Wanting to know and not wanting to know

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compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7213
   Posted 11/12/2009 12:06 AM (GMT -6)   
I am currently in that uncomfortable position of awaiting test results. In my case, it is the new PCA-3 test, which will tell me with a great deal of accuracy whether or not I likely have cancer. If yes, then the nightmare continues and it is biopsy time. If no, I can relax for a few months.
 
I expect to hear the result on Monday but it could be later this week or later than Monday. I have amazing mixed emotions. I don;t want to ruin my weekend (grandkids visiting), but yet I am anxious and I want to know.
 
Do any of you experience this nervousness: wanting to know but not wanting to know the results of a test (DREAD!).
 
Mel

califguy
Regular Member


Date Joined Sep 2008
Total Posts : 72
   Posted 11/12/2009 12:24 AM (GMT -6)   
Yes, yes, yes. Everytime I have a PSA test since my surgery, I have some apprehension. Sometimes it is a lot, other times not as much. Is getting some better with repeated tests all showing OK. But the first one especially was just as you describe.
 
Before I was diagnosed and had surgery, I didn't want to know. Now I would say I would prefer to know quickly. Instead of the dreading the news, I am anxious to know so I can take action.
Being informed is the best line of defense a person can have. So learn all you can about this. If you don't have it, then the info you learn will help you stay well. You can learn healthy meals, learn what foods are high in antioxidents, what exercise program would be good, etc.
 
Keep us informed. We are all here to help.
 
 

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
Five month PSA less than 0.1  Lab did wrong type of PSA test so this test was not as accurate.
Eight Month PSA less than .01  Yeah!!!!1


clearwatercowboy
Regular Member


Date Joined Oct 2009
Total Posts : 135
   Posted 11/12/2009 1:21 AM (GMT -6)   
Most of us share your anxiety over this issue. I remember dreading the call from my Uro in Idaho when the second biopsy results were available. I remember, ( it was March 2009) that I was alone when he called on the phone, and when the news hit me that I did have adenocarcinoma, it was like a punch to the nose. I opened a bottle of Pendleton Bourbon, and waited for my wife to get home from work.
And now, I have some apprehension whenever I await the results of my post -op PSA's. I'm not sure that feeling will ever go away.
But, if you have to join this club, know that you are welcomed, and that there are so many on here that will provide you with support and loads of good, useable information.

We'll keep our fingers crossed for you.
Dallas
RRP May 04, 2009
Pre-op Gleason 6
Post-op Gleason 7


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 11/12/2009 7:20 AM (GMT -6)   
The anxiety and ambivalence about knowing is perfectly natural. We've all been there. Limbo is often said to be worse than hell itself. PSA anxiety is something most of us experience every time we have our test.

If it is positive, you will find lots of support. open yourself to others and you will find the connections life changing. Take it one day at a time and try to resist running ahead of the whole process with all the 'what-ifs' that crowd into your mind constantly.

Speaking just for myself, there are many, many worse things that could happen in my life than getting PCa. Not fun, some really rough paddling, but at the other end, I've found myself a better husband, father and friend because of it. I'm one of the lucky ones. But you need to know there are millions of lucky ones out there who've come through it. Hang around. Welcome
Paul
46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
One year PSA - undectable!

ED Website: www.FrankTalk.org - frank discussions of Erectile Dysfunction - check it out.


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4835
   Posted 11/12/2009 7:22 AM (GMT -6)   
Yep. The anxiety doesn't go away as far as I can tell. I get the results of my (early) 18th month psa next Thursday.
 
I like to think I'll continue to get more good news - but you don't know till you get the results.
Age 54   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/12/2009 9:17 AM (GMT -6)   
Mel,

You describe one of the most common reported ailments here among the men. You have your pre-dx anixety, you have your dx anixety, you have your pre-treatment anixety, then your treatment anixety, your post treatment anixety, your recovery anxiety, and fianlly, every psa test after - yes anxiety too. We all feel it to one degree or the other. Best thing to do is just deal with one piece of the puzzle at the time and not allow yourself to become overcome by the whole package.

In your case, you are waiting the results of this test. Keep yourself ,mind mostly, busy doing something you like or enjoy until you get the resulst. For all the worry and fretting, it can also come back showing that everything is fine.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


reachout
Veteran Member


Date Joined May 2009
Total Posts : 725
   Posted 11/12/2009 9:24 AM (GMT -6)   
Yep, been there. It's called living with uncertainty, something I'm not very good at. I just had to try to put it out of my mind by doing whatever activities I could, even cutting grass helped for 30 minutes or so. Good luck with your results.
Age 64 yrs
DX 5/2009
8 out of 12 cores positive
PSA 5.6
Gleason Score 3+4=7
Stage T2a
Da Vinci Surgery 08/07/2009
Upgrade Gleanson Score 4+3=7
Stage pT2c
Neg Margins and Nodes
Extracapsular extension noted but neg Extraprostatic Extention
Dry immediately
First PSA 11/3/09 <0.1


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2216
   Posted 11/12/2009 2:22 PM (GMT -6)   
Hi Mel,



I had my first post-op PSA test two days ago and have the appointment to get the results on Tuesday, so I am with you on the "how to cope with the wait" aspect.

I am doing almost anything to keep my brain occupied and thus distracted. Spent today writing up my opinion of a thirty-page report about a ten-year maintenance plan I've been sent for my appartment building. I also had a long cycle ride with a camera taking photographs of what is left of the Autumn leafs. One of my sisters knows about this sort of wait and sent me some complex engineering Lego to play with! And I must have played minesweeper once every hour for the last week.



Now my wife has taken a day off on Tuesday to keep me company when i go to the appointment. Firstly so I donl;t have to manage alone and secondly so that she can hear it at the same time and first hand and not have to be waiting anxiopusly herself either.



Also for Clearwatercowboy especially, my hospital refuses to divulge any test results on the phone regardless of whether they are good or bad and insists on you having an appointment to be able to have a far more controlled atmosphere for dealing with this so difficult of conversations.



And I was thinking about enjoying a nice Scotch today. But Í just seem to have stopped drinking without really trying.



I also blame any tears in my eyes on the ten shallots I cut up this evening



Alfred

Carlos
Regular Member


Date Joined Nov 2009
Total Posts : 486
   Posted 11/12/2009 2:42 PM (GMT -6)   
Mel,
 
The good news is that anxiety seems to wane with time.  I have several friends who are 6 and 7 years post op and their anxiety levels seem very low.  I find the HW forum very informative but sometimes I think it adds to my anxiety.  For example, Tony and John T. posted some cautionary comments about men with Gleason grade 5 cells.  Innocent enough, but my brain recorded it as meaning I may already have a foot in the grave.  I just have to laugh at myself sometimes.
 
Carlos
Diagnosed 2/2008 at age 71, PSA 9.1, Gleason 8 (5+3)and stage T1c.  CT and bone scan neg.  Robotic surgery 5/2008.   All surfaces of resection, SV and lymph nodes were neg.  Staged pT2c, Gleason sum 8 (5+3).  PSA <0.1 at 14 months.


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 11/12/2009 4:04 PM (GMT -6)   
Mel, you wouldn't be human if you didn't worry. The only doctors with patients who don't worry are vets.

What I tell myself is that the test results aren't THE thing. The thing is do I, or do I not, have prostate cancer cells in my body. The test makes no difference. The results make no difference. The only thing that matters is, are they there, or not. Then, if they are there is it better to know, or not know? Answer, I want to know. So, I head into test result day knowing there is only good news. If I have cancer cells, it's beyond great news that we know! If I don't have cancer cells, then that's good news too.

A mental game? Of course, but it's the way I cope.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
Oct 1st 09 -- dry at night, during day some stress issues, but better every week. 
Feel free to email me at:  sheldonprostate@yahoo.com    


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 11/12/2009 4:24 PM (GMT -6)   
Mel Compiler,

Waiting for results makes me so nervous I pee my pants. Then again, everything makes me pee my pants. Eating, walking, breathing...

When I consider the alternative, I'd rather have a warm wet spot on my crotch pants than a clean pressed suit on my body.

Jeff

So,... what kind are you? Fortran IV, WATFOR, ALGOL, COBOL, BAL, PL/1, C, MC6800...?
Careful now. Your answer will date you.
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/17 2 months: Still 3 pads per day.
10/31 14 weeks: Still 3 pads per day. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/12/2009 4:33 PM (GMT -6)   
Back in the day, I was a king among programmers in both COBOL and DIBOL (Digital/DEC's version). Dont think my brain could take all that coding work anymore, lol.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 11/12/2009 5:19 PM (GMT -6)   
David,

open INPUT Hard
....READ Hard
IF Hard = Yes
.....PERFORM ACT 3 TIMES
.....END-PERFORM
....ELSE
.....PERFORM VED 2 TIMES
END-IF

I'll leave it to you to write the ACT and VED subroutines.
Jeff Too

Post Edited (Worried Guy) : 11/12/2009 3:22:36 PM (GMT-7)


sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 11/12/2009 7:38 PM (GMT -6)   
It gets better over time....I'm 3 1/2 years out (look at my numbers below--they REALLY sucked!). I used to feel the nerves about a moth before my 6 month follow up. Just had one yesterday (all good), and I really only got butterfilies a couple of hours before. I guess time heals all wounds (And if any of you are in sales, REMEMBER: time wounds all deals!!!)

Good luck!
Sterd82
Age 49 - pre-surgery PSA 39 (at age 45)
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sessions of IMRT Ended Feb 1, 2007
PSA as of May 25, 2007 undetectable
PSA as of November 29, 2007 undetectable
PSA as of May 14, 2008 undetectable
PSA as of November 25, 2008 undetectable
PSA as of May 22, 2009 undetectable


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7213
   Posted 11/12/2009 8:20 PM (GMT -6)   

Thanks for your responses. Jeff-- FYI--FORTRAN IV. Yes, that dates me.

Just to elaborate on my comments: As of now, I have no results yet. I peed in the cup on Monday and they said about a week for this PCA-3 test. Anyway, it was left unclear on how the results will be gleaned. The notes just said "will call." Does that mean they call me? Or, do I call them? Or, will the tests be called in to the doctor who would then call or maybe even mail me the results? Anyway, we know that is really no big deal. I can call them, for crying out loud. But I decided to wait and if I don;t hear from them Thursday of next week, I'll call. Why? Because next week is final exam week and I should have my grades and end-of-term stuff all done by Thursday (I am a University Professor). Frankly, I don't want bad news messing me up!

 

Mel

 


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7213
   Posted 11/12/2009 10:45 PM (GMT -6)   

Ohio:

Yes, of course I can call them. You are missing my point. I have no qualms about calling them as far as protocol is concerned. I am choosing not to as per my subject title!

 

Mel

 


wesd40
Regular Member


Date Joined Sep 2009
Total Posts : 41
   Posted 11/12/2009 10:55 PM (GMT -6)   
I had daVinci surgery on Sept.17th. After the post op path report my surgeon told me its 50/50 as to whether i still have some cancer. my first post op psa test is till a month away and I cannot help but think of it constantly if only a little in the back of my mind. Yes, I know whta it is like to be anxious for test results as do lots of us here, Good luck my friend. I am 51. Post op gleason 7.Wes

Dilbert61
Regular Member


Date Joined Nov 2009
Total Posts : 21
   Posted 11/12/2009 11:08 PM (GMT -6)   
Good evening,
It is always on your mind whether you admit it or not. I had my first post op PSA about 6 weeks after open surgery and it was .3. Needless to say I freaked out a bit but my doc. said that it took a little time to get the materials out of the blood stream. Now, four months post op I had a less than .01 result and I felt something inside of me relax. I didn't feel tense that I could tell but I think all of us dread it. Those of us who have had the surgery are a bit used to getting bad news by this time so we seem to be a bit battle hardened I guess. Buck up and keep reading these posts. These guys are great and have experienced everything you might have to. Keep communicating and keep your spirits up. Cheers-- Dilbert61
Initial PSA 4.7 retest 4.9
Biopsy January 2009, two cores 3+3=6 Gleason
Diagnosed Febuary 2009, age 47
open Surgery June 2009, radical, open, nerve sparing retropublic prostectomy
No positive margins and a favorable Gleason's grade of 3+3=6
PSA August 2009 .5
PSA November 2009 undetectable


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2216
   Posted 11/13/2009 4:19 AM (GMT -6)   
Mel,


I never got further than BASIC back in the 1970s when the single computer at my University occupied three floors of an office block.

I guess all I need these days is some sort of Subroutine that just gets permanently stuck in a loop:



10 - INPUT not to much

20 - GO TO bathroom

30 - GO TO 10



Alfred

pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 11/13/2009 9:16 AM (GMT -6)   
Alfred,
If you ever want to get out of the loop just throw an exception and let the service routine handle it.

Bob
Age 70, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin
Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative
Four PSA tests undetectable, latest Oct 30


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 11/13/2009 9:23 AM (GMT -6)   
Computer operator from midnight until 4 am : IBM 360/50
Jeff
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