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Sorry to hear about your diagnosis. You are wise to seek a second opinion which I assume will be in Bloemfontein or Durban judging by the mileage you mention. Perhaps you might also consider seeking advice in Johannesburg where there may be more expertise?
I am out of touch with the position regarding pathologists in South Africa - last time I was living there it looked as if there would be one enormous pathologist consultancy which had taken over all the others. If that is not the case, can I suggest that you get a second opinion on the slides from the pathologist with the best reputation? I say this because grading cncer cells is far from an exact science and the Gleason Score is a major driver in the decision making process. As a matter of interest, my original slides were scored as GS 5 by two labs, GS6 by another and GS 7 by a fourth! That's quite a spread.
You ask How much time can I safely allow myself to do this research without it impacting on my cancer? . The answer to that is no one knows because there are no rules in the prostate cancer business. What can be said is that with a negative DRE and a PSA of only 7 at your age the probability of even a Gleason Score 8 tumour spreading rapidly is very low. A delay of weeks or even months is unlikely to make any difference in the outcome.
Good luck, whatever your path - and don't forget to let everyone know how you go by joining us joining us. We don't have too many SAfricans on the site!
Regarding path labs.Yes there are basically only 2 companies extermely large and in every city. I have a great friend and he was acknowledge as the finest pathologist in SA, unfortunately he left some years ago, at the time off all the amalgamations, and is now living in your great country...Gold Coast.
A little background. I have had a PSA every year at the time of my annual. It has always been below 2. April this year it was 4 so we repeated October and it was 7. GP sent me to urologist DRE he said nothing abnormal but because of PSA velocity he wanted to do biopsy. Repeated pSA 6.9. Biopsy had to wait a week because I wanted to go to the rugby Currie Cup final in Durban!!
Now here is the part that has me a little worried. Biospsy Thursday. I received account from Lab on Tuesday and Medical Aid indicated that Urologist had been paid on Wednesday and I had not heard from him. I phoned Friday spoke to his reception she said he was away so I vented my anger. He phoned me about 1 hour later and casually told me I had cancer with a Gleeson of 8. This communication has me worried. He does however have an excellent reputation here in the Lowveld. I am seeing him at 3.00pm today.
My first need will be t see if there has been any spread guess I will need scan.
The above all happened last week and since Friday I have gone through all the stages....shock et al....What do I do surgery radiaton etc all confusing. Fortunately I am fairly intelligent so have already done a lot of research.
Have you read "The Whole Life Prostate Book" by H Ballentine Carter Professor of Urology at John Hopkins published June 2012. If not get it.
This morning when I woke up I had an epiphany.....I have decided to base my decision on Quality of Life rather than Longevity.
Yes you are correct I am going to Durban 23rd to see a highly thought of Uro who performed a TURP on me 12 years ago. I also have a friend there who is a pathologist and will chat to him. I also intend going to Johannesburg to see another Uro who has a fine reputation.
I am going to see if I can get my path slides when I talk to Uro today.
Terry thank so much for your concern you are doing a great job.
I can understand the shock you would have had - and the anger at the seemingly uncaring doctor. Good to see that you have made a good recovery from that initial blow - the expression here in Australia for someone who has had that kind of news is that he looks like a stunned mullet. I guess that's what your Sharks might have felt when WP thumped them. But it was to see that you have your priorities right as far as the rugby was concerned.
As to your PSA, I'm not sure if you have spent much (or indeed any) time going through the Yana site. Even if you have you might have missed the little PSA experiment I ran ten years ago when I had daily PSA tests - that's at PSA EXPERIMENT . so PSA in itself is not the main focus.
You say This morning when I woke up I had an epiphany.....I have decided to base my decision on Quality of Life rather than Longevity. That was my decision too back in 1996 - I wrote about it here WHY I DID NOT CHOOSE SURGERY OR ANY OTHER TREATMENT . Of course I am not saying that my decision was the right one for anyone else but me - and my Gleason was 7 not 8 - but I was 54 so theoretically I had more years left than you do at 75. Now I am 70 I don't regret my decision 16 years ago.
There is a chap whose writing might appeal to you. He used to post under the name LORENZO Q. SQUARF and amongst his advice was this little gem:
If you are in your 70s, ditto, but be very fussy about what constitutes negative symptoms. If they are not all that distressful consider treating the symptoms. Think amelioration of discomfort rather than aggressive intervention, but, if ordinary stuff can't supress your discomfort, why, discuss your particulars, and especially your personal values, with a urologist who listens carefully, and who seems to care more about you than his theories of aggressive intervention.
If you are in your 80s don't play the therapy game. Period. No. Don't do it. It will destroy the rest of your life. Ameliorate negative symptoms with medication. You can probably do this in an agreeable manner for a longer time than you might imagine. Smile. You have won.
I realise you are not in your 80s yet, but seems to me you're close to the winning line in Squarf's terms.
Good luck, whatever your choice of paths on this journey we share.
If you are in your 80s don't play the therapy game. Period. No. Don't do it. It will destroy the rest of your life. Ameliorate negative symptoms with medication. You can probably do this in an agreeable manner for a longer time than you might imagine. Smile. You have won.[/i]
I'm now 80, feeling good despite a testosterone of zero during my second cycle of Degarelix (Firmagon). I can't recall if it was one Dr.Meyer's articles or videos in which he advised that men over 80 use only Casodex and Avodart. I haven't used either yet. It seems young men who use a 5-alpha reductase inhibitor grow a nice head of hair. (It makes them more attractive to women, but the can't "act on it".) I'm already sexually disadvantaged to I suppose if I were to use Avodart it wouldn't make much difference.
