I am so Jealous

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Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3218
   Posted 12/12/2008 7:14 PM (GMT -6)   
I come to hw many times a day. I come to post, to encourage, and to be encouraged. I come here for the good people and the positive outlook. Sometimes when I come here I get really angry. I want to be part of the zero club. I want to have surgery and maybe have the dribbles and the limpys for a while but be able to have some comfort that my psa is undetectable. I am so pissed off that I am 45 years old and have a hard time planning for my future. I dont even know if I should keep putting money into my 401k. What is the point. You dont find sites that say (bone and soft tissue matasticies and still living after 30 years.) God who cares if I ever have an erection again. Who cares if I wet my pants. Please let me be here to wet my pants.  Doctors talk about weeks and months. Rarely do they say years. I was just telling tony how I dont let it get to me and here I am and I cant even see the computer screen. I want to scream. You are so lucky. You caught it early. your going to live a long time. mad mad I want to be one of you. I,m sorry I dont mean to be a baby. I just wish so badly to be able to be cured. I just wish I had that posibility. I just returned from a cat scan and they never tell you anything unless there is nothing to worry about and then they say it looked good. They didnt tell me anything. I'm going to drink a beer and cry for a while. Thanks for listening Todd
 
 P.S.I am so happy and thankful each time one of you posts a zero. I just want to be one of you. I hope you understand


dx:06/03/06
Age at dx: 42 age now 45
Treated for sciatic nerve pain 6 months prior to dx.
Heavy amount of blood in urine Unable to urinate 
Lung x-ray for pnumonia revealed multiple lesions in each lung
P.S.A. at time of dx. 3216.14
Began lupron and casodex
Cat scan showed large mass in the pelvic area affecting the bladder multiple nodules in both lungs and lymph node envolvement.
Bone scan revealed possible bone involvment in the pelvic area
Biopsy 12 of 12 cores positive gleason 3+4=7
P.S.A.s since lupron 2946, 1274, 532, 5.01 1.23, .09
Begining jan 08 psa .o9, .25, .44, .86, .73, 1.34, 1.49. Doubling time is a little over 3 months

Post Edited (living1963) : 12/12/2008 5:43:54 PM (GMT-7)


Sam Benton
Regular Member


Date Joined Dec 2008
Total Posts : 35
   Posted 12/12/2008 8:19 PM (GMT -6)   
Last posting I remember seeing from you, said you fired your doc....right? Just wondering if you found a new one at this point? And if so how you feel about the him or her?
Keep the faith brother,
Sam

divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 12/12/2008 8:26 PM (GMT -6)   
Dear Todd, I hear you. We were in NY yesterday with the urologist....The appointments never solve anything...you just go, and they spend a few minutes listening, but the doctors are busy and rushed, and they don't really know what it is like. The results come back in a week or so in the mail. No doctor calls and says anything...at least we have never had that...You are just left to your own defenses... I understand what you are saying...but, you have your youth on your side. You are strong and you will overcome. Pete had his first psa in 8 months today. I know it wont be a zero, (it was .59 in April...), but we are hoping it won't go up...

Keep your hope alive, and I believe in the Pom! (Pomegrante juice)....Diane
Husband Pete
dx Jan 2001 age 67 gleason 4 + 3 PSA 16.5
seed implant and conformal radiation Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06
Fistula operation 2/07 MSK
Many cystoscopies and ER visits with strictures
catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/07
AUS Operation at MSK Sept 8. Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 12/12/2008 8:47 PM (GMT -6)   

Dear living,

In my opinion you have every right to feel the way that you do.  You are not a baby.  You are quite reasonably worried sick and pissed off.  Nobody blames you.  At least I don't.  So far it seems that I am more fortunate than you.  I have done nothing to deserve being so lucky.  I am not Mr. Wonderful.  Just dumb a++ lucky. 

I wish I had words to help.  Words to warm your heart.  Words to comfort you in your sorrow.  Words to give you hope.  Words to ease your fear. 

I don't hang around here much anymore.  I can't stand the emotion, but your post has touched my heart and I feel for you Brother.  I too, can barely see the screen.

Bill


August of 2006, PSA up to 4.2 from 2.7 one year ago. 
October free and total PSA 12% free and 5.0 total.
A month, or so later, 4.7.
Late in the year decide on Image Guided IMRT.
Begin 43 treatments on January 23, 2007 and finish on March 23.
 
Wow, almost two years behind.  I had a typical radiation bounce that
scared me, but it seems to be ok.  PSA is about 1.0 which is ok for
a rad guy at this stage of the game.
 
Got my FAA medical certificate back four months after starting my
treatment.  It's still a First Class, just jumping through a few hoops.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/12/2008 9:31 PM (GMT -6)   

Hi Todd,
Geez, what a difference a couple of hours make!  But it's ok to feel down, you are such a positive guy, you won't be down for long.  about that 401k? Keep saving.  There is some promising trials going on right now.  So keep the faith.  It was nice talking with you on your ride home.  You call any time you like. 

Cheers.

Tony 


Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 12/12/2008 10:29 PM (GMT -6)   
Todd, what can I say to ease your pain?  Maybe that I feel with you, I understand your feelings and the pain/rage/disappointment inside you.  I can only offer my understanding and a shoulder when you need it.  Keep hope each day that this will be day that things change for the better. 

James C.
Co-Moderator- Prostate Cancer Forum
Age 61
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
Present- 1 year: ED- Viagra, pump continues, no response- Trimix ..35ml x 2 weekly continues
Post Surgery PSA's: 3 mts-.04, 6 mts.-.04, 9 mts.-.04, 1 Year-.02.


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 12/12/2008 11:22 PM (GMT -6)   
Todd you do have a right to be down, but not to stay down. I think one of the best ways we personally have to combat this disease is a positive emotional and spiritual attitude. Just the fact that you expressed your emotions is healthy and indicates to me that you are ready to start living with cancer not dying from cancer. Just remember my friend, things sometimes have to fall apart before they can fall into place. By your own writing it looks to me like your emotions were falling apart, now lets put them into place. Todd I do not know you nor do you know me, however I can say with out a shadow of a doubt that I love and care about you.
Listen keep the communication open, and if you get time send me an email. I would like to chat further.

peace and love
Dale
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
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
cancer in 4 of 6 cores
92%
80%
37%
28%
 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 12/12/2008 11:48 PM (GMT -6)   
Todd,

I'm sorry you're feeling down today. It is normal and you have the right to days like this so say whatever you need to say and know that if you close your eyes and think of us...we're all giving you a great big cyber hug tonight.

Swim
 


me too
Regular Member


Date Joined Nov 2008
Total Posts : 20
   Posted 12/13/2008 12:22 AM (GMT -6)   
Todd,
I'm Pat I'm new here I want to say be strong not sure it this going to help but remember you have pc it don't have you. This is what my wonderful wife would say. I now draw my strenght from her She was born with CF and to live only six months. she lived 40 more years. so please Todd fight , and keep fighting remember you have PC PC DOES not have you keep the faith , keep writing get mad, get sad, keep walking forward Pat
Patrick J, Brick


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 12/13/2008 2:10 AM (GMT -6)   
Todd,
Sorry to hear you are feeling down but rage away...........you have every right to do so and shouting at the world can work wonders on the frustration of continually having to battle and fight. You are entitled to feel overwhelmed at times but tough as it is, never submit......trials and research develop continually with constant little successes in the battle with PCa occurring every day in labs all over the world. And you are right.........so what if we leak a little and are "limpy"............there are far more important issues in life. Every time I post a zero or see another zero posted I feel a twinge of guilt, for while rejoicing in those number, it causes me to think of our members who are having a tougher battle. But, no matter the stage of our disease, we are all valuable people here and each and every member's experience has much to contribute for the benefit of all. I'll be thinking of you tonight and as I down a couple of beers, you and your battle will be in my thoughts as well as the thoughts of all your supporters and mates here at Healingwell.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)

Post Edited (BillyMac) : 12/13/2008 5:32:24 AM (GMT-7)


Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3218
   Posted 12/13/2008 9:24 AM (GMT -6)   
Thank you to all of you. I am doing much better this morning. Last night amanda and I and our daughter cuddled on the couch and watched sappy Christmas movies and cried. lol. It was great. clarence got his wings, melisse gilbert found Christmas love and we used a box of tissue. What could be bettr. We fell asleep on the couch. THESE PRECIOUS MOMENTS ARE WHY I FIGHT AND WHY i WILL NEVER GIVE UP.I am typing in the dark. It is 6 am. I slept well.. I mostly do pretty good but every now and then it gets dark. I meant to just post about the cat scan last night. I saw all the new zeros and was happy and then started feeling sorry formyself. I love my new doctor. He came out of retirement to treat me. He is also fightingpca. I trust him and he trustsme. So far in this journey I have been spared doing scans and lots of blood work. Yesterday made it feel far too real. THANK YOU. ALL OF YOU ONCE AGAIN. Todd
dx:06/03/06
Age at dx: 42 age now 45
Treated for sciatic nerve pain 6 months prior to dx.
Heavy amount of blood in urine Unable to urinate 
Lung x-ray for pnumonia revealed multiple lesions in each lung
P.S.A. at time of dx. 3216.14
Began lupron and casodex
Cat scan showed large mass in the pelvic area affecting the bladder multiple nodules in both lungs and lymph node envolvement.
Bone scan revealed possible bone involvment in the pelvic area
Biopsy 12 of 12 cores positive gleason 3+4=7
P.S.A.s since lupron 2946, 1274, 532, 5.01 1.23, .09
Begining jan 08 psa .o9, .25, .44, .86, .73, 1.34, 1.49. Doubling time is a little over 3 months


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 12/13/2008 9:37 AM (GMT -6)   
glad you are feeling better Todd and please keep sharing those emotions with us. We love you man.

peace to you
Dale
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
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
cancer in 4 of 6 cores
92%
80%
37%
28%
 


califguy
Regular Member


Date Joined Sep 2008
Total Posts : 72
   Posted 12/13/2008 1:19 PM (GMT -6)   

Glad you are doing better today. At this point I have little to worry about, but I too, suddenly will have days that are just hard to keep from crying. My wife is always upbeat and says not to worry! Ha! I am one of the world's best worriers so that is not easy to do.....

Kept venting here. We understand! I see you speak with Tony. He certainly is an inspiration to all of us. The ones of us that have been there....done that.... need to support each other. I often find at work when someone asks where I have been and I say PCa surgery, they often will respond with "Oh that kind is no big deal." Well I realize it may be better than others, but it definitely is a big deal.

If you ever need another buddy to talk to, drop me an email and I'll get you a phone number. I don't have the experience Tony and some of the rest have, but I do have a compassionate ear to lend.

Blessing to you for a peaceful and healing weekend and a happy holiday season,

Bill


Don't get discouraged!!
CalifGuy
 
Diagnosed Feb 2008  54 years old
3+4=7 gleason
7.5 PSA
4 out of 20 biopsies were cancerous
daVinci Robotic surgery July 24, 2008
Univ of Calif San Francisco Med Center  Dr Peter Carroll
In hospital 2 nights altho I had option of leaving the next day but stayed due to distance home.
Contained in prostate, not spread
Six weeks post surgery PSA less than .01


jerseycity
Regular Member


Date Joined Nov 2008
Total Posts : 123
   Posted 12/13/2008 1:44 PM (GMT -6)   
 
WOW! I am touched by your honesty and strength. Here I am complaining about going thru 4 pads a day. You have put me in a place I need to be by your words of anguish. At some time in all of our lives we get a punch in the face. It hurts. Also there is a time when we are given hope and love. All I can do is send you both of these. Carry on brother.

Rich man in a poor man's shirt


Sam Benton
Regular Member


Date Joined Dec 2008
Total Posts : 35
   Posted 12/13/2008 5:39 PM (GMT -6)   
Todd,
I am really glad to hear you found a doctor you trust and are comfortble with. Your situation is tough enough. Sounds like you have a great family, keep them close.

Take care,
Sam

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/13/2008 6:39 PM (GMT -6)   
living,

you make me feel very guilty about complaining about my own situation. i feel for you in every possible way. i wish you only the best of care in the days and weeks ahead. i will remember your story and situation for a long time. i shared it with my wife just last night to put things into their proper perspective. hang in there, brother.

david
Age 56, 56 at DX
 
PSA 2007 5.8
PSA 9-2008 14.9
 
3rd Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
 
Open RP surgery completed on Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon,
Non-nerving sparing, 4 days in hospital, staples removed 11/24/8
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes. Left lobe: infiltrating tumor miscroscopically appears to extend to marked left posterior margin


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 12/14/2008 9:53 PM (GMT -6)   
Hey Living, Sorry you were having a bad day. Just try to keep your head up. I can only imagine how it is to be dealing with the hand you were dealt. It does make the ED and incontinance such a minor issue.
Keep up the fight,
KW
    43 at Dx and Surgery (RRP)
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).
    July 30, PSA 0.00.
    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey
    Oct. 6th, 2008 - AUS Activation by Dr. Morey
     


Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3218
   Posted 12/15/2008 11:31 AM (GMT -6)   
Once again I want to thank all my friends here at HW. Its monday and the weekend made a huge difference in my mind set. I am currently waiting for the results of my cat scan. It will be okay I think. I get a bone scan on the 24th. It will be okay too I think. Christmas is coming and I cant wait to see my family. I had a revelation this morning that the only reason I have been doing well emotionally is because the Lord is carrying me through this. When I started getting a little cocky about cruising through it just fine He let me walk awhile on my own. I will try not to let that happen again. Thank you all for taking his place and carring me for a ways. I love you all. Todd

dx:06/03/06
Age at dx: 42 age now 45
Treated for sciatic nerve pain 6 months prior to dx.
Heavy amount of blood in urine Unable to urinate 
Lung x-ray for pnumonia revealed multiple lesions in each lung
P.S.A. at time of dx. 3216.14
Began lupron and casodex
Cat scan showed large mass in the pelvic area affecting the bladder multiple nodules in both lungs and lymph node envolvement.
Bone scan revealed possible bone involvment in the pelvic area
Biopsy 12 of 12 cores positive gleason 3+4=7
P.S.A.s since lupron 2946, 1274, 532, 5.01 1.23, .09
Begining jan 08 psa .o9, .25, .44, .86, .73, 1.34, 1.49. Doubling time is a little over 3 months

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