Jeff Lowe's Story

[Guest Jeff]

• 
  I am 80 yrs old, had an RP in March,1999, followed by 6 months ADT, was not incontinent had no pain afterwards. Ultra-sensitive assay last March 2011 shows undetectable PSA.
  My story starts Oct95 when a routine check showed a PSA of 16.7. My GP said - well, your last one was 8.6. My records had been sent to him from my previous GP whom I had left because he displayed extreme reluctance to answer my questions; I recall that the blood in my urine had been the reason for the blood tests in the first place. So, No, I didn't know of the 8.6 reading, nor would I have had any knowledge of what it meant!
  Anyway David, my new young GP advised me to return in a couple of weeks to discuss what to do next.
  Now, people die from cancer don't they, prostate cancer too?
  So I searched in the Mackay Public Library and found one single solitary book to do with PCa. I was very lucky however, because it was written by a journalist in Florida who had just been through the experience, and his advice was....PCa is not likely to get up and kill you tomorrow, so take your time and FIND OUT ABOUT IT. I understood this, maybe because I am an engineer?
  At this time we had a Toshiba laptop that my wife used as a typewriter, you remember they used one floppy disk to boot up and to record data!! I'd used it on my last job to write specifications. But the Internet had just become available in Mackay, and we spent $100 to buy a modem and hire an ISP; probably the very best $100 I've ever spent.
  Yahoo was the search engine then, good enough to put me onto Physician-to-Patient(P2P) a website where one could get opinions from doctors specialising in PCa. I've just looked them up with Google and they seem to have gone out of this business in 2006. But they were going strong in '95 so I subscribed (free); this was the very best thing I could have done because I read real-life accounts of how other men were coping, plus learning about Gleason Scores, various methods of staging PCa, ADT and other Therapies, the pros and cons of RP's vs Seeds vs Radiation etc.
  It appears that the material (emails) has been archived and that one can get to see it, which is something that I would recommend for those with an enquiring mind.
  A Dr Strum was running P2P from his surgery in Los Angeles, and was the principle contributor.
  He said, many times, that there are two kinds of surgeons, butchers, and artists ! And advised patients to check them out; for instance how many RP's do they routinely perform, what's their record regarding incontinence, have they published any medical papers, etc.
  Meanwhile David had organised a Biopsy in Mackay, that was negative, and my PSA rose to 17.5 in 3 months. So he referred me to the nearest Urologist who over the next 2 years did 2 biopsies, put me on antibiotics, suggested waiting until the PSA rose >27 before the next biopsy (it was 21.9). He gave me the impression that he resented my research. My GP held the reverse opinion and had no hesitation referring me to a Prof. Kaye at the Urological Research Centre, Sir Charles Gairdner Hospital in Perth. I had decided the time had come to make enquiries for a well-recommended Urologist, and asked a man in Melbourne who's case I'd been following on P2P who'd recently had Seeds - wish I'd made a note of his name, but he couldn't recommend Prof Kaye highly enough.
  Prof Kaye was not at all reluctant to answer my questions - yes he'd written several papers, did both Seeds and Radicals, a total of several PER WEEK. His record on incontinence was outstanding. They did their own Biopsies and pathology. He took 5 hours for my operation and I used all those nappies we'd bought to wash the car when we got home!
  I wish that there'd more support in the 90's. Things are hopefully different in Mackay today.
  

[JimJimJimJim]

Jeff

Welcome to our online community.

Your story of late recognition of your prostate cancer is not unknown among the members of this online community.

Unfortunately, the happy ending you had is not often the result others have had.

Your story also raises the important point that most of us have come to - you need to educate yourself so you can ask your doctor the right question, and understand your doctor's advice.

Dr Stephen Strum whom you mention probably contributed more to this patient awareness than any other doctor on earth.

His book with Donna Pogliano - A Primer on Prostate Cancer: The Empowered Patient's Guide - while getting dated now 9 years after publication, remains the most comprehensive book on the disease.

The P2P newsletter did not finish in 2006, though Dr Strum's contributions have been limited since an injury sometime during the last year.

Most of the replies to the list are made by Dr Barken, but Dr Strum still contributes occasionally.

Dr Strum's last contribution to the list was yesterday (Saturday 5 November 2011).

You can subscribe to the P2P list at:

http://www.prostatep...an/listinfo/p2p

Many thanks for your contribution Jeff.

Jim

[Guest Jeff]

Yes, I would have thought that educating oneself is paramount.

But, you know, most men seem to dis-engage at this point, saying "ah, leave it to Doc".

Then there seems to be a small group who get into a flap and rush around seeking out all those "alternative" remedies; a chap that I knew in Mirani would come to us for his supply of paw-paw leaves that he'd boil up to drink the juice....he's dead now.

The minority seem to gravitate to a few sites like p2p.

I feel that this site might also turn out to be similar, hope so; when did it start up?

Cheers

Jeff

[Admin]

Jeff

Those "alternative" people, in my experience with this disease and another disease, mostly are eventually forced by their disease to recognize that things are not working.

Some of these (and I have witnessed this personally in another disease) go to an early death because of it.

Re: Our start date.

We still have not had our official opening.

However, at the top of the page, just under the blue ribbon, is the Members menu.

Just above the first name you will see buttons that say:

Member Name, Post Count and Join Date

Click on Join Date

and the members list will be put in date of joining order, and you can see our long history yourself.

Cheers

Jim