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TinFoilHat
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 9/15/2010 7:22 AM (GMT -6)   
I posted my first panicky entry a few weeks back, then lurked, then read, and read, and read some more.

I can’t decide if knowledge is power, or ignorance is bliss …

I’ve got a disease that may or may not kill me.

If it doesn’t kill me, the treatment:

May or may not cause p*ssing my pants for some period of time.

May or may not cause ED in varying degrees.

May cause my willie to end up shorter than it already is.

This sucks.

I want my old life back.

I need a support group (and a hug). :)
Jeff

Age: 49 (12/61)

PSAs: 12/08 - 1.8, 12/09 - 2.5, 6/10 - 3.9, 8/10 - 5.7

Biopsy 8/10: 14 samples, 5 positive, Gleason: 3 + 3

RP scheduled 9/23/2010

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 9/15/2010 7:41 AM (GMT -6)   
Hey Jeff

Here you go buddy! (((o)))

Really liked your quote: "If can't decide if knowledge is power or ignorance is bliss."
Here, I'll help you. This is the PCa world so the answer always is: "It Depends"

No real useful info beyond support and good feelings. But I think I am noticing a PCa cluster that should be investigated. There seems to be a disproportionately high number of Jeffs here.

Maybe we can hire Dewey, Cheetum, and Howe to start a class action suit.

Jeff (the leaking one)

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 9/15/2010 8:33 AM (GMT -6)   
That's the fate we all have when getting that first diagnosis. Maybe that's the cement that binds us together here, so much uncertainity, some many people in the same boat...
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, Path: pT2c, 110 gms., margins clear GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09- Uh-Oh, reoccurance?
ED continues: Bimix- .3ml or Trimix- .15ml

kbota
Regular Member


Date Joined Aug 2010
Total Posts : 486
   Posted 9/15/2010 8:38 AM (GMT -6)   
Since I'm stuck with this nasty 4+5=9, and since all things are relative, I wish my name was Jeff.

<snicker>

k

Jeff, with a G 6, you are in a much better position than most. And it appears that you have been monitoring things closely. G6 is not typically aggressive, so you're probably fine, and this will just be a blip on your life's radar. Please keep us posted.

Also, the skill levels at preserving those important bodily functions has improved much over recent years. You hear way more success stories than the contrary.

I'm about two months post op (open RRP), and I'm easily 99% continent today. However, I did lose both nerves, so ED will forever be an issue for me. But, I'd prefer to be a live guy worried about ED, than..........

You're a smart guy and you're doing the right things.

You are in our thoughts and prayers

Post Edited (kbota) : 9/15/2010 8:48:56 AM (GMT-6)


F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3780
   Posted 9/15/2010 8:42 AM (GMT -6)   

Jeff -- there seems to be a surfeit of "you're screwed no matter what you do" posts the past couple of weeks.  take a break from the board if you need to. i sure would understand. i have been contemplating the same thing actually.  

knowledge is power but a constant reminder of all the things that could go wrong is just simply borrowing trouble.

i do have a good support system in the real world.  last night i went to an illness in recovery meeting and the speaker just had robotic prostate surgery six months ago.  my friends and wife are very supportive and my dog loves me no matter what cool .

ed


age: 55
PSA on 12/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10

Post Edited (F8) : 9/15/2010 10:03:26 AM (GMT-6)


Putt
Regular Member


Date Joined Aug 2010
Total Posts : 154
   Posted 9/15/2010 9:06 AM (GMT -6)   
Jeff
I don't know where you are located, but you might check this site in order to locate a chapter of UsTOO in your area. UsTOO was created to help guys like us who are seeking reliable information from others in the same boat. At the group meetings, you will find a great bunch who are willing to discuss very personal issues that are often hard to talk about even with your own family members. I will be forever grateful for my Chapters encouragement and friendship during a very stressful beginning of my journey. Good luck.
 
 
PSA at Dx 105 at age 68, 4/04. ADT, RRP, 5/04. Gleason 4+5=9, Staged pT3c N0 MX, 3D rad, 40 treatments, 8/04. PSA 1/05 <0.01. ADT till 7/07. PSA 0.03 12/08, 0.07 4/09, 0.13 8/09, 0.19 12/09, 0.30 4/10, 8/10 0.71. Will start ADT3 after PSA reaches 1.2.

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7197
   Posted 9/15/2010 10:34 AM (GMT -6)   
Look buddy, quit complaining. If you don't like this PC, just return it.
 
Mel

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3634
   Posted 9/15/2010 11:00 AM (GMT -6)   
Hey Jeff, consider yourself LUCKY !! You have a Gleason 6 Cancer and a PSA of 5.6..That puts you at the top of the Partin tables. Your chances of dying of PC are less than 10%

I'm 68 and I underwent robotic surgery 12 days ago. I'm continent and virtually back to normal. Guys choosing radiation are getting equally good results.. It ain't 1975 anymore. Things have come a long, long way...

If you have not read "Surviving Prostate Cancer" by Dr. Pat Walsh now would be a good time to do so...And the best of luck to you!!
Age 68.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA age 66 9.0 DRE "normal", 2ed biopsy, negative, BPH, Proscar
PSA at age 67 4.5 DRE "normal"
PSA at age 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP performed Sept 3 2010

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2215
   Posted 9/15/2010 11:09 AM (GMT -6)   
It is easy for me to forget that there are many people who have had or still have PCa but there lives are quite normal and they dont come here to post. So not sure that your assumption that your screwed one way or the other is totally correct. Thanks for posting and keep us updated.
Michael 

rhb47
Regular Member


Date Joined Mar 2010
Total Posts : 208
   Posted 9/15/2010 11:14 AM (GMT -6)   
I love Mel's(compiler) answer....now if somebody will just tell me the return address.

Renee

P.S. I don't even want my money back !
Husband diagnosed 3/10
Age 56, PSA 4.7, free 7.6%

Biopsy 5 of 10 cores positve-all right side-25% to 57%
Gleason 6
DaVinci surgery with Dr. Vip Patel scheduled 8/9/10

Post Op: Gleason 3+4=7
Negative surgical margins and lymph nodes
No seminal vesicle and angiolymphaic invasion
perineural invasion present
Both nerve bundles spared
Cath out @1 week, totally pad free 2 weeks later

TinFoilHat
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 9/15/2010 11:19 AM (GMT -6)   
rhb47 said...
P.S. I don't even want my money back !


I'd even pay the restocking fee!

Thanks everyone. I'll be lurking till D-Day, then I'll give an update when possible.
Jeff

Age: 49 (09/61)

PSAs: 12/08 - 1.8, 12/09 - 2.5, 6/10 - 3.9, 8/10 - 5.7

Biopsy 8/10: 14 samples, 5 positive, Gleason: 3 + 3

RP scheduled 9/23/2010

Highwayman
Regular Member


Date Joined Sep 2010
Total Posts : 148
   Posted 9/15/2010 12:43 PM (GMT -6)   
Jeff,
best of luck. I talk to the surgeon tommorrow.
Yeah, I was thinking about asking for a refund on my tratorous prostate- but you see I have these wonderful kids....
Keep a positive attitude. I do, I am positive I have an attitude.
Mike
Age 48 w/diagnosed
10/25/06 PSA 3.0
11/13/06 PSA 3.8
11/13/06 PSA FREE 0.5
11/13/06 PSA % FREE 13.2
10/25/07 PSA 3.4
12/18/07 Biopsy-neg
6/2008 PSA 3.5
1/7/09 PSA 4.6
6/18/09 psa 5.8
2/9/10 psa 8.7
5/13/10 psa 10.5
7/19/10 PSA 10.8
8/19/2010 3rd Needle core biopsy- single focus of prostatic adenocarcinoma, Gleason Grade 3+3=6, Tumor involves one of eight cores -2%, Prostate 65 (big)

anxiety out the roof
Regular Member


Date Joined Aug 2010
Total Posts : 111
   Posted 9/15/2010 2:47 PM (GMT -6)   
F8 said...

Jeff -- there seems to be a surfeit of "you're screwed no matter what you do" posts the past couple of weeks.  take a break from the board if you need to. i sure would understand. i have been contemplating the same thing actually. 

 

 I have the same feeling about the " your screwed no matter what you do." I would like to hear some stories that have happy endings after being diagnosed with PCa.

 


TinFoilHat
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 9/15/2010 3:33 PM (GMT -6)   
I guess "happy endings" are relative.

I'm pretty new at this, but I suspect once you get a dx like this, your life changes. Period.

I think this site will be helpful -- and thank you all for being here.
Jeff

Age: 49 (09/61)

PSAs: 12/08 - 1.8, 12/09 - 2.5, 6/10 - 3.9, 8/10 - 5.7

Biopsy 8/10: 14 samples, 5 positive, Gleason: 3 + 3

RP scheduled 9/23/2010

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3634
   Posted 9/15/2010 5:21 PM (GMT -6)   
Hey tinfoil, on D-2, the start of bowel prep, I was instructed to drink two (2) bottles of Magnesium Citrate, a POWERFUL laxative, then start a liquids only diet...My friend, that's the worst part of the whole deal...It will be a week before you poop right again...It's always darkest just before dawn, you will be fine, a walk in the park...

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/15/2010 5:44 PM (GMT -6)   
Anxiety out the roof said:

"I have the same feeling about the " your screwed no matter what you do." I would like to hear some stories that have happy endings after being diagnosed with PCa."

Anxiety and Tin Foil,
I know the feeling of being diagnosed with prostate cancer all too well. It was about 4 years ago for me. I have to say that when I see the new guys coming in here that the first thing that crosses my mind is that that was me. I was a young guy with seemingly nowhere to run. I cried with my wife and feared the worst ~ multiple times. I had no idea what the future would hold.

There is no doubt that a diagnosis of cancer will change your life, and this website is about guys and their loved ones getting together to find hope and for the most part a life without cancer. Some do better than others and most do very well.

I mention it because, while it didn't quite turn out as I had hoped, I did find my own peace with this stupid disease. My wife and I are closer than ever, I appreciate the littles things more than ever, and I know that while this was not my plan, I am very happy that in spite of having advanced prostate cancer life goes on. One friend of mine who continually shows me the courage and inspiration that I could only hope for, he revealed on a radio show his bout with advanced prostate cancer was not going well. The show host, Dennis Miller, was obviously touched. He asked my friend "how do you deal with this?" and David E said "Well you know, you get up in the morning, you put your pants on, and you get on with your life". Miller was taken back and you could hear it in his voice.

Well that's me today. If my advanced disease is in full remission, then why can't I just be happy with where I am? After all David still is in the fight, why would I ever let this disease take my happiness away?

In time you will feel the same way. It's still early in the game for you guys. The stats look favorable for both of you.

Don't let this thing get you too down. It's ok to feel like the road ahead is rocky, but it is not anywhere near the end of anything including your peace or your bright futures.

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
RALP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

Post Edited (TC-LasVegas) : 9/15/2010 5:47:50 PM (GMT-6)


coxjajb
Regular Member


Date Joined Nov 2008
Total Posts : 184
   Posted 9/15/2010 7:36 PM (GMT -6)   
There are probably more happy endings than we all know. If things are going well, many will not hang around a forum looking for support. I'm a Corvette nut and frequent various car forums. It's easy to feel that every Corvette on the street is always in need of repair. Fact is, only those looking for support or information are on the forum. I understand there are brothers out there struggling with PC issues. Keep the faith and know that there are happy endings as well. I'm an example of a happy ending. I have dry pants and no ED issues. I just renewed my membership in the Zero club 2 years post op.
Age 51 @ DX
Pre - Op PSA, 4.3
Gleason 3+4=7
Stage T1C
da Vinci Prostatectomy 8/1/08
No issues with incontinence since day 1 after catheter removal
Mild ED for about 10 months. Levitra worked well for me. No ED at one year.
PSA 0.00 at 24 months post op

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 9/15/2010 7:46 PM (GMT -6)   
Knowledge is power or ignorance is a bliss? Well I have been on both sides of that coin. At first I wanted to know everything, however, I, like most found myself migrating toward the negative which in turn left me negative. I then decided to only seek the positive and honestly there are plenty of reasons to think positive. I mean come on lets think about this, yes I am a stage 4 prostate cancer fighter, however I can still work fulltime and I have a job, I can still bike and swim and I do, I can basically fill my day with great activities without worrying about where and what my cancer is going to do. Now back to the question, yes at first knowledge was power, now 3 years later, for me, ignorance is a bliss. Heck today is the greatest day of life so I am going to get all I can out of it.

thanks for the post

peace to you
Dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
I was on Lupron, Casodex, and Avodart for two years with my last shot March 2009. I am currently (7-22-2010) not on any medication.
My Oncology hospital is The Cancer Treatment Center of America in Zion IL
PSA July of 2007 was 16.4
PSA May of 2008 was.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01
PSA OCt 15th 2009 is .11
PSA Jan 15th 2010 is .13
PSA April 16th of 2010 is .16
PSA July 22nd of 2010 is .71
Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4089
   Posted 9/15/2010 9:02 PM (GMT -6)   
Jeff. I guess we will call you the "Young Jeff" I Worried Guy is "the leaking one" and I am Cajun Jeff. Let me know where you return you PC to. I vote on returning mine as well.

Best of luck with you decision. We are all here to support each other.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2840
   Posted 9/15/2010 9:21 PM (GMT -6)   
Young Jeff -
I run into happy endings on a regular basis at my work.

I wear my prostate awareness ribbon and talk about my artwork and fundraising for prostate cancer.

In the last month I have spoke with/ heard of, the following:
1-bone mets cancer survivor - 13 years - "they gave me 4 months and I'm still here" - his quote
2-PCa survivor - 3 years - "radiation is a breeze" - his quote
3-PCa survivor - 10 years - currently on HT
4-PCa survivor - 15 years - he has a very proud wife
5-Colon Cancer survivor - Catholic Priest- 6 months since end of radiation (still very fatiqued) - but asked about ED issues concerns relating to one of his PCa flock

- and over the summer , a number of women and children who spoke of their husbands/ fathers , surviving PCa and treatment , and passing on due to other diseases or old age....

- you can make your own happy ending -> get the best information for you - get the best doctor(s) for you - get the best treatment to suit you -
-and never give up

YOU ARE WORTH IT !

:-)
BRONSON

Post Edited (tatt2man) : 9/16/2010 6:49:40 AM (GMT-6)


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2211
   Posted 9/16/2010 12:03 AM (GMT -6)   
We are all tackling our PCa lives in different ways, but the "take a break from the board" remark was interesting given I've just taken a break myself.

At the beginning life seems to be 100% about this terrible problem you have been confronted with. It hits you every morning about 5 to 10 seconds after you wake up and you fall asleep at night thinking about it.
Yes you do need to find out answers to your questions, but it is also a good idea for your general well-being not to overload yourself with either worries or information.

Try doing other stuff every day to overload your head or body in such a way as to push the PCa to the back, may sound impossible but I found I could do it. One of the first ways I achieved it was to simply numb my brain by playing solitaire on my laptop non-stop. Cycling, having friends round, going to the movies, listen to (loud) music.

Yes the guys and galls at HW can offer support etc, but I think it can't be denied that if you don't watch out you start worrying too much about their problems too.

Just off to distract myself with compiling a massive database about my ancestors.

So even if you don't take a complete break from HW do what seems like the wrong thing to do at such a time and ration the amount of time you devote to PCa.

Alf
Born Jun ‘60
Apr 09 PSA 8.6
DRE neg
Biop 2 of 12 pos
Gleason 3+3
29 Jul 09 DaVinci AVL-NKI Amsterdam
6 Aug 09 Cath out
PostOp Gleason 3+4 Bladder neck & Left SVI -T3b
No perin’l No vasc invasion Clear margins
Dry at night
21 Sep 09 No pads daytime
17 Nov 09 PSA 0.1
17 Mar 10 PSA 0.4 sent to RT
13 Apr 10 CT
28 Apr 10 start RT 66Gy
11 Jun 10 end RT
Tired
BMs weird
14 Sep 10 PSA <0.1
Erections OK

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 9/16/2010 7:08 AM (GMT -6)   
I will post these two stories on PCa that are far looking very successful like, from standard cases of overall PCa treatments on living people:

Dr. Fred Lee (longest living..uncured/mets patient) disease diagnosed 27 yrs. ago, 25 yrs. ago known failure to be cured, alive at age 80 still practicing medicine:
www.rochesterurology.urologydomain.com/images/uploaded/rochesterurology/drleestory.cfm
(some other docs laugh at his drug choice or call it a death sentence or other things..fyi) (the uro doc Dr. Bob B. whom co-wrote his biography article with Dr. Lee does believe in everything Dr. Lee does, maybe he learned at a different school-LOL) smilewinkgrin

Next one is bizzaro friend in Michigan Rick K. (diagnosed 1995-96 era) psa 11.0 biopsies found 2 cores (2+3=5) back then, upgrading Gleason to today say 6's. He did the quantum leap of Dr. Leibowitz drug protocol (no invasive treatments). ADT 3 drugs 13 months, quit, stay on proscar to monitor. The shortened updated version is this: recently went to uro-doc(Dr.Bob B. as above article) for rebiopsies he sent him instead to Dr. Fred Lee for color doppler sonography biopsies, two suspecious blood flow areas amongest biopsies= patholgy currently finds no PCa...his psa is low and normal or lower than normal for a man who still has a working prostate. He has normalcy as a man, no issues with e.d. and continency. He still could chose any treatment for PCa if and when he believes he needs it, his choice. People laugh at this protocol and says it is INSANE (especially uro docs slam this protocol), now it may not work this well in higher grades of PCa (but is selected by patients and still useful). So, Rick K is he Crazy or Wise???  Probably is brave, especially back in 1995 ADT3 was not well known enough back then.

He currently has  15 yrs. and continuing of normalcy and new stuff is coming down the line all the time, will he laugh last??? I don't know...the story is in process...no uro-doc would say it is worth a hill of beans is my guess, that alone is worth a few laughs.

Post Edited (zufus) : 9/16/2010 7:23:52 AM (GMT-6)

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