Taking a Poll on PCa~the in between waiting on psa numbers: Twilight Zone or Limbo Land (which 1)

Terminology for Psa's while you await results
2
Twilight Zone (episodes) - 12.5%
11
Limbo Land (living in limbo) - 68.8%
3
Outer Limits (do-do-do-do-do) - 18.8%

 
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zufus
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Date Joined Dec 2008
Total Posts : 3149
   Posted 1/28/2011 6:40 AM (GMT -6)   

This is a professional (lol) poll and will be used as an abstract for other PCa forums and groups as to coining a term for the in between times of waiting on PSA (the anxiety zone), think of it collectively for all patients and all stages of the disease..including the BCR and HT guys on various therapies awaiting the significance of a new drug and its effects on their Psa values, the guys whom just had surgery and awaiting numerous years of testings....and such (I got the and such in there-LOL).

Now do you prefer the terminology and analogy of (Rod Serling's) Twilight Zone whereby you don't know fiction from reality, a complete mind blowing experience for the one entering it.

Or do you prefer Limbo Land....you live in limbo between Psa tests and it seems to go on and on.  No definitiveness easily found, or even if you start HT or other salavage therapies, is it Deja Vu and back to the newer Limbo Land?

Or are you an Outer Limits kind of guy!

Your input would be alot of fun right now...it is cold in Michigan and I am bored big time. I know other guys like some (moderators) LOL- whom might be out on 4-wheelers right now and having a blast yeah   please don't send me any photos it may cause cardiac envy arrest.

 Vote now and vote often (LOL)!

Not intend to offend anyone, as PCa is serious stuff and in my case likely fatal, but I am still having a little fun along the way.

 


Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35, ct and bone scans look clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed useage

Post Edited (zufus) : 1/28/2011 5:48:08 AM (GMT-7)


Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 372
   Posted 1/28/2011 7:04 AM (GMT -6)   
Well..............I'm sometimes in Limbo Land, and sometimes--I'm not. I think I'll create my own show, although I'm a big fan of the actual Twilight Zone series. For the first year of surgery, I'd say I didn't worry too much about PSA checks. they are what they are going to be. But I have been looking to supplement testosterone as I was approaching my 2-yr PSA check. So the 2-yr check had a me a little anxious. Now that I have started "T" supplementation, we're going back to 3-month checks. So the anxiety might reamin now for a while for obvious reasons-----------so I voted Limbo Land
 
Arnie in DE (AKA Burgess Meredith in "So Much Time" episode)
Age 56 (biopsy & surgery)-PSA-3.9-Biopsy 8/19/08--4 of 12 cores positive; 5% involvement, Gleason 6 (3+3) 1/26/09-DaVinci Prostatectomy at Presbyterian Medical Center/HUP-Phila, PA-Dr. David Lee
Path. Report- G7 (3+4)Adenocarcinoma, no capsular involvement, seminal vesicles clear, lymph nodes clear, negative margins
Continent at 3 mos.------ED improving
PSA at 2 yrs-<0.1

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/28/2011 8:05 AM (GMT -6)   
Would love to participate, but really don't understand your 3 choices, anyway to "dumb" it down for my benefit?
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/28/2011 8:58 AM (GMT -6)   
Arnie- yeah I can see where adding T which has controversies both ways, can be a plus as to living la vida loca, so it is the theory of relativity. T= not being square! (LOL). I hope all is on the up and up in your world (wink-wink). Only T I got is teeth and that ain't bad either at 60 now. cool
Good to see your explanations too, it could be an interesting poll.
 
Purg- are you on drugs  (well yes you have been-LOL), I thought you would be one to thrown in a mega laugh asap.  While you and all of us await these psa numbers, we live in suspended animation almost and paranoia wondering where are we now???  What is the freakin' new psa number?  This is Limbo Land, or the Twilight Zone or Outer Limits of dealing and living through PCa.   I hope that clears it up.....the poll is all for laughs...just ways we think of it. tongue

Post Edited (zufus) : 1/28/2011 8:02:02 AM (GMT-7)


clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2667
   Posted 1/28/2011 9:05 AM (GMT -6)   
Purg, I think rather than any of the three choices, I would call the period of waiting for PSA results by a name quite familiar to you:  "Purgatory."  It's a period of suffering required before moving on to the next level.

daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 1/28/2011 9:26 AM (GMT -6)   
zufus,

I had to go with Limbo Land. Quite honestly I'm riding a roller coaster between tests. My last result was the 25th of this month, things turned out well but the roller coaster is getting worse as hope for a long term cure gets greater.

The first few tests I figured I'd have BCR and was resigned to it, now hope is setting in and, of all things, the waiting is getting worse.

A month before the test I start thinking about it, a few weeks before blood draw the fear and depression sets in, "Will this one be the one" etc. The nights between blood draw and results are hard to find sleep. Even after the good news all I can think about is "yea this time, what about the next one". Now, a few days later it's out of my mind and I'm focusing on a couple of months of being able to do what I want without worrying about it. I guess I should be glad that I get 2-2.5 months of not worrying.

The thing that gets me is there is no definitive answer, no "yep you're cured" or even the if it turns out other way would be a solid anchor to hang onto. I'd know something. In an effort to explain it to a friend I tried to put it in simple terms.

"Every 3 months someone hands you a revolver, you don't know how many bullets, if any are in the gun, you spin the chamber and pull the trigger. If nothing happens then you get to do it all over again in 3 months"

I have tools to deal with this from another "disease" I've been recovering from for over 20 years but the thoughts still creep in. I seriously doubt if I'm telling anyone anything new ;-) but it feels good to vent and admit it.


Thanks for giving me a thread to vent.
Dave in Durango CO
07-06 PSA 2.5
01-08 PSA 5.5
09-09 PSA 6.5
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5
03-01-10 Age 55 RRP in Durango CO by Dr Sejal Quale and Dr Shandra Wilson
03-16-10 Path' G-8 (4+4+5) Bilateral involving 21% of left lobe, 3% of right lobe, SVI, Focal positive margin, pT3b NO MX

All PSA as of 1-25-11 <0.04

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 1/28/2011 9:50 AM (GMT -6)   
zufus,

I have to be either one of the dumbest, shallowest, or whatever-est here on the board.

None of the categories fit me. I just show up when the schedule says so and take the freaky little test. They give me the numbers, I talk with the doc, we discuss options and future plans and then I go home and get my boat ready to go shrimping or fishing. If it ain't fishing or shrimping it's going on to the ball field to umpire, like I am doing in a few hours.

Of course sometimes it's both. I went out in boat last night and going on the ball field today.

Hey, wait a minute, I get it. My boat is considered a shallow water flats boat. Maybe I am a shallow thinker about all of this stuff. But in the meantime, I am still going to enjoy every day. I have given this PCa crap too much due and energy already. I don't mean to say I am not concerned about the future, it's just that spending all of the time worrying and anxting over it is not going to help me. It is just having the facts when they arrive and making the decisions as they come up that help me direct my own course and path.

Maybe you can add a category for the few like me;

"IT IS WHAT IT IS, NOW TELL ME THE darn NUMBER AND THE OPTIONS AND LET ME GET BACK TO LIVING MY LIFE".

For what it's worth,

Sonny
60 years old - PSA 11/07 3.0 PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5% positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy
2/23/10 Post IMRT PSA 1.0
3/22/10 PSA 1.5
4/19/10 PSA 1.2
5/22/10 PSA 1.3
8/9/10 Completed Radiation for MET
9/7/10 PSA 2.2
1/5/11 PSA 3.9

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/28/2011 10:04 AM (GMT -6)   
No Sonny it is meant as folly in how dumb all this is...we live in paranoia...after awhile you get more immune to going bonkers. Don't take it too darn seriously, I actually don't panic over the next psa test, although at this juncture not a zero club situation for me.

Definitively we got to keep on keeping on and you are a good model of that....no you are not dumb or shallow....I admit I am for posting it...I still like it as a display or how we handle, process and share our dealing with the disease.
 
I would not have guessed your reply or some others thus far, so helps us all learn something about each other in that respect.

Plus you know.....I love you man....I do have compassion for you and Lynn, believe that or not.
 
(thanks Casey I needed to edit that into paragraphs..I do listen)

Post Edited (zufus) : 1/28/2011 11:40:30 AM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/28/2011 10:04 AM (GMT -6)   
Frightens me how much Sonny and I think alike. Know that I understand the game plan, I don't think any of the categories fit me. Perhaps you need a "none of the above" or "other category" choice for us weirdos.

I have passed the point of caring what my PSA tests say or don't say. After I made the decision to skip over my Nov. test and wait to Feb, I just don't care. If it goes down (unlikely) ,then great. If it goes up (as expected) then so what. (These remarks are to myself only, understand).

Regardless of my Feb reading, I plan to either only do PSA tests yearly or at the most, 2x a year after this one is done.

I have used my two curative passes, and if it hasn't worked, then so be it, I have resigned my mind to that outcome. For me and me alone, I do not want to go the HT route, the physical castration route, chemo route, or any experimental drug route. Thought long and hard about this.

It's not a question of giving up, its a question of accepting one's fate and one's choices with quality of life issues.

David
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 1/28/2011 10:09 AM (GMT -6)   
Now really gentlemen: I think this thread is just some sort of wheeze by you chaps across the Atlantic to try and confuse a daft English chap like me and prove that we are indeed separated by a common language.
There was I thinking I was merely sitting in the drawing room having a nice cup of tea.

Alfred

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/28/2011 10:15 AM (GMT -6)   
So what are you drawing as you have your cup of tea?
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 1/28/2011 10:35 AM (GMT -6)   

Edited so as not to offend anyone:

"XXX grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference."

Waiting for the PSA test result is a piece of cake... Its the results that'll kill ya skull


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 1/28/2011 10:38 AM (GMT -6)   
zufus,

I understand the entire thought behind the posting. I know that it is meant to be light. My response was meant to be light as well.

If there is the one positive I can take from all of the PCa stuff it is getting to meet (albeit through the internet) all of you wonderful folks. I have met a few in person and look forward to the great many more I will meet in person at GFMPH in Baton Rouge.

I take a GREAT amount of comfort knowing that I am not alone on this journey. Reading the travels and trials of so many others helps me keep all of this in perspective.

I was just telling my wife about this thread and my post. Am I really that positive kind of guy (I like to think so), is it because that to date other than the occasional dribble or the absence of the "Cat Couldn't Scratch It" woody, I physically don't feel any different. Or is it because of Lynn's travels and her journey with her cancer that mine pales against.

She told me naw, none of the above. I am truly just a positive kind of guy for the most part. Kinda makes me feel good to know that.

No harm no foul. Thanks for bringing a little light and sunshine to the day. I just have to work harder on my wit so that when I mean to be funnier it really comes through.

Sonny
60 years old - PSA 11/07 3.0 PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5% positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy
2/23/10 Post IMRT PSA 1.0
3/22/10 PSA 1.5
4/19/10 PSA 1.2
5/22/10 PSA 1.3
8/9/10 Completed Radiation for MET
9/7/10 PSA 2.2
1/5/11 PSA 3.9

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 1/28/2011 10:45 AM (GMT -6)   
zufus, if you could please break that 5-line first paragraph into about 3 sentences, then I can understand what the heck you are talking about...

Then, if you make a legit entry the Aerobics/PC thread—and I mean a legit entry, meaning you actually have to get some exercise and such somehow, someway—then I enter a vote here...deal?

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3802
   Posted 1/28/2011 11:39 AM (GMT -6)   
i think limbo-land best describes my wait. i'm no longer scared and my optimism is rising.
 
i have to have blood drawn in the next week for my doctor's appointment feb 8th.  this is not THEE test tho....that will be in june.
 
nevertheless there's a slight possibility i could get bad news.  i'll have the blood drawn and wait till the 8th for results.
 
BTW, zufus i was wrong about the material my neighbor used to panel his  bedroom.  i said diamond plate aluminum but it was corrugated.
 
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

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/28/2011 12:50 PM (GMT -6)   
F-8 hope you pass the test(s) and thanks for the tip on corrugated, huge difference!

Casey- I went back and did so, you were more than correct on that mess

Sonny- thanks for being amongest the best stand up guys around, I would pull this thread off here if it offended you, btw.

Steve-n-dallas I hear you brother and I got 9 years almost of psa anxieties (maybe that is why I am nuts, along with ADT3 for 2 yrs. and further drugs...I am not Mensa material)

Alf- now don't tell me you blokes across the pond (lol) don't understand us, with the less than the Kings English verbage used by us USA chaps, like ebonics and jive and street talk...ya know what I'm sayin'....word. Shows you what happens when you break free from the mother country with freedom and add a few hundred years to dumb it down. (laugh)
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35, ct and bone scans look clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed useage

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 1/28/2011 1:26 PM (GMT -6)   
Zufus:
 
YOU ARE VERY STRANGE
 
Love,
 
Mel

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/28/2011 3:01 PM (GMT -6)   
You are correct Mel, perhaps it is better living through chemistry, and I do feel this ridiculous rush of humor (currently), and all I did recently was the Dr. Clark liver flush home program (it's on the internet). Go figure. Maybe cleaning those toxins out had an effect? I do feel great and healthier...maybe after a few decades it is fabulous.

I would say you are empirically correct, no cookie cutter, no Pulte homes designs and I have two older brothers as role models....you'd love them too. It's great not to be clones, that is very boring. redface

I like honesty, Mel.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/28/2011 3:44 PM (GMT -6)   
Zufus,
It won't be until tomorrow that I pull out the four wheelers. And you forgot "All of the Above" so I am unable to vote...

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

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/28/2011 8:10 PM (GMT -6)   
I will be shoveling snow perhaps or thawing out my frost bitten toes, see how these things might affect ones winter time mental state? I don't even have a snowmobile anymore....no fun for you...said the Soup N_zi. So I gotta make my own fun and playing in the snow wasn't working that well.

Wear you helmut or I will call granny on you!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/28/2011 9:31 PM (GMT -6)   
I still don't think you have enough categories to choose from for some of weirdos and odd ducks.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10
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