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mlbsm
Regular Member


Date Joined Mar 2008
Total Posts : 85
   Posted 4/6/2008 6:29 AM (GMT -7)   
Like most folks, when I was diagnosed with PC, I went into high gear to try and find out what was going on, and what the best way was for me to get rid of it.

I was totally green, no, ignorant.

My search eventually led me to RRP and internally, I was kicking and screaming all the way.

Prior to that decision, I wanted Da vinci and went about searching.

The Cancer Treatment Centers of America was one of those groups I encountered and is now the reason for this post.

Right or wrong, I concluded that if I were to opt to have surgery, especially Da Vinci, the Cancer Centers of America would wish me well, but I was on my own since they did not participate in that particular form of treatment. They literally told me that.

I had the very distinct feeling when talking to the CTCOA people that my doorbell had rung and two Jehovah Witnesses were standing there. Regardless of how religious one is, that is not a welcome sight unless you happen to be another Witness.

I ask only because I was told that this board does not advocate one treatment over another and we seem to have a strong advocate now on board.

Am I wrong?
DIAG. 2/08
DRE POSITIVE
PSA 6.8
CONTAINED, LEFT SIDE, GLEASON 9
LUPRON, (3 MO.) 2/28
SURG, SCHED. 3/26/08
RRP, 3/26, HOME 3/31
BIOPSY REPORT:
GLEASON SCORE, 3+4
LEFT NERVE BUNDLE REMOVED, RIGHT RETAINED.
LEFT AND RIGHT LYMPH NODES NEGATIVE FOR MALIGNANCY.
BLADDER NECK , NEGATIVE FOR MALIGNANCY.
TUMOR CONFINED TO THE PROSTATE, INKED EXTERNAL SURFACE FREE OF INVOLVEMENT.
BILATERAL VAS DEFERENS, NEGATIVE FOR MAILIGNANCY.
BILATERAL SEMINAL VESICALS, NEGATIVE FOR MALIGNANCY.

WAITING NOW FOR 1ST POST OPERATIVE PSA, WHICH WILL DETERMINE VERY LITTLE DUE TO LUPRON INJECTION.

BASICALLY, THE "WINDOW OF OPPORTUNITY" THE PHYSICIAN WAS SEEKING WAS REACHED AND HE GOT IT ALL.


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 4/6/2008 7:01 AM (GMT -7)   
Huh? I am completely missng the question. Repeat please :>) Some of us (me!) need a the KISS version :>0

Swim
 


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 4/6/2008 7:14 AM (GMT -7)   
good morning and welcome. I to am not sure what the question was. When I was diagnosed back in June of last year I also went into high gear for research. I went along with my local doctors and decided on the surgery to remove the prostate only to find out it had spread to the lymph nodes. Then I made the decision to go to The Cancer Treatment Center of America, and that was the best decision of my life. The reason I say that is because they treat the whole person, emotionally, physically, spiritually, and dietary. I walked away with hope. Sure there are some surgeries that are less invasive and a shorter healing time, and I am sure there are some forms of radiation that are less invasive as well, in the end if the place of treatment does not offer you hope, then to me you are at the wrong place. Hope is our constant in this battle, it is why we are all here on this forum. With hope we have the ability to live another day, see another sun set, reach out to others in need. Please keep us posted as to how your battle goes. We CARE
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


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 4/6/2008 7:25 AM (GMT -7)   
 
i am 48 and was diagnosed with pc last thursday (psa 3.82 gc 3+4).  i meet with the doctor next week to discuss options.  i am scared but gaining acceptance each day.  i may opt for  the radiation beam thearapy but not sure yet.  i have to wait and hear what the doctor says.

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 4/6/2008 7:29 AM (GMT -7)   
welcome in Rob2 sounds like you might have caught this early enough. What hospitals have you checked out?
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


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 4/6/2008 7:33 AM (GMT -7)   
 
 
i am forturnate that i live in houston.  my urologist is associated with methodist hospital.   i will talk to him about md anderson or staying with him.  if i go the radiation route, the doctor's group have a complex not far from my house that i can have the radiation treatment.   my brother had prostate cancer several years ago and had the seed implant.  he went to seattle.  i believe seattle prostate are pioneers in the seed.  he is cancer free now.

mlbsm
Regular Member


Date Joined Mar 2008
Total Posts : 85
   Posted 4/6/2008 7:47 AM (GMT -7)   
Sorry for the confusion Swimom, but I was asking if the CTCOA is being run by a radical fringe group of
the religious right who are always seeking active converts to the one true way of thinking.

Billy
DIAG. 2/08
DRE POSITIVE
PSA 6.8
CONTAINED, LEFT SIDE, GLEASON 9
LUPRON, (3 MO.) 2/28
SURG, SCHED. 3/26/08
RRP, 3/26, HOME 3/31
BIOPSY REPORT:
GLEASON SCORE, 3+4
LEFT NERVE BUNDLE REMOVED, RIGHT RETAINED.
LEFT AND RIGHT LYMPH NODES NEGATIVE FOR MALIGNANCY.
BLADDER NECK , NEGATIVE FOR MALIGNANCY.
TUMOR CONFINED TO THE PROSTATE, INKED EXTERNAL SURFACE FREE OF INVOLVEMENT.
BILATERAL VAS DEFERENS, NEGATIVE FOR MAILIGNANCY.
BILATERAL SEMINAL VESICALS, NEGATIVE FOR MALIGNANCY.

WAITING NOW FOR 1ST POST OPERATIVE PSA, WHICH WILL DETERMINE VERY LITTLE DUE TO LUPRON INJECTION.

BASICALLY, THE "WINDOW OF OPPORTUNITY" THE PHYSICIAN WAS SEEKING WAS REACHED AND HE GOT IT ALL.


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 4/6/2008 7:51 AM (GMT -7)   
my experience with CTCA has been positive. They do believe in spirituality to aide in the healing process, however I will say this they do not seem to be involved with any particular religion. I hope you give them consideration.
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


mlbsm
Regular Member


Date Joined Mar 2008
Total Posts : 85
   Posted 4/6/2008 8:18 AM (GMT -7)   
swimom,

Need i say more?
DIAG. 2/08
DRE POSITIVE
PSA 6.8
CONTAINED, LEFT SIDE, GLEASON 9
LUPRON, (3 MO.) 2/28
SURG, SCHED. 3/26/08
RRP, 3/26, HOME 3/31
BIOPSY REPORT:
GLEASON SCORE, 3+4
LEFT NERVE BUNDLE REMOVED, RIGHT RETAINED.
LEFT AND RIGHT LYMPH NODES NEGATIVE FOR MALIGNANCY.
BLADDER NECK , NEGATIVE FOR MALIGNANCY.
TUMOR CONFINED TO THE PROSTATE, INKED EXTERNAL SURFACE FREE OF INVOLVEMENT.
BILATERAL VAS DEFERENS, NEGATIVE FOR MAILIGNANCY.
BILATERAL SEMINAL VESICALS, NEGATIVE FOR MALIGNANCY.

WAITING NOW FOR 1ST POST OPERATIVE PSA, WHICH WILL DETERMINE VERY LITTLE DUE TO LUPRON INJECTION.

BASICALLY, THE "WINDOW OF OPPORTUNITY" THE PHYSICIAN WAS SEEKING WAS REACHED AND HE GOT IT ALL.


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 4/6/2008 10:36 AM (GMT -7)   
mlbsm,

Need I say more?? CTOA is anything but radical. It's a licensed medical facility, operated by licensed professionals with a twist of faith and alternative treatments. Nothing radical about that. Ignorance...ooops, I mean being in a place unfamiliar usually does frighten people. I find your opinion pretty radical but hey, we live in a free society.

Swim
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/6/2008 10:42 AM (GMT -7)   
Let me try to simplify this.
open RRP vs. Robotic LRP. Radiation Vs. Surgery. Spiritual vs. Not.

RRP and LRP acheive the same result. The cancer is cut out and you get a difinitive post operative pathology. Can't miss either way, but the procedures are arguable for which is better. I wouldn't 2nd guess at this point.

Radiation vs surgery is debatable to no end. For me, surgery was the best way to go so that I would get that post op pathology and not have to deal with PSA bounce. PSA bounce is in radiation therapy a PSA test somewhere down the road that shows a rise. You spend the next 3 to 6 months wondering is your cancer is spreading. The good side of radiation is that you skip, initially at least, the incontinance and ED issues. But after treatment you have to hope its working. In my case it would not have worked alone and I would have delayed getting necessary adjuvant therapies. But I will tell you that many have done very well with radiation as the primary therapy.

Spitual vs. Not. This is different for each of us. A decesion that transcends cancer and treatment. If your center uses spirituality as a means to deal with the process of treatment, they should also be telling you that it's meant to also say that you should try to get help in dealing with the psycological effects of a very serious illness. You can do your own interpretations but it is well intended.

Were you wrong? No. You did what you did based on the education you had at the time. There is no use for Monday morning quarterbacking. I consider the things I did done. I am a spritual guy, but I also sought group help and found it here. I have no regrets.

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


mlbsm
Regular Member


Date Joined Mar 2008
Total Posts : 85
   Posted 4/6/2008 10:53 AM (GMT -7)   
Swimom,

Sorry I appear too radical to you,
I withdraw from HW.

Billy
DIAG. 2/08
DRE POSITIVE
PSA 6.8
CONTAINED, LEFT SIDE, GLEASON 9
LUPRON, (3 MO.) 2/28
SURG, SCHED. 3/26/08
RRP, 3/26, HOME 3/31
BIOPSY REPORT:
GLEASON SCORE, 3+4
LEFT NERVE BUNDLE REMOVED, RIGHT RETAINED.
LEFT AND RIGHT LYMPH NODES NEGATIVE FOR MALIGNANCY.
BLADDER NECK , NEGATIVE FOR MALIGNANCY.
TUMOR CONFINED TO THE PROSTATE, INKED EXTERNAL SURFACE FREE OF INVOLVEMENT.
BILATERAL VAS DEFERENS, NEGATIVE FOR MAILIGNANCY.
BILATERAL SEMINAL VESICALS, NEGATIVE FOR MALIGNANCY.

WAITING NOW FOR 1ST POST OPERATIVE PSA, WHICH WILL DETERMINE VERY LITTLE DUE TO LUPRON INJECTION.

BASICALLY, THE "WINDOW OF OPPORTUNITY" THE PHYSICIAN WAS SEEKING WAS REACHED AND HE GOT IT ALL.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/6/2008 11:31 AM (GMT -7)   
mlbsm said...

I was totally green, no, ignorant.

:-(, this appears to be simple miscommunication.
Easy guys. Billy ~ mlbsm, you are absolutely a value to us here and I would hope you stay. HW will have many points of view because we are NOT drawn to specific treatments but rather a place for patients to talk to patients. And that means ALL variety of thoughts and opinions. You and ML will be supported here regardless of Faith or procedure. Please reconsider your withdrawing because you have been met with a different interpretation. Swim has helped many, but you can take it or leave anyones opinion. Religion is not necessary, nor promoted, to be a member here. In a gentler response, CTCOA is a reputable center. If you are successfully cured, you did very well.

Tony

Post Edited (TC-LasVegas) : 4/6/2008 12:36:57 PM (GMT-6)


Frank1205
Regular Member


Date Joined Feb 2008
Total Posts : 308
   Posted 4/6/2008 12:05 PM (GMT -7)   
Hi Folks,

What just happened? Swim you have been a great help to me and you Billy we share a special date and building friendship. I think two passionate people just misunderstood each other. I am a little sensitive today myslef. I have cancer and I want it gone. This site provides a medium equal to none I have seen. I come here for answers. Now medical but maybe someday spirtual. My choice.

Billy I hope you change your mind and stay on this site. I will continue to email you and stuff regardless. I would hope that you and swimom can communicate on email and come to terms. There must be room for all on this site otherwise it will fail.

Frank
Frank S.
diagnosed 01-08-08 53 years old 
DRE normal
High PSA for 5 or more years
2004 Biospy negative
2008 Biopsy positive (01-08-08)
10 cores, 1 positive and at 1% of that one core
Current PSA   6
Bone and Ct scans negative
Staged at T1C
Gleason 3+3 = 6
Robotic Da Vinci performed March 27th, 2008
University of Chicago
5 hour surgery , 3 hour recovery
Unexpected Cardiac issues appear and disappear?
Hospital stay 30 hours
Catheter out in 7 days  expected leakage
Erectile funtion back on line 9 days
 
Post Pathology T2C, Gleason 7, 10 % of both portions of prostate, Seminal vessels clear, fat tissue clear,Tumor on bottom of prostate distal, 1 positve margin distal at urethra, going to meet with oncologist to discuss treatment options if any at this time.
 


Johnny Canuck
Regular Member


Date Joined Jan 2008
Total Posts : 88
   Posted 4/6/2008 12:23 PM (GMT -7)   
rob2 said...
 
i am 48 and was diagnosed with pc last thursday (psa 3.82 gc 3+4).  i meet with the doctor next week to discuss options.  i am scared but gaining acceptance each day.  i may opt for  the radiation beam thearapy but not sure yet.  i have to wait and hear what the doctor says.
Rather than weigh in on the religious controversy...to which I would simply say "chacun a son gout"...I'd just like to impress upon Rob2 to investigate brachytherapy if he is, indeed, a good candidate. I'm a month and a half in, and have no regrets as to my choice.

Age: 54
Gleason Score: 3+3=6
PSA: 3.33
Biopsy:7/8 Positive
Stage: "Bulky" T1c
Prostate Size: 27cc
 
Diagnosed: December 05, 2007
Brachytherapy: on February 26, 2008
  68 seeds, (Iodine 125). 
 
 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 4/6/2008 2:12 PM (GMT -7)   
Don't make any appologies for me, Tony. I don't believe I said anything worth being sorry over.

Swim
 


DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 4/6/2008 5:20 PM (GMT -7)   

Forgive my ignorance, but what role does Cancer Treatment Centers of America play?  I am not famililar with the organization.

I have had no contact with any such organization and am not sure why I would.

Unless a person was forced to use them or some other faciliity, would it matter which surgical options they do or do not use?

If they are some sort of faith-based group, then so be it.  Folks who are drawn to such an environment might find it appealing.  Others would not.  Why is either perspective an issue?

Sorry if I am missing the point here.

DanMan Bob


Danman Bob
Age 57
Nerve-sparing, open prostate surgery November 13, 2007
Gleason score 9, PSA 14
Biopsy result - 9 of 12 sticks showed cancer
Despite high Gleason score, cancer was confined to the prostate
Possible post-surgery radiation therapy...decision likely in late April 2008, depending upon PSA at that time
Unrelated surgery January 2008 delayed incontinence recovery, which is now showing good signs of improvement (fraction of a pad a day as of March 2008)
Began using Viagra 3 times a week December 2007 to stimulate blood flow
Began using Osbon Erec-Aid Esteem manual pump for therapy mid-February 2008
Will probably begin using bimix injections in addition to Viagra and pump in May 2008


Jayadub
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 4/6/2008 5:37 PM (GMT -7)   
I'm missing the point as well. Loma Linda makes no bones about being a 7th Day Adventist facility but the proselytising is so minimal that except for the cross on the exterior of the hospital, you might miss it. Their holistic approach to "Making Man Whole" is what makes the treatment experience so great. At no time did I feel like Believe in Us or we won't treat you.

I am also confused as to who the "advocate" is?!?!?

54 years old

PSA 5.6 on 3/20/07

DRE: Negative

Biopsy on 4/20/07 

Results 4/25/07:

3 out of 12 cores positive, 2 on the right lobe with 5% adenocarcinoma Gleason 3+3, 1 on the left lobe 10% adenocarcinoma Gleason 3+4, overall Gleason graded 7 Cancer T1C.  After web research discovered Proton Beam Therapy and called Loma Linda. Completed consultation with Dr. Luu on 7/5/2007 and started treatment at Loma Linda on 7/26/07. Completed treatment 44 on 9/28/07. 0 treatments remain. Side Effects remain minimal. 1st PSA result on January 28th is 1.1.


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 4/6/2008 6:18 PM (GMT -7)   
WOW this has been an interesting thread. I personally love CTCA, however any facility that gets the desired results is the right one. I agree with Tony we should not 2nd guess our choices after the fact. We can however continue to gain knowledge of new procedures, and continue to find hope thru support such as HW. I hope the gentleman that was offended decides to come back. We need everyone to make the group effective.
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


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/6/2008 10:06 PM (GMT -7)   
Hi Swim,
I didn't see a need for apologies. Just Hoping for Peace.

Hi Billy,
IMHO, I think CTCA is awesome by including the complete approach. It says clearly on their site "whether religous, spiritual or not" they offer their medical services. Actually, if you look at every major cancer center in the US you will find an arm dedicated to lending spiritual help and likely a chaplain. These days they call them "meditation supporters" to be politically correct. But I've seen them at every major cancer center I have visited. CTCA does have a very strong spiritual support mechanism that is taylored around ones beliefs. It's an optional service, not a required one. Free will is an option we all have in life.

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


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 4/7/2008 6:53 PM (GMT -7)   
johnny wrote to rob2: Rather than weigh in on the religious controversy...to which I would simply say "chacun a son gout"...I'd just like to impress upon Rob2 to investigate brachytherapy if he is, indeed, a good candidate. I'm a month and a half in, and have no regrets as to my choice.

--------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------


thanks johnny. i will consider the seed implants. i am developing the list of questions for my doctor now. also, did you go with first doctor or seek out a second opinion.

rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 4/8/2008 4:05 PM (GMT -7)   
i go to the doctor on thursday to discuss my options. after the decision is made, how long does it take to start treatment. i guess if surgery is the option, it is finding the right one. if anyone had surgery, did you talk to more than one surgeon?
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