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  • Opinions are OK, but please provide as much factual evidence as possible for any assertions that you are making

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Re: Any opinions please

Hi Mike,
Sorry to hear about your diagnosis. My PSA happened to be the same as yours (7.9) when I was diagnosed with a GS8 tumor a year and a half ago when I was 68. Based on your history I would be very surprised if the Bone Scan or MRI showed anything.
I would recommend the first thing you do is get a second opinion on your biopsy grading. There are some great labs referenced on this site. I used Oppenheimer's lab in Nashville. They took Medicare's payment in full. (GS8 was confirmed).
Next thing is to thoroughly read this website. Terry has compiled a truly wonderful resource. Assuming the GS9 is confirmed, at your age I would say that some form of treatment is indicated. Deciding which treatment will be your hardest task. You need to spend the time learning about all your possible treatments and once a treatment is selected you must find the facility is the best in performing this treatment.
Besides communicating with mentors on this site I would strongly advise finding a local chapter UsToo Prostate Support Group and attend a few of their meetings. Talking to these guys who have to live with the side effects of the treatment they chose with give you much to think about.
Personally, I chose proton therapy at UFPTI and was very pleased with the treatment and the resulting lack of side effects. While I am a big proponent of proton therapy, you will have to decide what would be the best treatment for you.
Good Luck to you and remember there are lots of guys out there who know a lot about this disease who are more than willing to share their experiences.

Re: Any opinions please

Congratulations on your current approach Mike – or what appears to be your current approach of calmly collecting and collating information. There is one area I’d like to comment on:

The Gleason Score is one of the main drivers in making a treatment choice. It is therefore imperative, in my opinion, to get a second opinion from the best pathologist you can find – some of the suggested ones are here RECOGNISED EXPERT PATHOLOGISTS . It is especially important now because of the changes that have been made in the grading process and the application of the grades. There is a brief explanation of this on the DIAGNOSIS page (just page down to read it). What I did not mention in writing this brief and simple explanation was the proposal to move away from the two historical calculation of the Gleason Score where two foci were used to the proposed method where three foci were used. I omitted this because there was no agreement on the three foci approach, which was bound to lead to some confusion and which apparently was not accepted by the majority of pathologists.

So perhaps a little further explanation will help here. Historically, to foci were used to grade the material obtained in the biopsy needles. Where between 51% and 95% of the material appeared to be a specific grade, this was the primary grade; between 5% and 50% was given the secondary grade. The two grades were added together to give the score and expressed as, for example Gleason Score 7b (4+3). This could mean that up to 95% of the material might grade 4 and as little as 5% of the material might be grade 3. Or as little as 51% grade 4 and 49% grade 3.

The proposed change – to bring in the tertiary focus – was not clearly enunciated in the papers I have seen, but essentially recommended that if any amount of higher grade material was seen in the biopsy samples, it should be recorded. So the recommendation was that if a biopsy result previously graded 7b (4+3) had an element of grade 5 material would now be shown as 9 (4+3+5).

The reason I am going into this in some detail is because there is a very different attitude and treatment recommendation for a GS 9 tumour and a GS 7b tumour. That is right if the Gleason Score is a 9 based on the historical 4+5 or 5+4, but there is very little evidence that a 4+3+5=9 or a 3+4+5=9 requires the same drastic approach as these aggressive historically graded tumours.

I think it is very important to establish just how much material in the sample is classified in each of the grades – and to check that a very good second opinion agrees with that before any decision is made.

Good luck

Terry in Australia

Re: Any opinions please

Thank you all so much for your advice/comments. I am in the UK by the way. Forgot to tell you that in original post.
I will certainly be looking into my Gleeson score. As you say '4 plus minor bits of 5 and 3' can be interpreted in two ways, or maybe even three. One would, as you say, need the percentage of each to calculate.

A month ago I knew nothing. I now know a bit more than nothing. The internet can be very useful - but also confusing.
There are so many opinions out there.
Thank you all again for taking the time to help me. Much appreciated.
Cheers
Mike

Re: Any opinions please

Mike,

Sorry to read of your case but please remain positive. I had worse numbers than you (in the UK) over five years ago and I'm fine. I expect you will find no evidence of mets - there was no evidence in my case. Doesn't mean there aren't any mico-mets, just means that they can't be seen, though at your PSA level it may be too early for the genie to have left the bottle. I imagine you'll be given a month of Casodex and then put on 12-weekly Zoladex jabs. These do kill your sex life but also keep the cancer at bay. Life does go on, largely unaltered, you will adapt and there is a very good chance that you will live a normal life span.

If it helps (but it may be a bit scary) take a look at my story on YANA and email me if you want to have a chat off-line.

Good Luck.

Ed

Re: Any opinions please

Hi Ed
Thank you so much for the offer of a chat. I have read your story - quite a journey!
It is heartwarming to know of such people as yourself that are willing to be of help to others while being on such a journey themselves. I hope I will be able to do the same when I feel I know enough to be of some use.
I tried to email you but can't make it work. Please do email me so we can have a chat on the telephone maybe - both being in the UK.
I wish you and your wife the very best and thank you once again for your kind and supportive words.
Take care
Cheers
Mike

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