Leave no stone unturned

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goody5
Regular Member


Date Joined Mar 2008
Total Posts : 66
   Posted 4/14/2008 11:48 AM (GMT -7)   
I feel blessed that I found this board.  I have learned so much and was prepared when my uncle's visit with the doctor on Friday did not go as well as we had hoped. My first stop after our news was here. THANK YOU so much for the immediate response!!!
I believe no matter what there is hope and ONE doctor cannot take that away. Our family has had some good cries BUT we are moving swiftly to cover all our options.
So, if you are newly diagnosed (as we our) do your research and come here if you have any questions.  I have and it has helped us tremendously. 
What we have accomplished in since Friday:
FRIDAY Urologist appoitment: Doctor says aggressive cancer and only choice is hormone therapy (casodex and Eligard) because of node involvement (1 that we know of but Dr. said STATISTICS show there probably is more).
 
Friday afternoon I post here and by evening I get information showing me otherwise (Thank You, Thank YOU).
 
Saturday and Sunday is spent researching and emailing to my cousin to review. Cousin emailed Bob Marchini (wrote You Can Beat Prostate Cancer) he wrote back an encouraging email.
  
Monday Morning: We have an appoitment at University of Penn next Monday.  They said hold off on Eligard. If they want him to have they will give it to him then.  All records have been sent to Fox Chase Cancer Center. They will get back within 48 hour to let us know if we should see oncologist or radiologist or both.
Tomorrow we are contacting Johns Hopkins and Loma Linda about Proton.  Penn's new machine will not be used until 2009. Penn said if he is a canidate they will work with them
 
In the end, if we come up we the same hormone treatment I know we left no stone unturned.   
Cheryl
Father diagnosed 13 years ago @ age 63
Watchful waiting until PSA jumped from 6 to 10
Cancer found in 1 core
Gleason score 6
Seeds implanted
PSA has been low since (don't know exact numbers)
 
Uncle (mother's brother) age 68
PSA jump from 2 to 8 in 18 months (2/08)
DRE was normal (2/08)
Biopsy (3/08) Cancer found
Bone scan (clear) 
CAT scan showed 1 enlarged lymph node
Fine Needle Lymph Biopsy (Positive)
Gleason Score (7) 4 + 3
9 of 12 cores positive
 
 


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 4/14/2008 1:42 PM (GMT -7)   
You guys are on the right track! Please keep us posted!!  I'm very interested in what the doctor's have to say. 

Father's Information
DX July 15, 2007
Age 62 (now 63)
PSA 5.5
Original Gleason 3+4=7 
Post Surgery Gleason- 4+3=7
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin
One positive node
Bone Scan/CT Negative (Sept. 10, 2007)
T3a N1 M0
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07
Lupron beg. Dec 03, 2007 2 yr
Radiation started March 03, 2008 8 weeks 5x a week
5 weeks of radiation down!!!
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/14/2008 2:30 PM (GMT -7)   
Goody5 said...
My dad had prostate cancer.  My brother is 46 and his Primary doctor would not do DRE exam on him because he is under 50. He went to a urologist for another reason and when he saw his history he asked him "When was your last DRE". My brother's reply " Never had one" Urologist " Well, your getting one now!" tongue   Thank Goodness   BTW, I am 51 
I saw this on another post.  I going to be blount.  Your brothers primary doctor needs to be replaced is he knew your family history with PC.  This is basic rule of thumb if there is immediate family history to do PSA and DRE at 45.  I believe that ALL men should be tested at 40.  You can see my numbers and understand why I feel that way.  You're right, thank goodness he had the other problem. 
 
Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology: Gleason 4+3=7, positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (1/08): <0.1
I will continue HT until May '09. 
Years in Remission (3/23/07): 1
Visit my Journey at:
 
STAY POSITIVE!
 
Prostate Cancer Forum Moderator


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 4/14/2008 2:55 PM (GMT -7)   
I can't tell you how many times I've said, and posted, that the patient (and/or family) has to be proactive and take charge of the process. Nobody cares as much about your outcome as you do.

And, also as I've posted many times, Dr. Strum says "MD does not stand for medical deity".

-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.


goody5
Regular Member


Date Joined Mar 2008
Total Posts : 66
   Posted 4/14/2008 3:25 PM (GMT -7)   
Tony said "Your brothers primary doctor needs to be replaced is he knew your family history with PC". 
 
You are so right. My brother just said the other day he thinks he's a QUACK!
Cheryl
Father diagnosed 13 years ago @ age 63
Watchful waiting until PSA jumped from 6 to 10
Cancer found in 1 core
Gleason score 6
Seeds implanted
PSA has been low since (don't know exact numbers)
 
Uncle (mother's brother) age 68
PSA jump from 2 to 8 in 18 months (2/08)
DRE was normal (2/08)
Biopsy (3/08) Cancer found
Bone scan (clear) 
CAT scan showed 1 enlarged lymph node
Fine Needle Lymph Biopsy (Positive)
Gleason Score (7) 4 + 3
9 of 12 cores positive
 
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/14/2008 5:35 PM (GMT -7)   

  tongue   Dear Cheryl,

 

Thank you for this powerful posting!!!    yeah   The forums are intended for offering mutual personal support and you've just proven how powerful the sharing is.!!!

 

Caring Enough to Share….. that’s what  HealingWell   is all about

 

KNOWLEDGE IS POWER... and POWER conquers fear

 

 

  smurf Thank you HealingWell and founder Mr. Peter Waite…

 

Please remember you can order books from HealingWell’s Book Store… this helps support our forum.

 

v           BOOKS... Recommended by Forum Members

 

WellnessBooks.com (HW's official bookstore)

             Help ~ HealingWell ~ Help "All of Us"

 

 

  bluebird ~  Moderator for Prostate Cancer Forum


goody5
Regular Member


Date Joined Mar 2008
Total Posts : 66
   Posted 4/15/2008 4:11 AM (GMT -7)   
The experiences at this forum helped us make good progress in a short time. I hope our experience will do the same for someone else.
Cheryl
Father diagnosed 13 years ago @ age 63
Watchful waiting until PSA jumped from 6 to 10
Cancer found in 1 core
Gleason score 6
Seeds implanted
PSA has been low since (don't know exact numbers)
 
Uncle (mother's brother) age 68
PSA jump from 2 to 8 in 18 months (2/08)
DRE was normal (2/08)
Biopsy (3/08) Cancer found
Bone scan (clear) 
CAT scan showed 1 enlarged lymph node
Fine Needle Lymph Biopsy (Positive)
Gleason Score (7) 4 + 3
9 of 12 cores positive
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/15/2008 7:08 AM (GMT -7)   
It already has...And you will do it again. Thank you.

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology: Gleason 4+3=7, positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (1/08): <0.1
I will continue HT until May '09. 
Years in Remission (3/23/07): 1
Visit my Journey at:
 
STAY POSITIVE!
 
Prostate Cancer Forum Moderator

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