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same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 9/29/2007 7:52 PM (GMT -7)   

     To show how very little I knew about pc when I signed on eight months ago, all you need to is look at my user name, “same_as_u”.  I honestly thought that this was similar to my appendix removal and we all will just be having the same thing done for the same problem.  What an education I have had - although far from complete.

 

     Back in March I copied down a post by Bluebird.  I had no idea it would ever apply to me, as it will soon be exactly what I need to know about my scheduled surgery.  I copied it because it was so well written and conveyed such detail that if I ever would need it, I knew I would never find a better document on how to prepare for pc surgery.  Bluebird what you wrote showed such intelligence, compassion for your lucky husband, and a deep level of caring for everybody going through this.  As I read your post, I really appreciated what you have provided for me and the others considering surgery. My heart really goes out to you both for having to encounter this at a relatively younger age than most.

 

     So, name your poison.  People here have been comparing surgery to IMRT to Protons.  It really doesn’t work that way I have found out.  I have Gleason 4+4 and everyone with a Gleason 7 and higher may only consider comparable (total) treatments.  Please jump in if I am wrong – I will do my humble best.

 

     Here are the options for 7up:

Surgery

IMRT & hormone treatment & seeds

Proton with Hormone treatments

     In other words, Proton and IMRT cannot be tossed out there as options because they don’t stand alone.

 

     Here is nothing I’ve ever seen written; it is just my interpretation of why the dreaded hormones.  Visualize the character of the cancer cells with Gleason 7+.  Healthy cells are all nicely circular and close together.  As the Gleason score increases, the cells become more deformed and further apart.  Radiation treatments such as IMRT, IGRT, and Proton need to hit the cancer tumor.  What the hormones do is shrink the deformed cells and bring them into a tighter grouping (less space between cells) so that the radiation can hit its target effectively.  Got the picture?

 

     My (current) final decision is surgery because I am weighing the possible side effects of the hormone shots along with much worse follow-up treatment possibilities against the likely incontinence and poorer sex outlook of surgery. 

 

     I welcome other opinions and corrections.  Remember, I’m the guy that thought this was going to be just like removing an appendix.

 

Walt


Walt
 
Born 1940 - 67 yo
PSA 6.9 March '07 to 5.1 July '07
Biopsy 6/5/07
Gleason 4+4


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 9/29/2007 8:04 PM (GMT -7)   
Hey Walt,

Yeah we sure do learn a lot in a short time after diagnosis. I could visualize myself wearing diapers and hobbling around with a cane for the rest of my life. And I thought penile injections was the worst thing I could do to myself. Well, I had surgery and was dry the day after the catheter came out. I use Viagra and injections and have a better sex life than I had before cancer. Go figure.

We study, we listen to folks like Bluebird and Swim here on the forum, we get second opinions and we make a decision. Then we get in the best physical and emotional shape we can manage, move forward and never look back.

PCa is not the end of our life. It is the end of our old life and the begininning of a new life.

Good luck...

Jim


Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2C. Gleason 3+4. Cancer confined to prostate.
PSAs from  1/3/07 - 7/18/07 0.00. 
T level on 4/2/07 - 48     On 7/16/07 - 613
Started Tri-Mix on 8/7/07.  .02 ml and 50 mg Viagra.  It works!!!
Next PSA and T tests on 10/17/07
 
"Patience is essential, attitude is everything."
 


same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 9/30/2007 5:48 AM (GMT -7)   

Thanks Jim.

     I appreciate you offering a ray of sunshine through these dark clouds.

Walt


Walt
 
Born 1940 - 67 yo
PSA 6.9 March '07 to 5.1 July '07
Biopsy 6/5/07
Gleason 4+4


Hagrid
Regular Member


Date Joined Sep 2007
Total Posts : 60
   Posted 9/30/2007 8:59 AM (GMT -7)   
I consider PCa as just God's way of getting my attention. Before my prostate cancer, I was alive. Now I am LIVING.

Quite a difference.
Age: 57 (49 when diagnosed)
PSA 100+ 3/1999
Biopsy -positive, both nodes 03/1999
Bone Scan and CAT scan negative 4/1999
Radical prostatectomy and bladder neck removed 04/19/1999
HT - 05/1999 (Lupron every 3 months for 9 months)
RT - 6/1999
PSA 0.0-0.2 until 2001
Casodex 150mg 2001 until 2006
Casodex 100mg 2006-present
PSA 0.4-0.6 2001-2007
 


41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 9/30/2007 3:43 PM (GMT -7)   
Walt,
 
Read my recent lengthy post on making a decision about treatments.  I didn't have a Gleason 8 but a Gleason 3+4.  So things, as you so aptly point out, truly are different for each of us.  Here is what I understood from my research.
 
There seems to be mixed opinions amongst the medical community as to the efficacy of various treatments.  Some believe that surgery is a failure if there are postive margins.  That is because if you don't get all the cancer, you have to do other treatments.  It is true that the higher the Gleason score or PSA, the higher the probability of having extracapsular extensions that result in positive surgical margins. 
 
However, my surgeon, Dr. Catalona, feels that surgery is not necessarily a failure if you have positive margins.  He feels that because there is less cancer post surgery adjuvant radiation treatment has a better chance of being successful.  Dr. Catalona in Chicago is one of the top researchers of Prostate Cancer in the country.  He alone has done over 5000 surgeries.
 
But also consider that you can have a higher Gleason score and end up with negative margins post surgery.  Your PSA is not that high, so it may be indicative of the cancer still being organ confined.  If the cancer is still contained within the gland, then you still have a better prognosis post surgery than if you have positive margins post surgery.  In this case, I'm not sure if other treatments would be recommended or needed.  Also, if you have Protons or IMRT and your PSA goes down nicely and you don't have subsequent rises in your PSA, you may also not need additional therapies.  But I'm not 100% certain on this.
 
Also remember that all you know now is your clinical stage...which is what can be known of your cancer from your PSA and biopsy.  Whether your cancer is still organ confined is what no one can tell you without having surgery.  That to me is the "gamble" when you have surgery. 
One thing the Radiation Oncologists say is a benefit with radiation as a primary treatment is that there is a margin around the prostate that is treated, and in particular if you have a higher Gleason score and PSA this can give the radiation a better chance of killing all the cancer even if it has escaped into the prostate bed.
 
Bottom line is that there are no guarantees with either surgery or radiation (Protons or IMRT or seed implants, etc.).  With either there is still some chance that the cancer has spread to the lymph nodes or that a person has micrometastisis (systemic disease that is as of yet undetectable by bone or CT scans).  If that is the case, then there is a risk that biochemical failure will occur post radiation or surgery (this is defined differently for surgery and radiation). When biochemical failure occurs, other treatments such as hormone therapy can be used if the disease is believed to be systemic vs. local or locally advanced (in the prostate bed).  Or salvage radiation can be done post surgery or salvage cryosurgery post radiation if the disease is still felt to be localized or locally advanced.
 
I guess there is also the option of not awaiting biochemical failure of either surgery or radiation to start Hormone Therapy.  Again, I'm not as informed on this, as this was not yet my concern.
 
Maybe you know all this already.  And maybe I'm wrong on some of it.  I just wanted to share with you what I learned in case it might help you. 
 
Good luck.
 
Doug
 
42 yo.
PSA 4.65
Gleason scores from 4 pathologies of the same biopsy with 2 of 12 cores positive for cancer (if this isn't confusing to the patient...):
 
1) both cores 3+4 (Weiss Memorial)
2) one 3+4 and one 3+3 (Univ. of Chicago Hosp.)
3) both cores 3+3 (Mass General Hosp.)
4) both cores 3+4 (Northwestern Memorial Hosp.)
 
 
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.
 
and the winner is...post op Gleason score of 3+4.
 
Good pathology report with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  Amazing how something so small can cause such problems!
 
9/27/07 - Catheter removal...let the games begin...
 
 
 
 


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 9/30/2007 6:48 PM (GMT -7)   
Walt,

Same_as_u?  Yes we are all the same in some sense, and yet all different!

I really appreciate your discussion of Hormone Treatment.
Someone here once said HT also slows down the growth of cancer cells -
   - giving us time some - time for living, for treatment options, to turn the situation around.

Continuing on this idea of "all the same while all different....."
   -and "visualizing" our escape to freedom from cancer:
...I told a story to sixteen 10 year-olds today about
a man that left our earthly experience on a "chariot of fire" 
   - and never died nor left his body behind.....
   - To this day, people all over the world still set a place for him
      at their table - as a sign of welcoming any "not-so-different-stranger."

Then the seventeen of us all prayed silently in the Spirit
by candlelight for 30 seconds for all of you here.

May your chariots never run out of fire!

CCedar
ICTHUS!

same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 9/30/2007 7:55 PM (GMT -7)   
Thank you Hagrid and CCedar for your very caring messages. . .Walt
Walt
 
Born 1940 - 67 yo
PSA 6.9 March '07 to 5.1 July '07
Biopsy 6/5/07
Gleason 4+4


same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 9/30/2007 8:00 PM (GMT -7)   
Doug,

It was so good to read your “Lengthy post.” While I arrived at the same decision as you for apparently very similar core reasons, it really helps to hear that you also did the homework needed and arrived at the same conclusion.

We both started with aggressive 7 & 8 Gleason scores. One of our most significant deciding factors turned out to be laying the best groundwork in case any future treatment is needed. Even though we are a generation apart, God willing, I still plan on walking this earth for at least another 20 years.

My surgery scheduled for November 2. Like you, I believe I have the best surgeon for hundreds of miles. It will be performed at my favorite hospital.

My fear does not center on the operation; it is mainly on loosing a body part. I dread the possible incontinence. Thanks to Jim’s post above I will not be nearly as concerned with the ED.

Walt
Walt
 
Born 1940 - 67 yo
PSA 6.9 March '07 to 5.1 July '07
Biopsy 6/5/07
Gleason 4+4


uncledan
Regular Member


Date Joined Aug 2007
Total Posts : 120
   Posted 9/30/2007 8:52 PM (GMT -7)   
A lot of info and well written, thanks. Gleason scores are not a true indicator of whether the cancer has escaped the prostate. My Gleason was 7 ( 3 + 4 ), but when the pathology report came back the reading was ( 4 + 3 ) still 7 but closer to 8 than 6. However the cancer was encapsulated and my 6 weeks PSA was 0.000 I am so glad I decided to have the da Vinci procedure. At least I knew the path doctor had something to look at and I would know one way or the other true results. Thanks for letting me vent, God Bless, Uncle Dan
Age 67
No symptoms, DRE negative, 10 - 06 PSA 5.44
01 - 07 PSA, 6.47 5 - 07 CT and Bone scans negative, 05 - 07 Biopsies, 2 of 6 positive,
Gleason Score (3+4) 7 Stage T1c
08 - 14 Dr. Dasari - Baptist Hospital, Nashville
da Vinci RAP, five hours surgery
Some right nerve and all left nerve removed,
Hospital disscharged 8 - 16
Pathology report Negative margins, encapsulated, 50% left side, Lymph nodes 2 R & 1 L - Negative
R & L seminal vesicles - Negative
Gleason changed (4+3) 7 closer to 8 than 6
9 - 26 Great PSA 0.000
9 - 27 Starting on meds for ED
9 - 30 Appear dry 2nd day no pad


same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 10/1/2007 6:46 AM (GMT -7)   
Thank you Uncle Dan.

Good point about escape. I had stomach and bone scans last week that fortunately showed the cancer was confined to the Prostate.
Walt
 
Born 1940 - 67 yo
PSA 6.9 March '07 to 5.1 July '07
Biopsy May 2007
clinical stage T1c
Prostae size 25 by TRUS
Prostate Surgery scheduled for Nov 2 2007
Gleason 4+4
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 10/1/2007 4:21 PM (GMT -7)   

tongue    Hey ~ Walt,

 

It really is hard to believe that your first posting on HW was 3-10-06.  It seems like yesterday ~ and then again it doesn’t.  I’ve followed you closely as you’ve traveled your path in search for answers.  Being an “engineer”… I wasn’t surprised : )  but I will tell you this… I am so thankful you’ve done the research because you should never be in a situation that you would ever think back… why didn’t I check this ~ or why didn’t I check that.  I think you can be confident in your decision and can now move forward.

 

Walt ~ you have truly touched our heartstrings with your posting above.  When we came to the forum ~ it was after surgery and when I read the postings I knew I “had” to share “Our Journey”.  Buddy and I have had a wonderful life together (23 years) and we planned early on to retire at 50 and travel.  Well ~ Buddy retired in 2004 and waited patiently for me to retire in 2007.  During this time he continued a wellness program to keep himself fit and healthy.  Yearly physicals, exercise, and healthy habits.  And then ~ January 2006… we were faced with an abnormal DRE… then the biopsy and then the words “prostate cancer”…  The bus hit hard but after about 30 minutes (after the phone call)…. I found the little bulletin board pushpin in the shape of a school bus… and I went in to Buddy and said…. “This is what hit us ~ we can get up from this and continue moving forward”… we did and we have….  This journey had to be shared. 

 

So ~ here we are 21 months later and we are still sharing.  You have re-committed me to the fact that we are here for a reason!!!  Thank you again for your kind words and thought filled message in letting us know ~ we ~ have made a difference!  The greatest give you could have given us ~ and we accept it graciously. 

 

Now ~ it’s time to move forward onto the stepping-stones that will lead you as many say ~ over the mountain to the other side.  And we will all be right here walking with you.

 

http://i206.photobucket.com/albums/bb179/mamabluebird1955/Stepping-StonestoHealingWell.jpg

 

 

As your Knowledge grows the POWER to make YOUR decision Grows!!!!!

A strong foundation to keep us strong and steady.

 

Now ~ lets get you moving toward that November 2nd date…

Have you been doing your kegels???   confused I sure hope so.  tongue  

 

Now to keep things is the right perspective…. Your goals will be in this order!!! 

  1. Becoming cancer Free
  2. Regaining Urinary Continence
  3. Regaining Sexual Potency

And... it will take time ~ so set your mind right now ~ and work with it!  Not against it!  

Mr. Hang is a friend not a foe… unless you make him so.  He has a very important job to do. 

 

We will continue to keep you close and we have always had you tucked close beneath our wings ~ 

 

This Hug is for You !!!  keep it close…

 

In Friendship ~ Lee & Buddy 


mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)


same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 10/1/2007 5:25 PM (GMT -7)   
Hi Bluebird,

So I asked my fine surgeon, who has done more than a thousand of these, what do I need to do to prepare for the upcoming surgery? I told him several minutes earlier that my primary concern is incontinence. His only response was that I should loose some weight. OK, I dropped 9 pounds – that isn’t the point. When I read your journey, you mentioned the kegel exercises and walking stairs among other things to do in advance.

Bluebird, your well-written journey was the only source I had for this type of info on how to prepare. Your words certainly must have also been welcome by many others. Not only have I been doing kegels, I’ve been walking stairs and spending some time on those stepping machines at the health club. Your influence alone.

Many thanks,

Walt
Walt
 
Born 1940 - 67 yo
PSA 6.9 March '07 to 5.1 July '07
Biopsy May 2007
clinical stage T1c
Prostae size 25 by TRUS
Prostate Surgery scheduled for Nov 2 2007
Gleason 4+4
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 11/15/2007 1:12 PM (GMT -7)   

Hi ~ Walt,

I’m so thankful you've allowed us to walk with you and Diane…  Thank you for this warm message ~ it was received loud and clear.  I responded in our e-mail but neglected to add it here too!!!  We will continue reaching out by sharing.  Keeping you close as we all move forward together.   In Friendship ~ Lee & Buddy

 

Helping to keep Walt's Journey together....  for future readers...

Quote from Walt... copied from Group Hugs for Walt *same_as_u… WELCOME HOME!!

   Thanks to all of you for your good wishes, prayers and thoughts for me.   

     I am in a pretty good frame of mind with this being my sixth day after RP surgery.  The toughest part is behind me, namely making the decision for my type of treatment.  I cannot emphasize enough how much of a role this forum played in helping reach that decision and finding the fortitude to go through with it.  Bluebird and Doug were especially pillars of strength for me.

 

     On my first night home, as I selected my pajama bottoms to wear, a huge smile came over me.  I never could figure out why bluebird mentioned in their journey cutting pajamas from the waist to the thigh.  As soon as selected the short bottoms, I realized the path for the catheter tube was the reason.  Diane made the cuts the next day so that I could wear the long legged pj’s which I prefer. 

 

     My daily activities have been going ok.  I finally started regular bm’s without milk of magnesia yesterday – those 15 minute walks do wonders.  My biggest concern is leaking where the catheter tube comes out of my penis.  Strangely, this only occurs when I empty the bag or am seated doing a bm.  I figure that the leaking when I am emptying my bag is because everything is closed from the bag to the other end of the catheter; there is no air coming into the bag as the urine empties out.  I have tried emptying smaller amounts then waiting one minute and continuing until the bag is not all the way empty.  This has helped a lot.

 

     I was discharged Sunday, and my days have been walking, resting, eating and working at my computer.  After the good results of walking on Wednesday and Thursday I realized that I spent too much time at the computer on Monday and Tuesday.  Of course that is the most enjoyable; it is simply taking too much time away from the walking and rest where the benefits are.  From now on, I am trying to limit computer time to 30 minutes sandwiched between a walk and rest or two walks.

 

     Please excuse the lengthy post.  It is good to have come this far, and I truly can’t thank all of you enough.

 

Walt


Walt

Born 1940 - 67 yo

PSA 6.9 March '07 to 5.1 July '07

Biopsy May 2007

clinical stage T1c

Prostate size 25 by TRUS

Prostate Surgery scheduled for October 12 2007

Gleason 4+4

 

Post edited to add signature ; )

Post Edited (bluebird) : 11/15/2007 1:16:02 PM (GMT-7)

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