Do you know your prognosis?

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veteran1
Regular Member


Date Joined May 2007
Total Posts : 133
   Posted 6/20/2007 8:38 AM (GMT -7)   
This is a question I have always wanted to ask men with prostate cancer, but have thought is to personal. I know my general overview (prognosis) not specific.
I am not asking for you to divulge your prognosis here. Rather, do you want to know it? How did you react when told?
Did your doctor volunteer it or was it difficult to get?
I know each of us shares the same awful
disease, yet we are different...age, general health, stage, gleason score, PSA.
etc. Also, numbers or stats do not control
how we act or think. We should take control of our disease.
With this in mind, if you would share your thoughts on prognoses in general, it would help me very much.

Thank You
Veteran1

Age: 54
Diagnosed: 12/03/05
Boiopsy: Gleason 10
Surgery: 02/14/06
EBRT: 06/05/06 thru 07/25/06
Diagnosis: T3b Seminal Vesicle Involvement, Gleason 5 + 4 both lobes
Now taking Intermittent Hormone Therapy
Current PSA (May, 29th, '07)
.01

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 6/20/2007 9:48 AM (GMT -7)   
Interesting question Vet,
Interesting first because when I first sought out a support web site I expected this question somewhere. I'm a 9 month veteran here at healingwell.com and this is the first someone asked. Interesting second, because this is where I thought I'd be talking about my illness and its ramifications. I think we avoid this question for different reasons. I don't think its cause its peronal either. We are able to talk about our ED, incontinance, fear of cancer and much more detail than this simple question.

Here's my answer. I don't have a determinable prognosis at this time. Long term, I was diagnosed with advanced stage high grade cancer but I can survive it. I turn 45 in six days. The odds with my numbers at my age of mortal recurrance at sometime in my life is something that could fester in my mind with negative effects. Depression, fear, sadness, and allowance for me to feel sorry for myself. But it doesn't. My prognosis therefore is improving every day. You are right about taking control. And to do that you have to control your own fears. I chose to live and make every effort to keep positive. Prognosis in its literal sense is not so important because my PSA is gone, the prostate is gone, the HT is tolarable, the radiation is going well. I just walked 3 miles after radiation today. My neighbor and I talked the whole way about the future development in our area, about business, and about our trip for this weekend to go offroading. That sounds like great prognosisticating factors. I know my prognosis mentality, but I don't think anyone can tell what my physiological prognosis is.

Tony

kziz
Regular Member


Date Joined Feb 2007
Total Posts : 242
   Posted 6/20/2007 2:30 PM (GMT -7)   
Hi Vet, as tony said, this is a great question. I don't think that doctors want to "guess" at that anymore. Too many law suits. Back in 1992, when my dad was diagnosised, one doctor told him to go home and get his affairs in order and that he probably had 6 months to live. He turned 49, the week he was diagnosised. He was given a book by Dr. Bernie Siegel called "Love, Medicine & Miracles" as well as "Peace, Love and Healing". After reading these books, my dad chose to live. And he did, a lot longer than any of his doctors could imagine. In the 1st book listed above, there is a chapter called "the will to live". Dr. Siegel writes about his experience with his patients. Both books are well worth the read.

And Tony, keep up the great prognosis. Your attitude and belief will pull you through this. Courtney
Kurt & Courtney
47 year old
Great Health prior to dx
Dx on 1/29/07
PSA 4.1
Gleason 3+3=6, both lobes
Stage T2c, I believe
Tumor involves 20% of cores, both lobes
Live in OK
Da Vinci scheduled 3-14-07 in Austin
Post-Op  Gleason 6, Stage t2c nx mx  YAAAAA HOOOOOO! 
1st PSA Post OP  Undetectable!!!!!!  OFF THE CHART
2nd CT scan, to recheck enlarged lymph nodes not related to PCa NO CHANGE relook in 6 months


veteran1
Regular Member


Date Joined May 2007
Total Posts : 133
   Posted 6/20/2007 4:09 PM (GMT -7)   
Tony and Courtney,
Thank you for your beautiful answers. I will print these out and read them the next time I that "down" feeling comes along.
The reason I asked these general prognosis questions is due to a treatment decision I have coming up.
I would still like some help concerning questions like: Do doctors, in your experience, lay out the treatment advantages and disadvantages in numbers as well as curative values? Also do stats cause indifferance or sadness. Your comments and help will be appreciated.
Thank You
Vet

oldfordlover
Regular Member


Date Joined Apr 2007
Total Posts : 52
   Posted 6/20/2007 6:11 PM (GMT -7)   
As you know from our time chatting, I have had a full plate this last year or two. when I was diagnosed, I did all the research I could, as quickly as possible. I wanted and felt like I needed the truth. With the numbers I had my doctor said that he saw 15 people with cancer before he saw 1 at my level.

I think my method of dealing with things is to find all the scenarios possible so that I can prepare for each one of them. make my peace with them in a sense. when I talked to my doctor and he was preparing me for surgery, I said to him "I don't have time to be sick, and I sure don't have time to die, so lets get this done with so that I can get back to work. There too I think I was just being me. I tend to always just go on.
During my time on the board before surgery, everyone was telling me to "take care of myself". I know that it was a logical thing to say, but for me the way I feel the best and most at peace and happiest is when I am taking care of my wife and my family.

I think some would say that I am avoid myself or not taking care of myself, but in fact it brings me joy.

Since the surgery, due to somekind of miracle, I have been told that I have clean margins, clean lymph, even the seminal vessels which were removed were clean.

I wanted still to know the numbers. My doctor said 85% chance I am done with prostate cancer. I know that I have not yet had a PSA done, and maybe I am not done with PC yet, but I am planning to live long and strong. I have a job to do.

I always will want the truth--the best guess from the best guesser. However I also have come to realize, since I have experienced for myself, that I am not limited by or controlled by those statistics.

I hope that answers your question.

I will be talking to you

David
Age 50
Diagnosed 4/24/07
PSA 5.5
cancer in 8 of 12 biopsy samples
gleason score 4+4=8; up to 70% pti;
some perineural invasion
surgery performed 5/23/07
clean margins--clean lymph--clean seminal vessel--capsule not penetrated
gleason score upgraded to 9


AEG
Regular Member


Date Joined Nov 2005
Total Posts : 154
   Posted 6/20/2007 8:22 PM (GMT -7)   

Hi Veteran1,

A quick reply ...

Here is a site that has mentors and their experiences:

http://www.yananow.net
http://www.yananow.net/Experiences.html

Also, I recently posted an article/interview with Dr. Fred Lee that talks about his experience and I think it's worth reading.  Here is the link:

http://www.rochesterurology.urologydomain.com/handler.cfm?event=practice,template&cpid=34

Let me know if you have trouble accessing the article and I'll copy & paste it.

Best of luck to you.

AEG

 


sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 6/21/2007 10:22 AM (GMT -7)   
Interesting question, Vet... I found a similar thing to Tony, none of my docs really wanted to discuss prognosis in very solid terms.  I looked at the stats and charts and figured the odds a bit... but who's to say?
 
You're right, it does not get addressed much on this site....but most of the posters hear seem to be real early stage, small tumor volume, and maybe a bit older.  The cure numbers at early stage would probably make you think less about dying, so your biggest concers are ED, incontinence, catherter stuff ---  that's my guess. 
Ever notice how a newly diagnosied post gets 20 or 30 responses, but advanced complication/treatment posts barely get any?
 
With my initial numbers, tumor volume, margin and post-op PSA, that stuff got on the back burner real fast.   This, plus muy initial ignorance, had me wondering if I had much more tha a year or two.....
 
This has passed, so here's how I view my situation:   I have a 50-50 shot that I'm cured versus advanced PC.  IF I have advanced PC, I'll go back on HT, and could go A LONG TIME before actual clinical signs of disease show up. (I like the thread on Mike Milken --- he's 14 years plus post advanced PC diag!) 
 
IF this happens, AND I have enough time, a cure might be found -- or at least better long-term treatments.  You, Vet, Tony, and me -- in our late forties and early fifties, could well live to see a permanent cure evlove.  Or we could take a turn for the worse in the mean time.  Or get hit by a truck this afternoon!
 
My attitude is now --- I'm not going to die of PCa today, tomorrow, or next month.  Or even next year in even a worse case scenario.  Time will tell, in the mean time, I'm going to love my family, work hard, enjoy life, and take care of myself as best I can.
 
Thanks for the post --- that felt good to get that out! 
Sterd82
Age 46
Initial PSA march of 2006: 28
PSA May of 2006: 39
8 of 12 cores malignant
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
Post surgury PSA fluctuated between .04 and .09
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sesions of IMRT Ended Feb 1, 2007
PSA as of May 25, 2007 undectable


naimnut
Regular Member


Date Joined Jan 2007
Total Posts : 93
   Posted 6/21/2007 12:27 PM (GMT -7)   
Very worthwhile thread.
 
I think the idea that, to a certain extent, WE determine our prognosis with our attitude is right on the money.  I love the attitudes reflected in the posts above.  GUYS, IT AIN'T OVER 'TIL ITS OVER!  I've met several guys in my local prostate cancer support group who have successfully fought the disease for 10+ years.  The doctors have a lot of tools and options available out there now. 
 
Me, I'm 53 now, and I'm going to become a grandfather in a couple of weeks, my first grandaughter.  I'm planning to attend her graduation from college and her wedding, and live to see my first great grandchild, too!
Age, 53
PSA 3.76, Gleason 6, T1c, scans negative
psa doubling time 35 months
Da vinci robotic surgery May 31, 2007,
Nerves spared
Clear margins, clean pathology report
Catheter out at 4 days.
Dribbling like a basketball star
At 10 days out, dry all night, most of the morning.
Walking 2-5 miles per day.
Down to about 4 pads/ day.
 


rek3283
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 6/21/2007 2:01 PM (GMT -7)   

Both my URO and RADONC said the 10 year survivability with brachytherapy is now identical to radical prostatectomy.  I'm not sure that this qualifies as a prognosis?

I can tell you that it is an unusual physician who gives a genuine prognosis today.  It's one of those items that the malpractice carriers tell doctors to avoid.  There are no guarantees with cancer of any type.  We have all heard stories of people being given six months to live, only to find them alive and happy two years later.  Like the guy on the NPR website who has had tumors all over his body and is still kicking over a year later.

So, I say here's another issue in my life, but I'm going to continue the march and not be concerned about my mortality.  I anticipate being one of those guys who dies with prostate cancer but not because of it. :-)

One more thing.  After reading some of the posts on this forum, I really appreciate the fact that mine was found early and small.  Along with two really terrific doctors who took the time to talk with me about it all.


REK3283
59 1/2 year old healthcare executive
Nashville, TN
PSA:  7.2;  Gleason:  3+3=6; T1a stage.
Pastimes:  Wife, Yorkies, La Gloria Cubana Serie R #5, Corvettes, F1 racing, ALMS racing, SCCA racing, Bulleit Bourbon, Balvenie and other stuff of lesser consequence.
 

Post Edited (rek3283) : 6/21/2007 3:08:27 PM (GMT-6)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 6/21/2007 5:13 PM (GMT -7)   
Vet, I told you this was a good one. Everybodies response is of very good quality.
I have three oncologists at the Nevada Cancer Institute and City of Hope.  My "Cheif of staff" Dr. V.  layed out the statistics for one at my stages and numbers could do, statistically with and without different treatments.  The other two administer them through their staff.  I was carefully breifed on the advantages and disadvantages of each treatments.  Then, like you, had to decide what to do. I went with HT and radiation, and put off the decision on chemo.   My clinical prognosis was statistically higher doing these thing now.

Rek, I hear similar things you did on the seeds or the LRP, but brachytherapy for me at 44 raised another issue. The long term results of leaving the seeds in place were, and are still unknown. Since my "mental" prognosis has me living until 84 (or longer) I was not comfortable with that path. Not to mention that my stage was T2c prior to surgery and without the surgery I probably would not have known I needed additional therapies as it wasn't until that pathology that I knew my cancer had locally metastisized and I was stage pT3b. That fact applies to ALL who choose a form of radiation versus surgery without extensive tests to verify the staging. This doen't mean it doesn't work.

You are absolutley correct if you think that doctors should refrain from specifics on prognosis. That's why prognosis is rated in terms like "poor, "fair", or "good" as opposed to 2 months, six months, 5 years. Especially with our disease. This is a very unpredictable version of cancer. My step father was diagnosed with lung cancer, 6 mos without chemo, up 15 with it. They were very straight forward about it. And they were right. He lived 14 mos. after chemo at MD Anderson. But that cancer is far more predictable than PCa.

All your support is very welcome to me. Regardless of stage, PSA, Gleason, we are all in this together. The people with advanced PCa here unfortunately have more inspired less common questions and more need for additional responses, but that in no way means we can't learn from those with more favorable outcomes predicted. Thanks all. (Hi Courtney, told you I'd be back)

Tony

Post Edited (TC-LasVegas) : 6/21/2007 8:58:50 PM (GMT-6)


mozart250
Regular Member


Date Joined Jan 2007
Total Posts : 102
   Posted 6/22/2007 8:56 AM (GMT -7)   
For the longest time I have driven myself insane not knowing what my prognisis is.  I am actually considering a second opinion with an oncologist on this one.
 
Stage t3a seems to be a maddening middling stage.
 
There is a decent but not certain chance that the cancer will reoccur.  Depending on what I've read, that probability is anywhere from 15% to 60% (the low probability was based on the fact that the margin was found at the apex and I read a report that that is a good relative place for a marging to exist).
 
If it reoccurs, the salvage therapy would be radiation.  I have read somewhere that salvage radiation is only 25% curative, but I suppose that depends on whether the cancer has metastesized.  Since my gleason is on the lower end (3+4) I have some optimism that salvage radiation might be more successful in my case than with a higher gleason.  But who knows.
 
After this..it is speculative.  Maybe they keep on making advances so that I live with this disease 25 years and die of heart failure.  But maybe I die of a car accident this afternoon.
 
But I have had some time to reflect on this.  Best case is that my appointment with the grave is delayed anywhere from 10 to 30 years or so.  And that I die of something else that I might prefer to die of other than this one.  But in the end, all of us have the same prognosis one way or another.
51 Year Old DBA by profession; amateur pianist by passion.
 
June 2006:  PSA 4.6.  DRE prostate enlarged.  
Aug  2006:  Second opinion confirms first.  Biopsy suggested.
Sep  2006:  Biopsy results positive one lobe.  Gleason 3+3.
Nov  2006:  RPA performed at Fletcher Allen in Burlington VT.
Nov  2006:  Pathology report: Stage T3a and Gleason 3+4.
Dec  2006:  PSA 0.1
Feb  2007:  PSA 0.0 (under 0.1)
May 2007:  PSA 0.0 (under 0.1)


rek3283
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 6/22/2007 2:07 PM (GMT -7)   
To TC-Las Vegas

I probably would not have elected brachytherapy at age 43. At my age (pushing 60) and at T1a, I wanted the least invasive procedure possible. I really wanted to try HIFU, but they wouldn't let me in the trial, and I didn't want to pay big bucks to someone outside of the USofA.

(We even lived in Las Vegas for 11 months one time in the recent past!)
REK3283
59 1/2 year old healthcare executive
Nashville, TN
PSA:  7.2;  Gleason:  3+3=6; T1a stage.
Pastimes:  Wife, Yorkies, La Gloria Cubana Serie R #5, Corvettes, F1 racing, ALMS racing, SCCA racing, Bulleit Bourbon, Balvenie and other stuff of lesser consequence.
 

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