Do you know your prognosis?

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

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

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

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! 

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.

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.