options, surgery is not an option as a high probability of positive margin exists.
John T


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 12/15/2008 8:46 PM (GMT -6)   
Dear GlassGuy, We have had the best doctors that you can think of in the US , and we are still finding our own way. I heartily suggest, MIGHTEDLY, I may add. that you read "ANTI CANCER" By Dr. Servan schreiber....Pete and I just finished it, and I wrote today a post about it. You can definitely keep the cancer at bay. There is so much HOPE in what you can do. Like David E said:" Do not sit and wait". You must be like War Eagle and Living1963. They are so very strong... like most of the guys and their wives on this post. Tony says it for us all the time: ."..Forge ahead and fight this thing." Drink Pomegranite, and eat lots of Broccoli and Blueberries. We can overcome.... and keep posting and coming back. It is strengthening....Diane
Husband Pete
dx Jan 2001 age 67 gleason 4 + 3 PSA 16.5
seed implant and conformal radiation Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06
Fistula operation 2/07 MSK
Many cystoscopies and ER visits with strictures
catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/07
AUS Operation at MSK Sept 8. Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 12/15/2008 8:51 PM (GMT -6)   
Glass Guy,
I am located in Australia so I can't help with location. A quick web check turned up a couple who do both MRI and prostascint scans but I can't see if they fuse the two images to obtain the more accurate imaging.
www.prostascintimaging.com/
www.lexingtondiagnostic.com/index.html
By the way, why the name Glass Guy?
Bill

(Edit) Can't read very well can I? This is contained in the first site.
www.prostascintimaging.com/hcp/pie-sites/
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)

Post Edited (BillyMac) : 12/15/2008 6:59:11 PM (GMT-7)


glass guy
New Member


Date Joined Oct 2008
Total Posts : 18
   Posted 12/15/2008 10:19 PM (GMT -6)   

ok, i've spent the last hour reading on prostascint and as it happens i am having retinal surgery tomorrow at a hospital (about 85 miles from here) that does the procedure.  good time to check out the place.  how do i get a referral or find a doctor???  i know for certain that my current urologist would not give me a referral.  he already suggested i go someplace else when i questioned him about doing a biopsy.  that's the bad thing about being new to an area - you don't know who to go to.

has any of you had the prostascint? 

 

(oh, glass guy because my hobby is stained glass)


first psa ever 11/05 - 12.1, age 67
       what a dummy!  now a big advocate for early PSA's
gleason 7 (3&4)
Proton beam therapy - LLUMC -79.2 Gy to prostate
Photon - 45 Gy to pelvis
Lupron - 2 4-month shots
Stage T3b NX M0
bilateral seminal vesicles and extracapsular extension
PSA's on Lupron - .02 range
off Lupron - .7 (4/08),  12.8 (10/08), 16.37 (11/08)
 10/08 - bone scan negative, cat scan negative, 6 core biopsy negative
  11/08 - 6 mo. eligard treatment started
 
recurrence - but don't know where.........


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 12/15/2008 11:00 PM (GMT -6)   
Hey Glass I hope you take Tony's advice and get yourself a doctor that loves and cares for YOU. There are plenty of options on the table and plenty of us guys who have successfully walked in your shoes. This not the end of the story my friend just a new chapter.
Please continue to share with us as to how your journey unfolds. Always feel free to ask anything or even email us privately if need be.

peace and love
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes 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
cancer in 4 of 6 cores
92%
80%
37%
28%
 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 12/15/2008 11:26 PM (GMT -6)   
Well fancy that Glass Guy. I have been operating a stained glass/leadlight business for the last 22 years. I initially got into it as a hobby. Very quiet at the moment though as housing style fashion has turned ultra modern here.
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)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/16/2008 12:34 AM (GMT -6)   
Glass Guy,
Where do you live? You may have a known oncologist near you.

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!
 
 


glass guy
New Member


Date Joined Oct 2008
Total Posts : 18
   Posted 12/16/2008 8:29 AM (GMT -6)   

hi tony.  we're in tennessee.  i am sending a fax with the biopsy results to loma linda this morning and telling them we are willing to come back to california if they can help.  i also sent a self referral to vanderbilt university in nashville since i saw their name on the prostascint site.  i cannot in my wildest dreams imagine being told to sit and wait and then just sitting and waiting. 

maybe today in the light of day we will be able to locate someone.  we're rural and there is not too much around us.


first psa ever 11/05 - 12.1, age 67
       what a dummy!  now a big advocate for early PSA's
gleason 7 (3&4)
Proton beam therapy - LLUMC -79.2 Gy to prostate
Photon - 45 Gy to pelvis
Lupron - 2 4-month shots
Stage T3b NX M0
bilateral seminal vesicles and extracapsular extension
PSA's on Lupron - .02 range
off Lupron - .7 (4/08),  12.8 (10/08), 16.37 (11/08)
 10/08 - bone scan negative, cat scan negative, 6 core biopsy negative
  11/08 - 6 mo. eligard treatment started
 
recurrence - but don't know where.........


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 12/16/2008 9:29 AM (GMT -6)   
Glass Guy-

If it's feasible, I highly recommend Dr. John Araujo MD, PhD in the Genitourinary Clinic at M.D. Anderson Cancer Center in Houston. When I gave up on my local oncologist, I contacted MDA and asked them to recommend one of their doctors to me. As it turns out, one of our other posters here swears by him and the two of us have convinced a third to see him. His appointment is this Thursday.

M.D.Anderson has been rated the #1 cancer hospital in the U.S. for (I think) 7 years in a row by U.S. News and World Report.

Good luck.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.
9/2008 Interim bone and CT scans show progress vs. scans done before beginning trial. I'm cautiously optimistic. Next scans 10/30/08.
10/2008Bone and CT scans continue to show improvement. Med onc attributes mostly to Taxotere/Prednisone while I believe majority of progress attributable to investigational drug, Sprycel.

Post Edited (Gordy) : 12/16/2008 9:45:42 AM (GMT-7)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/16/2008 11:42 AM (GMT -6)   

Glass,

I concur with Gordy,

if you are willing to travel, MD Anderson is much closer and Grade A.  Right now you need what they offer.  Loma Linda is a specialist in one treatement type.  MD Anderson is a specialist in everything cancer.

 

I wish you the very best!

 

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!
 
 


aspen4
Regular Member


Date Joined Dec 2008
Total Posts : 59
   Posted 12/16/2008 6:23 PM (GMT -6)   
MD Anderson. I've been there and continue to go there every 6 months. I have some lymph node involvement but the Lupron and Casodex have knocked my PSA down to a .3   Earlier this year it was 344.  Expect to outlive this disease.

Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 12/16/2008 6:26 PM (GMT -6)   
Aspen4-

You're the poster to whom I referred.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.
9/2008 Interim bone and CT scans show progress vs. scans done before beginning trial. I'm cautiously optimistic. Next scans 10/30/08.
10/2008Bone and CT scans continue to show improvement. Med onc attributes mostly to Taxotere/Prednisone while I believe majority of progress attributable to investigational drug, Sprycel.


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 12/16/2008 6:50 PM (GMT -6)   
Glass guy,
In addition to combidex, which is a lymph node imaging agent only performed in Holland , there is a new agent, trophex, that should be available in the US with in two weeks. I'm now trying to find out where it is performed and as soon as I get the info I'll passs it on to you. You may want to have your doctor track it down. If they suspect lymph node involvement I would think you would want to have a test that specializes in that rather than prosta-stint.
JohnT
Diagnosed 10-08 at 63 with PSA of 33
PSA was 4.4 in 1999 and has risen steadily.
Had 13 biopsies and an endorectal MRI, all negative until 10-08. Two cores out of 25 with a gleason 6
2nd opinion with an oncologist said cancer found was insignificant, but suspected larger tumor somewhere.
Doppler ultrasound with target biopsy indicate a large tumor in the transition zone, gleason 7.
Bone and CT scans negative.
PSA3= 43; high normal is 35
Currently evaluating treatment options, surgery is not an option as a high probability of positive margin exists.
John T


glass guy
New Member


Date Joined Oct 2008
Total Posts : 18
   Posted 12/16/2008 10:08 PM (GMT -6)   

i even know about md anderson.  just didn't think about it last night.  and it would be closer than california.  meantime i set up an appt with a urology-oncologist at vanderbilt university cancer center.  wish i'd have remembered md anderson before i set up the appt.  does anyone know anything about vanderbilt?

even the screener who took my call at vanderbilt sounded incredulous about my urologist's reaction.


first psa ever 11/05 - 12.1, age 67
       what a dummy!  now a big advocate for early PSA's
gleason 7 (3&4)
Proton beam therapy - LLUMC -79.2 Gy to prostate
Photon - 45 Gy to pelvis
Lupron - 2 4-month shots
Stage T3b NX M0
bilateral seminal vesicles and extracapsular extension
PSA's on Lupron - .02 range
off Lupron - .7 (4/08),  12.8 (10/08), 16.37 (11/08)
 10/08 - bone scan negative, cat scan negative, 6 core biopsy negative
  11/08 - 6 mo. eligard treatment started
 
recurrence - but don't know where.........


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/17/2008 1:27 AM (GMT -6)   
It's OK Glass,
You have time to decide where to go. But you need to get passed the decision and get to that big center. MD Anderson, MSK, Johns Hopkins, Mayo, anyone of them is a great place to start and then transfer to Vandy for pallitive care. Vandy is very reputable, but I would start in Houston if I lived where you do. Again, Loma Linda is a great PBRT facility. But they have a ways to go when you start talking about elite facilities for cancer oncology. (I know I just made a couple friends mad). You are at least on Eligard and that is a good step.

BTW. Why did your urologist switch from Lupron to Eligard when Lupron was effective when tried? I know they are both LHRH agonists, but I find that interesting. Also I don't see Casodex mentioned and as FLHW suggests Proscar. The last one is debatable, but Casodex is effective at reducing the DHT in your body.

Hang in there. There are many things you can do. I am not sure what you urologist was thinking, but he was well against the mainstream if he suggested that what he did was all that could be done. And your signature alone raises questions that are surprising to me. Why he didn't suggest monthly monitoring at .7 is silly to me. And your PSA was climbing rapidly and a bone scan and CT scan was all he did?

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!
 
 

Post Edited (TC-LasVegas) : 12/16/2008 11:33:55 PM (GMT-7)


Rolerbe
Regular Member


Date Joined Dec 2008
Total Posts : 235
   Posted 12/18/2008 11:13 AM (GMT -6)   
Dx: ***hole MD. Tx: New MD, STAT
50 YO
PSA at Dx: 8.2
DaVinci RALP: 10/31/08
Negative margins, no extra-capsular involvement
One nerve spared
No follow-up PSA yet (next week).
 


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 12/19/2008 12:50 PM (GMT -6)   

Glass Guy,

"Beating Prostate Cancer: Hormonal Therapy and Diet" by Dr Charles Snuffy Myers has an excellent section on lymph node detection and treatment. You can get it on Amazon or through Reva Health. You have an excellent chance of cure or at the least control for a number of years if treated correctly. Don't get discouraged.

JohnT


Diagnosed 10-08 at 63 with PSA of 33
PSA was 4.4 in 1999 and has risen steadily.
Had 13 biopsies and an endorectal MRI, all negative until 10-08. Two cores out of 25 with a gleason 6
2nd opinion with an oncologist said cancer found was insignificant, but suspected larger tumor somewhere.
Doppler ultrasound with target biopsy indicate a large tumor in the transition zone, gleason 7.
Bone and CT scans negative.
PSA3= 43; high normal is 35
Currently evaluating treatment options, surgery is not an option as a high probability of positive margin exists.
John T


jerryg
Regular Member


Date Joined Feb 2007
Total Posts : 30
   Posted 12/19/2008 1:59 PM (GMT -6)   

Glass Guy,

   This article came out on Dec. 15, 2008.  It caught my attention because of a neighbor who has had much the same experience as you have had.  A 6 core only sample is pretty unusal to hear about.  Even a 12 core sample is like finding a needle in a hay stack.  'Prostate Cancer Discovered In 40% of Men Who Test Negative For The Disease' is the article title and it may be worth persuing. Hope this helps.

http://www.cnbc.com/id/28241818/site/14081545

Jerry
Prostate Cancer diagnosed Dec. 18, 2006
Biopsy 12/13/2006 Gleason score = 3+5=8
RRP Jan. 5, 2007
Pathology - negative margins from succesful surgery
10 mg Cilias M_W_F for 8 weeks
Almost no leakage after 5 weeks
Used Vacurect pump for 4 weeks before useable erection.
Presently using injections - PGE and Trimix caused really bad pain.
Now using Bimix - Bingo, good times are back.
Using very little Bimix and 50 mg Viagra-best combo
1-yr PSA .02
PSA July 2008 - 0.08.
PSA Aug. 2008 - 0.10
Started salvage Proton radiation treatments Sept 2008 at UFPTI.
35 treatments ended Oct. 21st.  Ending PSA .20
Minor uniary and rectal problems cleared up after a month.


aspen4
Regular Member


Date Joined Dec 2008
Total Posts : 59
   Posted 12/20/2008 8:33 PM (GMT -6)   

Gordy

I wish you and all men on this site the very best. How would you rate your experience at MD Anderson. Just curious if your experience of the place agrees with mine.

Be Well

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