From Loma Linda to Surgery

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same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 7/20/2007 8:12 PM (GMT -7)   

     Please excuse my lengthy post.  My plans changed drastically this week culminating with my phoning to get scheduled for Robotic Laparoscopic surgery on August 28.

 

     What led to my decision was an undeniable series of red flags:

 

1.      The first pink flag was when I read that the newer Proton treatment facilities were less likely to take somebody with a high Gleason because they wanted to build a success record.  I pretty much discounted this considering that an internet post is not too close to Gospel.  Nonetheless there was an absence of posts challenging this statement.  The inference stayed with me.

2.      The second red flag was when I spoke with the Loma Linda nurse who said  that she (or her counter parts) is the only medical person one speaks with prior to the initial Physician consult.  I asked her what basis I could move up from my Sept 12 consult if they had a cancellation.  She said if it were short notice they would contact people close by.  I pointed out that I had my biopsy on June 5, and my Gleason was 4+4, would they take that into consideration if there were a cancellation?  She looked at my record and asked if I were on Hormones?  Not only am I not on them, who would ever prescribe them for me if I needed them?  The Uro who did my Biopsy said come'on in for his surgery; the Loma Linda MD won’t even speak to me I am told until my scheduled consult Sept 12; who is the pc patient advocate?  This scenario prompted by the Hormone question was red flag #2.  (BTW the best pc advocate that I  have over these past four months is this Healing Well site.  Every other participant seems to be a specialist and it ends there.  Surgery, Proton, Cryo, Radiation - all specialists, no patient advocate. )

3.      Later in this conversation I asked the nurse if there were problems after treatment requiring surgery, could surgery be performed (or will the tissue be damaged precluding this?).  The answer was "Usually."  Red flag #3.

4.      I then asked what kind of follow-up was there after treatment.  She said a three month checkup including a PSA.  I asked did anyone ever fail that three month checkup. She said “Oh yes.”  I asked do they then administer the Proton treatment again, and she said “No, once it is completed, you can never have it again.  There is no follow-up treatment if you fail the three month checkup."  Nail in the coffin for red flag no. 4.

 

     The overview is that I have an aggressive cancer in the early stage (10% of 1 in 12 samples).  Waiting for an October – November Proton treatment that appears to not be geared toward aggressive pc seems fraught with failure.  Removing my prostate surgically in August, I believe I am terminating the cancer progression early enough before it can escape the whatcamacallit (new medical term otherwise I think the word is capsule).  Of course the side effects don’t appeal to me at all; they sure outweigh the long term possibilities of not doing it. 

 

     Why this post?  Mainly to thank this forum once again for all the help making this otherwise difficult decision.  You (we?) are a great collective advocate with the pure number of posters helping to keep the guidance honest.


Walt


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 7/20/2007 11:26 PM (GMT -7)   
Walt,
I don't blame you for that I don't want to wait feeling. And I had the same issue with the radiation options as the primary treatment. I don't discount the technology, but it is subjective when talking about accurate staging of this disease. I have heard the great advocates here talk about it and they are very upbeat and some have even done quite well with the proton treatment at LL. The answers you received weren't meant to sound like red flags. Even with my surgery selections there were red flags. Thats why I studied on the web and searched the lands high and low for a well known surgeon. The latest technology is da Vinci and it is the gold standard for treating PCa. For me Walt, I am a Stage III patient. I eventually made it to the radiation table, but only after the surgery was completed. That is the right order of these events. My surgeon lived up to his billing and I had little issues with surgery. It was not in his control to have to put at advanced stage. It just went with the territory of a high PSA (19.8), and 4+3 Gleason. Not sure where you are but the SoCal places are USC and City of Hope. CoH was my choice as the man who did the work was the director of the PCa program, one of the top PCa programs in the country and world. You go to that website and look at the credentials of the two top surgeons there and you get my drift. That's enough endorsement from me. There are many great da Vinci surgeons out there. I was just picky. And lucky to get my top choice. Stay close and keep us posted.


Tony

Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 7/21/2007 3:28 AM (GMT -7)   

Walt,

The decision process for treatment is so very demanding - and individualized.
I personally agree with each of your concerns - and like Tony recommend a consultation with City of Hope as they seem to focus on one of your major concerns: discussing ALL treatment modalities without championing any particular choice.

Personally, if your age and health warrrant it, I too would choose the Robotic Laperascopy as it seems to have the most potential for total recovery - and the most posibilities for future success story options.

Thanks for sharing your thoughts on your decision-making process. 
This will be very helpful to others that are suddenly presented with this fight.

Your Friend,

CCedar


2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.  + Confined:)
Texas Hill Country+FRESH Produce Department Manager + Have you had your 5 colors today?


same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 7/21/2007 2:12 PM (GMT -7)   

Thanks Tony and Cedar. 

     The Pittsburgh metro area has a population of more than 2 million and is the 11th largest city in the US; yet we only have one surgeon certified for the DaVincci laparoscopic prostate surgery.  Fortunately that is who will be doing my procedure.

      The strongest factor in this whole thing is my Gleason being 4+4.  Having an uncle who also had pc and an aunt who was a non-smoker like me yet passed away from cancer I simply don’t want to give this dreaded stuff any edge.


Walt


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 7/21/2007 2:32 PM (GMT -7)   
Walt,

I guess we'll all have to hope that you're one of those whose diagnosis is down graded upon final pathology:>)
Good Luck and well wishes for a speedy recovery......in advance!

Swim
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 7/21/2007 5:13 PM (GMT -7)   
Good luck Walt. I personally agree with this change in treatment. You are right about being concerned about a Gleason 8 and Swim's correct in that we hope the post-op pathology brings you a positive outlook. Don't forget we are here to give you all the support we can and don't be afraid to call on us...

Tony

same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 7/21/2007 5:13 PM (GMT -7)   
Swim your comments said a ton to me, and I greatly appreciate it. First off, I never had any idea that there was such a thing as a “Final pathology.” Now that you have been kind enough to say this you better believe I will be asking the results, and what they signify. Chances are probably slim of a down-grade, but since that is the only chance I have I want to make the most of it. This is one more example of how I have only specialists to talk with, and your posts are so valuable to help anyone get a broader understanding of what this pc is all about.

Many thanks also for your good wishes.
Walt


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 7/21/2007 6:27 PM (GMT -7)   

Walt:

Glad to hear that you have made a decision on the treatment that best suits YOU and your situation.  Know it is a load off of your shoulders.  All the best to you.

Dutch


Diagnosed Feb 2001  (Age 65)  Currently 72
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - Aug 2001
Have had no side effects.
6yr PSA - 0.19
 
Our responsibility now is to educate men about Pca, PSA and the importance of early detection. 
 
 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 7/21/2007 6:30 PM (GMT -7)   
Walt,

You are quite welcome:>) And...thank you.

There are 2 pathologies done when surgery is a man's choice. "Clinical" pathology is the biopsy staging. This helps guide treatment choices, tests and so on. There is then the "surgical" (post-op or final) pathology once the prostate has been removed and examined. This is when margins, lymph nodes, vesicles, nerve bundles and the bladder neck are all examined closely. Again, this is what helps guide predictions and follow up.

Point of interest. More than 80% of excised prostates have bilateral involvement. Don't be alarmed to hear this later on. It does not imply a worse prognosis.

PS: "Restaging" is often done via biopsy for men who have had treatments other than surgical also.

Swim
 


same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 7/21/2007 7:08 PM (GMT -7)   
Dutch,

I agree with you completely in emphasizing that this is what appears right for ME. If I had a Gleason of 7 or less, I am sure I would do the Proton as you did.

Swim,

You said “bilateral involvement.” I do not know that term. Does that mean that I have an 80% chance of some type of cancer on the tissues attached to the Prostate?
Walt


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 7/21/2007 7:17 PM (GMT -7)   
Nope Walt,

It simply means that 80% of prostates with cancer, tumor is found on both sides of the prostate. Of course this means 20% have some amount of cancer found only on 1 side :>) From what you have posted, 10% of one core? Sounds pretty promising to me!!
I'm a half full kind of thinker!!!

Check out sites such as prostate-pointers or maybe Yana. My preference is either urotoday.com or urologytimes.com. Good information is pretty easy to find once you get into some of the sites. Good Luck.

swim
 


same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 7/21/2007 7:48 PM (GMT -7)   
Thanks for the quick response SWIM. I just finished searching to find out what my T1c staging meant.
Walt

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