Vet's Prostate Cancer Journey

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veteran1
Regular Member


Date Joined May 2007
Total Posts : 133
   Posted 6/20/2007 8:18 PM (GMT -7)   
I have put this "Journey" off for as long as possible. Why now? Mostly because of the incredible bravery and positive attitudes that are so much a part of you and all of the wonderful people I've come to know and admire on this site.

My Journey is not as positive as some. My attitude, thanks to you is getting better.

Let's go. I am 54, divorced and have no children. I recieve treatment at a good hospital in Chicago. I was living in San Diego when I received a very late diagnosis.

My PSA on Nov. of '04 was 2.29.
In May of '05 it jumped to 4.6 (doubling time 6 mo). This was missed until Dec.'06

My biopsy on 12/03/05 showed a Gleason 10. (I can't find biopsy for # of positive cores).

In complete disgust I immediately grabbed my notes, left everything behind in San Diego, and flew off to family and friends in Chicago.

I was so wraped up in self pity and dismayed anger that my family had to point out to me that my attitute was bodering on the self-destructive. It was time get going.

I found a good hospital in Chicago and lots of family love and support. I even moved in with my parents...at 53!

Still, I was a very suspicious, decidedly difficult patient. My urologist, Dr. B, recommended Retropubic Surgery. I agreed. I almost backed out when my research said that surgery is not usually for patients with a Gleason 8-10.
I was not pleased. But Dr. B. made his case and I had surgery on 02/14/07. Everything went perfectly. Moderate problems with recovery. Two pads a day for about 3-weeks. Nothing
you haven't heard before.

Pathology revealed a T3b Seminal Vesicle
Involvement and a Gleason 9. Sometimes I believe the pathologist didn't have the heart to assign a Gleason 10...Hah!

We, Oncologist and me, knew that due to the agressiveness of this cancer multi-modal treatment was in order. Off to the radiation/Oncologist. By this time, I had met so many nice nurses and doctors that I began to lighten up.

Radiation/Oncologist told it straight up. She said that radiation (Proton) could add years to my life or do very little due to aggressive nature of the cancer. ( I now believe that all PCa can be aggressive.) I was at high risk for distant mets.

EBRT (May thru July 06), coming so soon after surgery, was tough for me. Mainly fatigue and leaking. Bottom line...I survived. We all survive!

I was put on intermittant hormone therapy 12/15/05. Not easy to take. ED intermittent, mineral density bone
loss, fatigue, loss of muscle mass and possible anemia, even hot flashes.I thought I would go crazy. Nah.

Then something awful happened. My 79 year old father (no longer living with parents) switched General Practioners and was informed by his new doc that he had a PSA of 70. Read his old notes from previous (Doctor?). He chalked it up at PSA 7.5 to BPH...enlarged prostate. After comforting my father and mother, I went home and literally beat my fists into the cement outside wall. I don't recomend this form of therapy. It really hurts...Ha.

My dad's doc screwed up and so did mine.Truth is stranger than fiction. This was statisticly impossible. I had a history of PCa without knowing about it. Plus, my 79 year old father is now going through Hormone Therapy. We're cursed, doomed...we're PCa central.

What was poor poor poor me to do. I found you at healingwell. You, through your threads and posts, taught me how to be more accepting and value all the positives in my life. I am in control of my life. Enough anger and the "why me's?
Why not me. No more "if onlys".

Thanks to this forum and your wise counsel, advice, positive attitudes and moral support, I have become a survivor.

I believe this true story will have a happy ending. Comments always appreciated.

Thank You for Listening,

Vet


Age: 54
Diag.12/03/05
Biopsy: Gleason 10
Surgery: 02/14/06
EBRT: June 5th thru July 25, '07
Diagnosis: T3b Seminal Vesicle Involvement, Gleason 9 both lobes
Currently on Intermittant Hormone therapy
May 29th, '07 PSA---- .01

Post Edited (veteran1) : 6/25/2007 12:46:34 PM (GMT-6)


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 6/20/2007 9:03 PM (GMT -7)   

Vet:

Wow, you have had a road filled with bumps, but sounds like you've found a path that is now smoothing out.  I will agree with you that this forum is the best - full of info, comfort and support. 

Continue to do well.

Dutch 


Diagnosed Feb 2001  (Age 65)  Currently 71
PSA 4.8
Gleason 3 + 3 = 6
T2b
Completed Proton therapy @ Loma Linda - Aug 2001
5yr PSA   0.17
Have had no side effects.


montee
Regular Member


Date Joined Mar 2007
Total Posts : 315
   Posted 6/21/2007 2:15 AM (GMT -7)   
I know a little about being on a roller coaster and being angry about a urologist who allowed cancer to grow for 3 years.  I was very angry for a while and reading and researching the internet just about consumed me for 3 months before my surgery, then I found this site about a month after my surgery and it has been a God send reading the many positive attitudes and comments and support on this forum.  You are not just another patient with prostate cancer here, you are family.
 
As I mentioned before I pray we all "live long and prosper"
 
Ron
diagnosed sept 06
gleason 3+4=7, right lobe only
psa 4.7
RP Emory Atlanta December 2006
Path-negative margins, negative lymph nodes
negative seminal vesicles, multifocal perineural invasion, both lobes involved
40% gland involved
gleason 3+4=7
1st psa April 2007-<0.04
 6 Mos PSA <0.04


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 6/21/2007 4:14 AM (GMT -7)   
Vet - thank you for sharing your story. it is a little scary when your father is also diagnosed. my FIL was diagnosed in his late 60s, had surgery at Johns Hopkins, was impotent from that point on, lived a happy life and died of bone cancer (painfree) at the age of 82. Jeff figured he'd get PCa eventually; just didn't expect it as soon as it happened. we've already told our sons that they had better start getting checked on the age of 40 since both of their grandfathers and father has had PCa. like you said, what will be will be, but we can control how we live during these times. take care, Kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test <0.1, 2nd post-surgery PSA test <0.1, 3rd PSA <0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06
3/07 - occasional dribbles and erections with Cialis and pump


veteran1
Regular Member


Date Joined May 2007
Total Posts : 133
   Posted 6/21/2007 5:51 AM (GMT -7)   
Dutch, Ron and Kat,
Thanks for your kind remarks and thoughtful
insite. Dutch, yes it was a bumpy road, but we both know others who've had a much harder road. Ron, thanks for letting me know that I'm not the only one (on this site) to receive a late diagnosis. Kat, thanks for stressing family history.
We're each part of a special , caring family.

Vet

Mike A
Regular Member


Date Joined Feb 2007
Total Posts : 213
   Posted 6/22/2007 5:20 AM (GMT -7)   
Vet,
Thanks for sharing. You've been on a bumpy and curvy road all right. But here's my best wishes and prayers that you you have a smooth, straight and downhill ride for a while.
Best,
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 2, 2007 Robotic Prostatectomy, University of Rochester Medical Center - 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.
May, 2007 - Still one pad a day, even try a smaller pad on occasion. Slight improvement on the ED.
"If patience is a virtue, I feel like the most virtuous guy on the planet!"


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 6/22/2007 5:22 PM (GMT -7)   

Hi ~ Vet,

 

Thank you for putting together “Your Journey”.   It really is important because so many people are coming to HealingWell. 

The more information we can share the better their journeys will be.  Taking time to put everything into words I’m sure is a part of the healing process for you too.  No ~ we can’t look back…. We need only move forward and in the process ~ Helping Others!!

 

It’s heartwarming to know that the forum family of friends ~ helped to shore up some of the stones that seemed a little wobbly to you…. and finding out… hey ~ it’s okay!!!  I have all these hands surrounding we and they feel so warm.  It is our pleasure to continue to walk with you as you move forward… 

 

Please give your mom and day big hugs from us!!!  Thank you for continuing to reach out and sharing your life with all of us.

 

In Friendship ~ Lee & Buddy

 

Personal Threads…started by: Veteran1

 

Veteran1's Prostate Cancer Journey

Do you know your prognosis?

Prostate Cancer By The Numbers

Need Your PCa Book Recommendations...

The Benefits and Side Effects of Hormone Therapy

Doctor orders ProstaScint...

Incontinence and Computers...

Veteran1 Computer problems...trying to solve

Late diagnosis--- From Anger to Acceptance

How long are hormone shots effective?

 

Advice Needed on High Risk Cancer...

Still Alive

 

Post edited to add new threads  


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 :)

Post Edited (bluebird) : 11/9/2007 8:31:52 AM (GMT-7)


2busymom
Regular Member


Date Joined Nov 2006
Total Posts : 118
   Posted 6/22/2007 5:53 PM (GMT -7)   
Hey Vet,

Thank you for sharing. My first thought was anger at the doctors (we've had to deal with many such docs this year). My next thought was that you knew the ropes, so hopefully that made your dad's journey a little bit easier. How is yor mom holding up?

bec
husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA results 1/07 <0.01%


montee
Regular Member


Date Joined Mar 2007
Total Posts : 315
   Posted 6/25/2007 6:32 AM (GMT -7)   
Vet,
 
Here is a quote from a man who was given 2 years 10 years ago, he as gone through 2 bouts of chemo after being diagnosed with lymphoma, been through painful stem cell treatment and still is on the radio everyday.
 
"accept the diagnosis, defy the prognosis"
Woodrow Crowell
diagnosed sept 06
gleason 3+4=7, right lobe only
psa 4.7
RP Emory Atlanta December 2006
Path-negative margins, negative lymph nodes
negative seminal vesicles, multifocal perineural invasion, both lobes involved
40% gland involved
gleason 3+4=7
1st psa April 2007-<0.04
 6 Mos PSA <0.04


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 6/25/2007 3:27 PM (GMT -7)   
Hi Vet - thanks for sharing our story with all of us. It does help to see what others go through and a definite reminder for those of us with sons.
I hope your dad is responding well to HT and sorry he has to go through this.

Geeze - life just runs you over sometimes, doesn't it? But as you say, "I believe this story will have a happy ending". Me, too.

All the best to you & your Dad,
Susan

veteran1
Regular Member


Date Joined May 2007
Total Posts : 133
   Posted 6/26/2007 11:52 AM (GMT -7)   
Thank you for your comments. Yes, Bluebird writing about my journey is very healing. And bec, thanks for mentioning my parents. They still play golf in their late seventies. Montee that quote is very memorable...even for me.
And Susan, I do feel runover sometimes. That's when I pick myself up, look in the mirror, and have a good laugh...Hah

Thank you so much.

Vet

Rick Roma
Regular Member


Date Joined Jun 2007
Total Posts : 37
   Posted 6/27/2007 9:54 AM (GMT -7)   
GEEZZZZZZZZ..... I know I did much whining about my situation.. but in comparison to what you have been through... and still going through .... I could only pray to have your inner strength and determination.... you are a survivor. And you will triumph in the end.

Richard
There is a special church here nestled deep
in the forest.... a beautiful bell hangs at the very top.... it only stops ringing.  When you come through the forests for your voice takes its place....   Richard


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 11/9/2007 9:13 AM (GMT -7)   

Helping to keep Vet's Journey together!!

 

tongue   tongue tongue Quote from Vet’s new thread 11-9-07  Still Alive

 

It has been awhile since I last posted on the HW PCa Forum. I notice so many old friends and newcomers. I wanted to check-in and let you know that I am doing well and hope you are too.

 

I can remember my first frantic postings. Question after question. And the the answers were usually here. I did not always understand what you were telling me, but it felt so nice to know that other men and their loved ones would take the time to help me when I needed it most. You told me to do my homework and suggested books that would help me better understand this disease. I still refer to the many books I now have.

 

Most importantly, I learned patience, patience, patience. Our cancers are not instantly treated or cured. I went through the deflating experience of hormone therapy, popped pain pills after surgery and had a healthy dose of radiation. And along my journey, I met some knowledgeable, and very caring people whose shared experiences helped me get through it all. There were even some laughs along the way. I can remember running to the computer to announce a long absent erection. Not exactly something I would put in the local newspaper.

 

To those of you who are new to this site, I can only say welcome and stay tuned. Your journey is important to everyone here. We are all in this together. Your concerns are are in the hands of people who have experienced what you are going through and are willing to share their experiences with you.

 

Me? I am doing fine. Despite a 5 + 4 post-op Gleason and seminal vesicle involvement, I am still rolling zero's. And I was first diagnosed in December of 2005. I am 55 now and going strong. Looking forward to celebrating two cancer-free years.

 

I look forward to hearing from you. Let me know how you are doing. I miss you all. If you are new to this site, maybe I can try to answer a question or two.

 

Good Thoughts Always,

 

Vet

 

Excerpt from above!!!!!  I am still rolling zero's.

And I was first diagnosed in December of 2005. I am 55 now and going strong. Looking forward to celebrating two cancer-free years.  Surgery: 02/14/06

 

 

 

Dear Vet,

We are keeping you tucked close….

 

http://i206.photobucket.com/albums/bb179/mamabluebird1955/BluebirdStayClose.jpg

 

  Though you cannot always see the bird singing, if you listen with your heart,

you can always hear her song. 

 

 

Even when you are away for a while ~ I know you hear our song!!! 

Your posting is heartwarming…. Keeping you close each and every-day!

 

Hugs and special thoughts surround you!

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 :)

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