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Posted 7/11/2011 10:59 AM (GMT -5)
Mag,
A low or no psa is indicative of a varient. If you want to treat it you must find out what varient you have and see a specialist like Myers that is familiar with varients. Dr Brankhoff in Germany runs a number of tests on the pathology slides to identify varients. If you send me an email I will send you a 21 pg document identifying the markers he uses. This is a area of PC that only a handful of doctors are familiar with.
JohnT
Posted 7/11/2011 11:18 AM (GMT -5)
That was very depressing

 

Posted 7/11/2011 12:45 PM (GMT -5)

I think this thread is getting way out of hand.  First of all,  any one of us man, woman or child at any age could wake up one morning with a pain somewhere in our bodies and subsequently go to the Dr. and find out we have some form of advanced metastatic cancer.    This is a risk every living thing on the planet faces.  Second, with prostate cancer this is a very rare occurrence. 

I could only find one study that addressed this issue and this is what they said about it.

 

 “Progression of PC may occur despite undetectable or low PSA levels. Complete physical evaluation and imaging studies may be indicated in the surveillance of patients with high-grade, locally advanced tumors, especially when atypical histologic variants are present.”

 

Here is the article.

http://www.ncbi.nlm.nih.gov/pubmed/17171704

 

8 out of 10 people had a variant of PCa meaning they did not have adenocarcinoma.  

 

Third,

We don’t know anything about the particulars of the case of 142 friends relative.   The fact that this can happen to someone with PCa is true, but it is extremely rare.  Even if it did happen to one of us there is nothing we can do about it.  The timing of finding metastatic prostate cancer does not affect the survival time thereafter.  Johns Hopkins has a study about this.

 

This thread serves no purpose other then to “scare the natives.”  The chances of this happening are very rare if you have adenocarcinoma PCa.   I read through this thread and it reminds me of chicken little.

 

I really wish 142 would have thought twice about this before posting this thread.  Athough, we all have a right to post anything we like here.  There is no benefit of any kind to anyone having this information.  Even if you are in the very small number of people that this could happen to, knowing about it sooner rather then later will provide no benefit to you and only cause a lot of people undo worry.

 

 

Post Edited (ChrisR) : 7/11/2011 11:53:28 AM (GMT-6)

Posted 7/11/2011 1:01 PM (GMT -5)
ChrisR,

I did consider this, and how to post it. I certainly want us to be vigilant, and not rely on the PSA as the holy grail.

I do not see signs of it getting out of hand, or I would be the first to say something.

Posted 7/11/2011 1:04 PM (GMT -5)
I completely agree with ChrisR. Anyone could be hit by a car on the way to see the doctor. Does that mean we should avoid going to see the doctor? Of course not.

Right now, I'm trying to decide upon a treatment for my PCa and I don't need to think about things like the earth being hit by an asteroid.

Just my opinion.
Posted 7/11/2011 2:21 PM (GMT -5)
Chris,

I respectfully disagree with your post, and realize you have the right to say as you please as well.

I think the topic is valid. It doesn't matter if such a case is rare or infrequent. The point to me, is that it happened, and can happen.

To often people are told here at HW, that "you aren't going to die from your PC", that you will "die of something else long before the cancer can progress", or "you have a low volume Gleason 6, and you have nothing to worry about." Remarks along those lines.

The trouble with nonograms, studies, percentages, averages - they are just numbers on a piece of paper. Speaking only of my own journey, not one time - according to the "stats", has my cancer done what would be considered "normal". It already breaking the rules of averages, and has a mind and purpose of its own, despite my treatments and intervention.

Cancer is a very individual thing to deal with. My 2 best doctors both believe in treating the patient, not the number. Each human body reacts differently to things, and thats often flavoured by a person's prior medical history and condition, as well as their own unique genetics and DNA strands.

Whether we like to admit this, or talk about, or write about it, there are men right here at HW that will die of their prostate cancer. Not all will have happy endings. Cancers can and do progress with people. Thank goodness, hopefully most here will outlive their PC, and not die of it.

No, people shouldn't obsess or go nuts over the thought of dying from their cancer, that's not healthy either. But when a topic like this comes up, or others of similar theme, no reason to either be afraid or go into denial (Not saying you fit either category, just speaking in the general sense).

Giving hope, and extending that hope to others is always a good and positive thing. We have to be careful not to go to extremes on that end of the spectrum either, as men die of PC every single day, year after year. And contrary to some kind of "urban myth" going about, not all are old men that were diagnosed late.

Too me, personaly, there is no aspect of PC that should be off limits or taboo.  Just my personal opinion.

David in SC

Posted 7/11/2011 3:15 PM (GMT -5)
Jerry L-

See http://www.webmd.com/cancer/carcinoembryonic-antigen-cea for info re: CEA.

I've been following Provenge's progress for quite some time. My insurance company refused to pay for it and then 3 doctors told me it would not help me. I've just finished 5 cycles of Jevtana and, in fact, just returned from the hospital after undergoing bone and CT scans. Abiraterone is next on the menu. Haven't heard it referred to as Abby Road, but that's certainly easier to spell and pronounce. And, I believe most of the testing was done in England.
Posted 7/11/2011 3:37 PM (GMT -5)
As far as having "too much information" - I did talk to more than one urologist who expressed the idea that reading Walsh's book (and most of those like it) caused more harm than good.

I've mentioned before that I came to HW months after my surgery, and just at the start of my RT. So it could be said that I was flying blind into a hurricane, not knowing the eye was the middle instead of the other side. At least I had the good fortune that someone (not a doctor) gave me a copy of Walsh's book at the beginning. And after the first few days of heavy reading, I was a basket case, since I finally understood what was potentially down the road for me.

I don't regret learning what I learned. Wish it had been more.

Posted 7/11/2011 5:25 PM (GMT -5)
I also think this is a useful thread, and is a good warning to those of us with with a low PSA who think "I can't have bone mets". Although not common it is still possible. I recall my uro saying something to the effect that if I had bone mets, my PSA would be in the 100's. Now clearly wrong, or maybe my recollection is clearly wrong :-)

There are many things out there that will kill us. Each may have a low probability of happening, but there is no doubt that something will get us all in end. Just like it has always been. :-) Sure, let's take sensible avoidance where possible, but let's also recognize that there are some things we can't control. In the meantime, let's enjoy the life we have left, and not fret about things that may never happen.
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