What this forum has meant to me

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Mike A
Regular Member


Date Joined Feb 2007
Total Posts : 213
   Posted 5/2/2007 10:53 AM (GMT -7)   
I’ve been following this forum since late last year. In a large part it has been as a reader, as I had very little to offer in the way of experience, advice, etc. Now that my surgery is over, and my recovery is well underway, I hope to be of more help, as I offer my two cents worth to the discussions.
But, I wanted some of you regulars to this forum (Bluebird, swimmom, biker90, jetguy, Green Acres, Tamu, pcdave, and so many more) to know than even though I’ve never met any of you, just what all of you and this web site have meant to me.

You were in this with me - when I thought I was the only one.
You were reassuring - when I was ready to panic.
You were answers - when all I had were questions.
You were strength - when I felt I had none left.
You were advice - when I wasn’t sure what to do.
And most importantly
You were a friend - when I felt so alone.

To the newbies to this forum:
If you are looking for support, you have put yourselves in good hands.

To all the veterans:
Thanks.

Mike
June 2005 - Age 53 PSA 4.8 at regular physical
October 2005 - After several rounds of anti-biotics, PSA 5.2 at Urlogist
November 2005 - Biopsy negative
July 2006 - PSA 5.9 at regular Physical
October 2006 - After several more rounds of anti-biotics PSA 8.1
November 2006 - Second biopsy - Positive
December 2006 - Gleason (3+4=7), Tumor T1c, CT Scan and Bone Scan Negative
January 2007 Robotic Prostatectomy - Tumor confined but larger than thought, only one nerve able to be spared. Margins clear.
February 2007 - Three to four pads a day, no erection with viagara.
March 2007 - Down to two pads a day, had first intercourse with Erecaid pump and bands, otherwise still flat tire.
April 2007 - First Post-Surgical PSA 0.02 and a great relief! Down to one pad a day. Still unable to achive erection without pump. Patience..Patience!!!!!!


lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 5/2/2007 11:52 AM (GMT -7)   
Mike - how good to hear from you. Wish you'd been visible to us whilst you were going through your journey. So glad though that we were all here with our experiences to help you.

It always amazes me to realize that each and every thing we say just may impact someone without us even knowing it.

We found this forum about 3 weeks post surgery and how we wish we had found it 6 months earlier when we too had our decision to make. We did have the "advantage" (?) that Bob's older brother had been through the very same thing 18 months prior to us so we didn't have as much of the trauma as someone totally not expecting cancer.

Keep us posted; help those newbies and hi again.

;o) Linda & Bob

PS - Mike we notice from another post of yours that you were also only spared one nerve (as was Bob). We have recently opted for injections of Trimix for intercourse and the results are very favorable once the "trauma" of sticking oneself has been dealt with. Read our postings on "injection therapy" along with Tamu; Raheeb; EB and others.
Bob (60) had laproscopic prostate surgery on Sept 27, 2006 - 2/12 malignant biopsy samples - gleason 3 + 3 = 6. Follow up PSA results and pathology results received Nov 14th are NO MORE CANCER! Gleason changed to a 3 + 4; cancer completely confined to prostate; (even a second more aggressive, previously undetected cancer) PSA UNDETECTABLE November 2006 AND February 2007.


Bob also takes Hydroxyurea to control Polycythemia (elevated red & white cells & platelets) has secondary condition . . Myelofibrosis) -- If anyone has experience or knowledge of these, please post us

Post Edited (lawink) : 5/2/2007 12:51:36 PM (GMT-6)


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 5/2/2007 1:04 PM (GMT -7)   
Hi Mike and welcome to the best place for support, info and hope.

Like Linda said, you never know how or who your experiences might benefit so keep posting. We have so many different situations represented here with so many different diagnoses and treatments that every who contributes is going to help someone. Sharing our emotions as we make the journey is also valuable to us and to those that follow. I was told early on to "let it fly" because this forum is not required reading for anyone and someone's bell might ring by reading my experience.

Keep up the good work and best of luck...

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04. 
PSA on 4/4/07 - 0.00  T level - 48  Restarted T therapy.
Next PSA on 7/11/07.
 
 "Cancer feeds on fear - starve it to death."


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 5/2/2007 2:45 PM (GMT -7)   

Mike,

When I look at the hits that are made to threads on this forum it just amazes me.  We know that there are a lot of lurkers and that is okay.  If someone achieves knowledge through our interchanges then that is all the thanks that we need.  PC is not just dealing with the medical treatment.  It is so much more.  It impacts your life as you know it and changes it.  I reflect upon my journey and see that although I despise having had PC I do believe that I am a better person as a result.  The other thing about this forum is that it just swells you with emotions from all of the commitment and help that people providing.  It gives you a boost about the goodness in human nature.  Love thy neighbor is no doubt the theme of this forum for that is what many are doing everyday. 

Take care my friend and recover well. 

Tamu


Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3
Da Vinci on 11/01/06, Catheter out on 11/13/06
56 Years Old
Post Op Path, Gleason 3+3, Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06
No more pads as of 1/13/07
Began injections in April '07


GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 5/3/2007 5:57 AM (GMT -7)   
Hi, Mike. Sounds like you're doing great - and all will be well in the future. I, too, lurked for about a month, scarfing up information before jumping in. In fact, it is here that we first learned about the da Vinci robot! Then, it was off to the races - getting more info and finding a doctor with "more than a few" surgeries under the belt.

There are strengths to be gained and given here and it's a "pleasure" to see you coming into this amazing circle of folks - vets and noobs alike.
Husband age 66
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06 - Austin, TX w/Dr. Randy F.A.G.I.N.
T2a (at biopsy)
At pathology - cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/3/06 - undetectable!
Update: 11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
Future: PSA tests twice-yearly for now - Next one: 4/17/07
 


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 5/3/2007 6:45 PM (GMT -7)   
I don't know how I would have handled everything without all the support and advise on here.
Glad to bo on here with all of you.

See ya
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 8th Started Detrol LA to see if it helps with the leaking?
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.
    May 30th Follow up and 3rd Post Op PSA
   


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 5/4/2007 5:34 PM (GMT -7)   

Mike A,

Hello, I am Kitt and I am glad you have found what you  needed from this forum. It is wonderful the way the members know their options and understand their medical problems.

Someone always has an answer or knows where to find it. 

Please feel free to post and let us get to know you.  Either way you are a valued member.

 

 


 
Respectfully
 
Kitt
 
Depression 25 years, Husband Crohns Disease 30 years
__________________________________________________ 
"If you doubt you can accomplish something, then you can’t accomplish it. You have to have confidence in your ability, and then be tough enough to follow through.”
Rosalyn Carter
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 5/16/2007 12:09 PM (GMT -7)   

Having been gone for 11 days and to come home to a message like this….

 

W.O.W……   This is Powerful...

 

 

         Mike ~

This “HUG” is for “You”!!!!!  J

 

You have truly touched the soul/spirit of so many here on this forum

The greatest gift we can give someone is a HUG…. It is a gift we truly don’t mind returning… 

 

Thank you for the powerful message that has come through loud and clear!!! 

We accept it with open arms… Knowing that we do make a difference is food for the soul. 

 

Happy tears ~ bring a warm heart….    
This message is truly Heartfelt……  from Lee & Buddy

mama bluebird - Lee & Buddy… from North Carolina

J  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 with "wide excision"

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

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


B&B's World
Regular Member


Date Joined Mar 2007
Total Posts : 120
   Posted 5/17/2007 7:38 PM (GMT -7)   
Mike,

I, too, was able to find answers here without having to "sign in" . It helped both of us so much. Thank you for putting your history with your signature.

BTW, B is doing fantastic (his word), back at the gym without self-consciousness and feeling great.

Becky

Age 51

Gleason 3+3

PSA from 3.2 to 4.3 in one yr

Biopsy 11/06

DRE negative

4 of 12 cores positive, one lobe, less than 10%

Inflammation only second lobe

Stage T1C Clinical Dx

PSA prior to surgery: 3.9

Da Vinci Prostatectomy 2/27/07:

PCa in BOTH lobes 5-10% of gland

Gleason 3+3

Negative tissue margins

Bladder, seminal ves, vas deferntia negative

Two inguinal hernia repairs

Catheter removed 1 wk after surgery

Full continence (no pad needed) 1 wk after surgery

Full potency, 12th day after surgery
 
 


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 5/19/2007 12:13 PM (GMT -7)   
Hi Mike
 
Thanks for the beautiful sentiments that you have expressed here.  I can see that it comes from your heart.  We are all here to help each other and when we hear that our efforts are appreciated it means a lot to us.  I am so happy to hear that you are doing well.  I hope that all of your future PSA tests will be happy ones.  God Bless!
 
Dave
68, 29-core biopsy 9/27/06, PSA 7.1, Stage T1c, Gleason 7 (3+4) [less than 20% in one area],  Gleason 6 [less than 5% in two other areas], negative DRE, bone scan and Endorectal MRI. Completed 39 Proton radiation treatments 2/22/07-4/18/07.
First PSA test to be taken 7/07.


gtmriviera
Regular Member


Date Joined May 2007
Total Posts : 338
   Posted 5/19/2007 12:28 PM (GMT -7)   
Mike, Your comments are great and just what I would expect to see in this forum.  If you haven't read it (and I haven't gone back to see if any of the postings were yours) take a look at the "laugh" thread.  I hope that you get a smile from the old St. Elsewhere gag. Doesn't anyone else remember that show?

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 7/27/2007 6:48 PM (GMT -7)   
tongue   tongue   Yea !  ~   Mike,
 

2nd    PSA…   !!!~~~>>>  Woo~Hoo  <<<~~~!!! Undetectable

 

Cause  for   celebration!!!!!  Definitely!!!     

What a wonderful day it is ~ each and every-day….   

Enjoy it to the fullest. 

Yippeeeee!!!!!! From  Lee & Buddy

*     *     *     *     *     *

The ultimate “goal”… we all strive for… Thank you for sharing ~ that your goal has been met….

It is very important to “all ”of us!  This is a way of positive feedback…

A way of showing others Hope… and a way of Sharing.  

J  Caring is Sharing ~  Thank You for Sharing  J

 

 

 

 Threads started by Mike A

(direct links ~ just click on the title!  Reminder to click on the REFRESH icon once there)

 

05-02-2007     What this forum has meant to me  (currently on this thread!!)

 

 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 7/27/2007 6:53 PM (GMT -7)   
Partial Quote from Mike…
I hope to be of more help, as I offer my two cents worth to the discussions.

 

  tongue  Hi ~ Mike,

 

You have far surpassed 2 ¢  worth ….. with 63 Reply postings to others lending encouragement and positive vibes… Thank you for staying close and it’s really good to see your PSA results.

 

Signatures are sooooooo important!!!!!!  So we know where our friends are on their journeys... 

We continue to keep you close in thoughts and prayers.

In Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

J  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

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)

 


PianoMan
Regular Member


Date Joined Feb 2007
Total Posts : 365
   Posted 7/27/2007 7:07 PM (GMT -7)   
What a nice thing to say Mike -- and so well expressed. I also wish I had found this forum before my surgery, but I'm glad I found it when I did, which was about three weeks out.

I don't remember how I found my way here but I remember it was on Superbowl Sunday, 2007.
 
Just before the game, I signed on with the handle, "PianoMan," because I'm an amateur piano player.  I'd never used that name on the net before. Then, within about two minutes I hear Billy Joel singing the national anthem at the game! "Must be kismet," I thought.
 
And I was right.  For me, this forum has been a source of strength, comfort -- even a good laugh once in a while.  Ya can't ask for more than that.


54 years old

PSA = First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06 (6 out of 8 cores positive), both lobes, Gleason 3+3 = 6

Da Vinci Robotic RP surgery, City of Hope, Jan 12, 2007

Post surgery pathology – Organ confined, Gleason still 6, margins clear.

First post-surgery PSA -- Undetectable, 2/20/07

Post Edited (PianoMan) : 7/27/2007 8:23:14 PM (GMT-6)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 9/30/2007 5:38 PM (GMT -7)   

tongue  Hi ~ Mike,

 

Thinking of you and wanted to let you know!

 

You have contributed so much to this forum and I wanted to let you know how much we appreciate you!

Hope things are going well for you and yours… as we continue to move forward.

Keeping you close ~ In Friendship ~ Lee & Buddy


same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 9/30/2007 8:08 PM (GMT -7)   
Mike, Well said. You probably speak for all of us who have been here more than once. . .Walt
Walt
 
Born 1940 - 67 yo
PSA 6.9 March '07 to 5.1 July '07
Biopsy 6/5/07
Gleason 4+4


War-eagle
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 10/1/2007 6:59 PM (GMT -7)   

Mike,

Amen brother. These special people came to my aid last week, just as they have for so many others.

God has sent His special angles into our lives. Your words are so true about what these people, including yourself, can do to help put ours lives in order. Cheers to Mama Bluebird and her band of brothers and sisters.

I love you all......................and WAR EAGLE.

Walt


Age: 54
PSA 43 7/2005
Biopsy 12/14 Gleason 7 & 9
Divinci 9/2005 - spread to bladder
HT - 10/2005 (Eligard every 6 months)
RT - 10/2005 (38 treatments)
PSA 0.12 to 1.9 2/2007
Bone Scan and CT 4/2007
Casodex 4/2007
Spread to Spine (L4 & T5), rib, and pelvis
Zometa infusions 4/2007
PSA 4.9 8/2007
PSA 4.9 9/2007
 
"I will persist without exception - I will find a way where there is no way"

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