Keeping your head

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Oncas
Regular Member


Date Joined Jan 2009
Total Posts : 390
   Posted 4/29/2009 6:04 PM (GMT -6)   
Had six week RRP follow up today with urologist. Positive margins and some node involvement in path report had me braced for more of seemingly endless stream of negative news and i wasn't disappointed.
PSA .6 and uro's demeanor was not encouraging. At first he discussed the possibility of a "prostascint test" to determine if the PSA was being generated by a local or systemic presence. But as the discussion wore on he suggested that I wait 4 weeks, do another PSA test and if the climb continues immediately begin ADT. Because of my high Gleason and the size of my tumor he seemed somewhat less than optimistic about the possible effectiveness of the ADT. I asked a lot of questions but I left in a funk with of course several unasked.
Don't the presence of positive margins suggest that some residual cancer was left behind locally and couldn't this residual cancer be responsible for the PSA?
Anyway, I refuse to tone down my expectations and I expect to hang tough for a long time. I am searching for a good medical oncologist as I feel that I need more educated reinforcement. For tonight I'm sitting back with a glass of good Chianti and taking a break from the war.
Sincerely hope that all of you are well and staying positive.
 
Oncas (Jim)

Age 61
Northeastern Penna.
11/08/08 annual checkup (3 yrs late) PSA 8.04 from previously 2.7 in !!/05
1/23/09 biopsy 12 cores positive, 10 cores Gleason 7, 2 cores Gleason 8 70% tumor
2/06/09 cat +bone scans clean ..
3/26/09 RRP surgery Post op path .. upgraded to Gleason 9 (5+4), seminal vesicles involved, several positive margins, 2 of 9 lymph nodes positive.
4/4/09 Dr. advising wait for significant rise in PSA and initate hormonal treatment.


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 4/29/2009 6:21 PM (GMT -6)   
Oncas,
I like your attitude and you are on the right track in seeking a specialist oncologist. I also like the idea of an attempt to locate the source of the PSA with rigourous scanning........every bit of information helps with the next step. It is simply a fact of life that most urologists are not up with the intricacies and latest developments in treating Pca. This is not to suggest they are not very good at what they do but the nitty-gritty of PCa is not their field of expertise. If you haven't done so yet check out the detailed experiences of the journey of the higher Gleason fellas on the 'Yananow' site :

www.yananow.net/Chart-Gleasonu6.htm#8

Enjoy the Chianti turn
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)
PSA February 09 <0.01


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/29/2009 6:55 PM (GMT -6)   
Jim, sorry your visit didn't get any better for you, and my ex-bosses fave saying was "it is what it is". Sounds like you are taking the bull by the horn, and you should. While all that is going on, drink that wine, do what you like to do, enjoy living. Your story has a long way to go, and a lot of paths out there, keep on keeping on as they use to say. My best to you brother, make the very best of a potential bad situation, who knows what twists and turns may lay ahead for you. With you all the way.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 6 month on 5/9
 
 


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 4/29/2009 9:11 PM (GMT -6)   

Jim,

Sorry for the bad news. If you have lymph node involvement then you can be fairly certain that the reoccurance is not local. Don't waste your time on another local treatment. As soon as this was discovered why didn't your doc put you hormone therapy? Best advice is to go on ATD3 as soon as possible. Find a good prostate oncologist and follow his advice.

JohnT


64 years old.

I had an initial PSA test in 1999 of 4.4. PSA increased every 6 months reaching 40 in 5-08. PSA free ranged from 16% to 10%. Over this time period I had a total of 13 biopsies and an endorectal MRIS all negative and have seen doctors at Long Beach, UCLA, UCSF and UCI. DX has always been BPH and continue to get biopsies every year.

In 10-08 I had a 25 core biopsy that showed 2 cores positive, gleason 6 at less than 5%. Surgery was recommended and I was in the process of interviewing surgeons when my wife's oncologist recommended I get a 2nd opinion from a prostate oncologist.

I saw Dr Sholtz, in Marina Del Rey, and he said that the path reports indicated no tumor, but indolant cancer clusters that didn't need any treatment. He was concerned that my PSA history indicated that I had a large amount of PC somewhere that had yet to be uncovered and put me through several more tests.

A color doppler targeted biopsy in 11-08 found a large tumor in the transition zone, gleason 6 and 7. Because of my high PSA Dr. suspected lymph node involvement, 30% chance, and sent me to Holland for a Combidex MRI, even though bone and CT scans were clear.

Combidex MRI showed clear lymph nodes and a 2,5 cm tumor in the anterior. I was his 1st patient to come up clear on the Combidex which has a 96% accuracy,

I've been on a no meat and dairy diet since 12-08 and PSA reduce to 30 while I awaited the Combidex MRI.

The location of the tumor in the anterior apex next to the urethea makes a good surgical margin very unlikely. Currently on Casodex and Proscar for 8 weeks to shrink my 60 mm prostate. Treatment will be seeds followed by 5 weeks of IMRT while continuing on Casodex and Proscar. So far no side affects from the Casodex.

As of April 10 and 7 weeks on Casodex and Proscar PSA has gone from 30 to 0.62 and protate from 60mm to 32mm. Very minor side affects. Doc says all this indicates tumor is not aggessive

Awaiting schedule for seed impants

 


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 5/2/2009 8:18 PM (GMT -6)   
I to am sorry to hear the news my friend. I would agree with a second opinion, however in my limited opinion I believe time is of the essence. I to think ADTs is the protocol but hey I am no doctor. I to had positive lymph nodes and had 44 IMRT's and now have been on ADT3 for two years. Stay in touch with me, I would love to follow how you are doing.

peace and love
dale
My PSA at diagnosis was 16.3
age 47 (current)
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
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%
 


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 5/3/2009 10:24 AM (GMT -6)   
Jim-
Sorry to hear that the news wasn't better and that your dr. wasn't more encouraging. I am very surprised regarding his lack of optimism regarding ADT. I would definitely find a second and third opinion. There are many men that have had lymph node involvement that have done extremely well for long periods of time. My father had a lymph node involved and we decided on HT and salvage radiation. His PSA came back undetectable after surgery (.07 and then down to .05) and we decided to take the attitude of how do we know that they didn't get it all or if there is any left, why wouldn't it be in the prostate area! and why wouldn't radiation work. One of the questions that always comes to mind, is that if you wouldn't have had the surgery and opted for radiation, you would have never known there were a couple of positive nodes right?! Now, you know, but that just means that you are better equiped for the next step. We found Dr. Snuffy Meyer's book to be extremely encouraging and if you haven't read it, I would definitely encourage you to do so.
On another note, my husband is a dr and called a radiation oncologist friend for an opinion regarding my father's case and he shared that his father in law had local lymph node involvement and underwent radiation (I can't remember if he did ADt, but I am assuming so), anyways, it was 14 years ago. He is doing great today and I hope and believe that this can be the case for both you and my father. Stay positive and keep us posted!! All the best to you!
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


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 5/3/2009 10:32 AM (GMT -6)   
P.S. I was under the impression that regardless of post op PSA if there is a node involved, immediate ADT is the standard and has shown the best results as opposed to waiting. On another note, a lot of Dr.'s wait 12 weeks for the first post op PSA, so I will hope and pray that in 4 weeks, your PSA will go down. (My father's did as you can see from my signature) There is hope and there are options!!!

P.S. Chianti has always been one of my favorites :) Hope it was fantastic!
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


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/4/2009 12:53 PM (GMT -6)   
Jim,
You may wish to consult a radiation oncologist anyway. No harm is asking his advice. IMRT with pelvic node and prostate bed treatment has indeed kept PSA lower over time in such cases. It is still being debated on the mortality rates but we haven't enough data for it yet. I chose that rout with ADT and I am happy to say two years later I am doing well.

Chianti is near the top of my list as well. Anything red usually for me will be good.

Peace,

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 5/5/2009 7:10 AM (GMT -6)   
Hang in there Jim.  We all wish for that good report each and every time one of us goes for the next doctors visit and we feel for anyone who doesn't receive the news they would like to get.  Thanks for sharing with us so we can follow you down whatever path is laid before you.  Like some others have said, I would be headed for a good oncologist who specializes in prostate cancer.  There are lots of options and while prostate cancer seems to be slow growing, why wait!  Please keep us posted and know that you have brothers and sisters who are walking the same or similar paths and regardless of what stage or prognosis we have individually, we can support each other as we move along the path to healing.  God Bless!  David

Age 55
Diagnosed Dec 2007 during annual routine physical
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 positive with 2 marginal
Gleason 3 + 3 = 6
RRP 4 Feb 08
Both nerves spared
Good pathology - no margins - all encapsulated - Gleason 4 + 3 = 7
Catheter out Feb 13 - wore pad for couple of days - pad free Feb 16
Great wife and family who take very good care of me


Pelahatchie
Regular Member


Date Joined Jul 2007
Total Posts : 86
   Posted 5/5/2009 10:13 AM (GMT -6)   
Hang in there my friend and I agree with Vegas on not ruling out radiation.  Evidence continues to build that in cases like yours that the radiation may not cure you but can still have a very positive impact on your survival, especially with high gleason scores.  They don't understand the reasons at this time but when you are in our position who cares if it gets you to the finish line.

Age 45 at DX
 
DX 8/05 Gleason 5, Mayo clinic Second Opinion Gleason 6, PSA 2.8
 
Da Vinci surgery Dr. Dasari, Centennial Nashville 9/24/05
 
Pathology Report Gleason 6, 15 % on left side only very near to the edge of capsule, too close to call on margins, doc's said to watch it very closely, final decision T2A
 
PSA's have basically ranged from <.04 to .05 for two years.
 
no E.D. and no Incontinence, feel very blessed
 
PSA Nov 07 = .06
 
PSA Dec 10th 07 =.07
 
PSA Jan 4th 2008= .1
 
Started Guided IMRT on January 7th, 2008 to treat prostate bed and lymph nodes, completed on March 6th, 2008
 
PSA April 18th 2008 =.03
 
PSA August 18th 2008 = .01 or less, test only goes down to .01

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