When is PC terminal

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compiler
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Date Joined Nov 2009
Total Posts : 7197
   Posted 11/14/2009 12:39 PM (GMT -6)   
OK, I know this is a horrible subject, but I've been wondering about the answer.
 
Suppose someone has surgery but then the PSA rises, indicating PC.
 
I assume the next step might be radiation. I understand there is still a chance of a cure or at least a very long term holding pattern. Suppose PSA starts rising again. Then it's time for hormonal therapy. Is there still chance of a cure or a real long term survival holding pattern?
 
Let's say PSA rises after that. Then what? I assume some of the newer drugs. At this point, are we talking terminal and hence palliative care.
 
I'm new at this, but I assume all questions are on the table.
 
Mel
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%).
 
History of BPH/prostatitis.
 
Awaiting results of my PCA-3 test which will determine whether a biopsy is in my immediate future


zufus
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Date Joined Dec 2008
Total Posts : 3149
   Posted 11/14/2009 1:01 PM (GMT -6)   
Welcome to the Million dollar question for us patients living in "limbo land" you know you are not cured, but wonder how long do I have??? It is apparently highly variable, too many unknowns in PCa as to how the average patient might respond.
Examples: Robert Young diagnosed with bone pains, psa 3000 approx., did live 3 yrs. thereafter with protocols (see www.phoenix5.org he established this and 1st laypersons dictionary)

A case of a patient diagnosed with small cell PCa, probably diagnosed late...this version of PCa is horrible....died within weeks after wife posted on a forum like this (sadest case I have witnessed)

Bill Aishman (layperson of excellence on PCa) did many protocols and studied this pretty well for any layperson (story found within www.prostate-help.org) I think he lived around 7-8 yrs. with a high risk scenario to start with.

There are guys listed on www.yananow.net in the 10yr.+ range with ridiculous stats, while others with lesser stats did not live 5-6 yrs. (seen on the same site)...many variables

There are chances for anectdotal cure(s)(maybe 1-2%) which are not written or established in any abstracts or data we all can look at(based upon my own assessment-readings, books on PCa, etc., perhaps it is -0-, I don't think it is). There maybe patients whom are not considered cured but living 15-20 yrs. after even with non-cured status psa numbers, and they die of heart disease or other things.

Myself still doing well thus far, coming up on 8 yrs. with diagnosis of incureable PCa and psa levels in the last 3-4 yrs. .35-1.3 range (up and down many times)-should be under .2 based upon my various protocols done already.

Dx-2002 bpsa 46.6 12/12 biopsies all 75-95%, gleasons 7,8,9 (2 sets about the same) also total urinary blockage-emergency room which lead to finding out I had this PCa

How long??? I will find out maybe then someone else can post it for me....

Post Edited (zufus) : 11/14/2009 12:11:44 PM (GMT-7)


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 11/14/2009 1:23 PM (GMT -6)   
If someone is that interested send me an email I won't bore the others herein with such. Thanks for mentioning such, my journey is not typical nor was my original diagnosed stats. Very pleased to be doing and feeling the way I have been for the last 5 yrs. after quiting ADT3 use(2004) and radiations back in (2002).

geezer99
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Date Joined Apr 2009
Total Posts : 990
   Posted 11/14/2009 3:01 PM (GMT -6)   
Pretty much the last line of defense once the cancer has spread is hormones + chemo. Remember that PCa comes in different varieties and so do individuals. Even then, the fraction of terminal patients that die of PC seems lower than the fraction of those with other terminal cancers.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 11/14/2009 5:46 PM (GMT -6)   
At the risk of sounding glib, PC is terminal when we die.

Between now and then, there are so many twists and turns that are different for each of us. New treatments and solutions are being added to the menu each day.

For myself, I of course try to keep some kind of future game plan, but really, it is just too mind boggling and time consuming, and even depressing to think about it.

I feel good now, I am going to deal with the problems later. I have a life to live today.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 672
   Posted 11/14/2009 6:28 PM (GMT -6)   
 
That is the question that we all seem to be asking.  Excellent question, but no good answer.
 
I think when our doctor tells us that we have ""cancer"" there is a certain amount of shock and fear.  Even if we have educated ourself about Pca the tension increases. 
 
You can read the statistics and find that even in the worse case there are usually years ahead.  Some others need to recognize that they can live a long time, but their quality of life might be impacted.  The more serious cases mean that every day you will wake up knowing you need to do something to slow down the progression.  But you are still alive ...
 
I guess I have always seen life as being "terminal".  The best we can hope for is to enjoy it while we are here.  It makes it a lot better if you are not fighting illness and problems, but even if you are it still seems pretty good to me. yeah
 
PSA up to 4.7 July 2006 , nodule noted during DRE
Biopsy 10/16/06 ,stageT2A
Very Aggressive Gleason 4+4=8  right side
DaVinci Surgery  January 2007
Post op confirms gleason 4+4=8 with no extension or invasion
no long term continence problems
Post surgery PSA continues to be "undetectable"
One side nerves spared
Bi-Mix for ED 
born in 1941


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 11/14/2009 7:22 PM (GMT -6)   
lifeyguyd, life certainly beats the alternative.
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


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 11/14/2009 8:38 PM (GMT -6)   
Bro-Geezer although hormone therapies and chemo appear to be the last line, let me add some to that last line that have been used or are being used including the hormone therapies and just a couple others (LOL-!!!):

lupron, zoladex, viadur, trelstar, eligard, abarelix, buserelin, nafarelin, acetate, degarelix(non flare), avodart, proscar, megace, DES, emcyt, estradiol patches, casodex, eulexin, nilandron, ketoconazole, tamoxiphne, mitoxantrone, abiraterone acetate, carboplatin, alpharadin, strontium, samarium, apatone, astrasentan abt-627, monoclonal antibodies-immunotherpay-dendritic cells, cox-2 inhibitors & nsaids, sulindac, exisulind, IMC-A12, Ixempra, epothilone, mdv3100(super casodex), noscapine, phenoxodiol, quadramet, satraplatin, valproic acid, provenge, xinlay, tarceva, astrasentan ertinollib, gleeve, prostvac-vf. vitaxin, zd 4054, ixabepilone, gvax, calcitriol, iressa, kos-862, taxotere thalidomide, revlamid, cytoxan, luekine, sunitinib, prednisone, dexamethasone, triamcinolone, aminoglutethimide and I know a missed a few others but hey nobodies perfect. Also, there are possible combos on these drugs and some others I missed that can be effective......do you think a uro-doc has a clue on alot of these??????? Atleast the onco-doc has some clues and is willing to learn them , as it is in his best interests and skill set. Still alot of unchartered and unmeasured successes on these possible useages. Be willing to look outside the standard drugs might be useful as evidenced by some patients, already. yeah   There are other new things in the pipeline also. Not even mentioning the possible herbs, food or diet, vitamins, natural products (Rain Forest types etc.). Which may have usefuless.


Post Edited (zufus) : 11/16/2009 6:35:35 AM (GMT-7)


waterloo
Regular Member


Date Joined Jan 2009
Total Posts : 100
   Posted 11/15/2009 6:12 PM (GMT -6)   
 Hi all
I have just received a letter that and this is just canada  british columbia pension benefits has a new policy on shortened life expectancy provision for both personal portfolio life income funds and locked-in registered saving plans..On march  09 British Columbia passed legislation for B.C LIFs and LRSPs which expanded the definition of the shortened life expectancy provision from a physical disability to a "disabiliity or  terminal illness .A medical doctor must provide certification  of this .So where I stand  with this is that  all the info that is out  why are they not able to give much better  life expectancy.When you are trying to work as well as keep or trying to retain your health a little help from the goverment would go a long ways.Maybe a little of topic
     Deidre 
    My Husband age 54 at diagnosis
   Radical prostateectomy  in Sept 2006
  • Original Gleason 3+4=7 post op 4+3=7
  • Post Op .004
  • May08 psa 0.05
  • July08 psa 0.09
  • Oct08 psa 0.16
  • Jan09 psa 0.24
  • start"s radiation on March 12/09(33) in total
  • July 09 psa 0.4  TESTOSTERONE 15
  • SEPT 09 PSA 0.55  TESTOSTERONE 13 
  • Bone Scan Oct 19 09  CLEAR (YA HOO)


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 11/16/2009 12:06 AM (GMT -6)   
I was told by a uro oncologist from Ohio that in his state the five year survival rate for all, that's all as in every single case, prostate cancer diagnosis was 100 percent. And, as he was quick to point out, that included the very worst cases caught late.

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    


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 11/16/2009 8:01 AM (GMT -6)   
Hey Sheldon not sure I understood that 5 yrs. survival thing you just posted, does this include patients whom did various protocols etc.?? LOL- I was born in Ohio, you saw my stats posted and urinary blockage (bad sign for PCa folks), being in Michigan made me exempt??(thats a laugh). Wonder what that doc would think about the guy on yananow.net whom was like psa over 3000 bad stats (gleason 9 and such)and still here over 10 yrs. now. and there are others.

Maybe as an averages thing 5 yr. can be something to use as a guide or reference. Don't forget about the 12-14 variants of PCa, those folks whom usually are diagnosed with: small cell, signet ring and some other types of PCa are at extreme risk and hormone therapies might not even work against those strains. Thus the prognosis is not even that.

Now if you failed the 'normal' treatments do you look at things outside the box? I heard of couple therapy concepts that were towards bizarre and yet some of those patients were beating the odds and controlling the PCa for how long I don't have the info, but they were already given up on by the docs in most of those bizzaro cases I had read about over the years. Thank the pioneers out there that are fighters and writting about it for our benefit, guys like: Robert Young, Bill Aishman, Howard Hansen(living), Lyodd Ney(Paactusa.org founder) and others. They could have remained silent at home with this and kept it to themselves, good thing they didn't,they already have made a big difference to the PCa community.
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