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Re: Newly diagnosed, T1C

Hi Fred,

You've made a very good point about something I felt strongly about for a few years now...."Normal PSA Levels.

I am convinced that there must be millions of men around the world living a full, healthy life with what the medics would call "elevated" PSA levels.

When I was diagnosed, my PSA was 182, and I had only went to see my doctor because I was tired with being tired...too many times going for a pee during the night. I considered that just part of getting into my 50s.

I will admit, though, it was lucky I did go, because the diagnosis made me realise the cause of the occassional pain after ejaculation, and my cancer was certainly well advanced.

It makes me wonder why some men have a PSA in the 100s and still do well with treatment, while some are in trouble with a PSA of 6 or therabouts.

I know of quite a few guys who have had a PSA of between 12 and 20 for many years and they don't have cancer.
I'll wager mine was always over 10, all through my life, from teenage years.

I have asked this before and I have never seen any statistics about it....has there ever been a study of the PSA levels in men right through from puberty till 50s?

Food for thought.

Very Best Wishes,

George


England

Re: Re: Newly diagnosed, T1C

George,

I can confidently say that no one has ever done a study on PSA changes over the years along the lines you suggest – if only because PSA testing has only been around for about 15 years..

The reason that there is such a variance in outcomes at differing PSA levels is because PSA is not prostate cancer specific. At least 65% of men with elevated PSA levels are not diagnosed with prostate cancer and at least 15% of men with ‘normal’ PSA levels were found to have prostate cancer in the one (and only, I think) study that looked at this aspect. Since there are many more men with ‘normal’ PSA levels, it follows that there are more men undiagnosed with what we term prostate cancer because they have ‘low’ PSA levels than there are men diagnosed with prostate cancer because of elevated PSA levels. Hence the calls from some quarters for better diagnostic tools – these calls are largely ignored because of the billions of dollars spent on PSA tests.

I’ve mailed Fred apologizing for including the incorrect Link on his entry. The correct address is http://www.yananow.net/Mentors/FredB.htm

Talking of PSA levels, I received an interesting update today from Trueman Seamans. He was diagnosed almost 10 years ago with a PSA at a staggering level of 4,212 ng/ml – that is Four thousand two hundred and twelve!! When he didn’t send me an update about 18 months ago, I made some enquiries and it was thought that he had died, so I recorded that on the site, while leaving his story intact because it is such an extraordinary one. Well, I was wrong about his death and his story is one that should give us all a bit more hope.

I haven’t uploaded the latest news yet, but will try to do it later today or, more likely, tomorrow. It’s as hot as….here today and I don’t operate well in temperatures about 30C. My cardiologist tells me it’s the Beta blockers I’m taking to keep my heart going.

All the best,

Terry in Australia

Re: Newly diagnosed, T1C

Hey Terry?

Thanks for the PSA info, putting me right, but I could hardly take it in after reading on and finding TRUEMAN IS WITH US!!
WOW! THAT HAS TO BE THE BEST NEWS I HAVE EVER READ ON THIS SITE!!!!

I'm happy...and stunned. When the temperature drops a bit there in Oz, you gotta give us the full story.
AMAZING...FANTASTIC!

George


England.

Re: Newly diagnosed, T1C

Terry,
I have just read Trueman's update. That great news is tempered now with awful sadness about the tragic loss of Trueman's youngest son.

Trueman's story was the spur which got me fighting my bad prognosis, and my wife and I have constantly re-read that story of his journey against seemingly impossible odds.

Our thoughts are now with Trueman and his family that they may all find comfort and peace.
We are deeply sad at heart to read of his loss.

Warmest Wishes,

George and Lynn,

England

Re: Newly diagnosed, T1C

Just to follow up my original concern. I dont think I was clear. Forgive me for I am a little excited. My first concern is not the PSA but the amount of cancerous tissue found on the biopsy. Margin for error to the postive and all. 1% of one core does not seem a lot. If they found cancer, is it likely that its accurate or likely to be more. My biggest fear is to having the surgery and they say ooopss No cancer. My original Doc is the weakest link. I dropped him like a hot rock. All my further opinions were by very good Doc's all base their treatment on this Biopsy done in an office with crude if you will environment.

Re: Re: Newly diagnosed, T1C

Sorry we didn't answer your original concerns adequately, Frank.

Can I suggest you read two bits by PCa author and activist Donna Pogliano. The first was in response to a man with a very similar diagnosis to yours and it can be found at http://www.prostatecancerwatchfulwaiting.co.za/oo.html

Never one to mince words she opens up with this little salvo From what I'm reading here, you're thinking of undergoing local treatment for one silly millimeter of prostate cancer?


If what you posted about your situation is correctly stated, this is what is meant by "insignificant disease". When they talk about prostate cancer being overdiagnosed and overtreated, they're talking about YOU!


The medical profession may have lured you into the medical mill with a positive biopsy, but you DO still have the option of removing yourself from the treadmill of diagnosis-by-biopsy followed by immediate-local-treatment. I'm sure that either a surgeon or a radiation oncologist would be delighted to treat you because if they only treated patients with your extent of disease their stats would be lookin' REALLY GOOD!


Another of her many excellent posts is here http://www.yananow.net/newbyadvice.htm which she conlcudes with:

So, start educating yourself further. You have time. You don't need to rush into a treatment decision you may live to regret, particularly if your staging to determine extent of disease is not yet complete. There are other treatment options including other forms of radiation, other combination protocols, androgen deprivation therapy as primary treatment and a whole bunch of stuff to know, some of which is essential and some of which is relatively more optional. At minimum, you should:


- Have your Gleason verified by an expert
- Answer the question: Do I really need to be treated or am I a candidate for giving Watchful Waiting a try?
- If immediate treatment is indicated based on thorough staging of the extent and nature of disease, be sure the procedure is done by an expert.
- If you are considering local treatment you need to be fully informed regarding the details of how the procedure is conducted, what the side effects are, what the probability of recurrence is likely to be, what the financial ramifications of your treatment are and how they will be handled, and what salvage options are available to you if primary treatment should be unsuccessful.
- If you are considering a form of local treatment you need to know how your present age, other health issues, urinary status and priorities figure into the equation.

Proper selection of the patient for a treatment protocol, proper preparation of the patient for the treatment protocol, and minimizing side effects and maximizing the potential for successful treatment by enlisting an expert physician are essential elements in our attempt to optimize outcomes.


Hope this is more helpful

All the best

Terry in Australia

Re: Newly diagnosed, T1C

Thanks again Terry. This site has been very useful to me and my family.

Frank

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