New to Healing Well - Diagnosed in 2012 - Gleason 9

Hey Hawaii,

Welcome to the club no one wants to be a member of, I am a fellow G9 in my mid 50's.  Glad you got the help you needed to get you on the right track.  I recommend that you go forward learning everything you can about PCa and become you're own advocate.  Thanks for sharing your story.

Ed

Aloha Ed:

Thanks for the welcome. I spent much of my career in biotechnology management so, ever since my diagnosis, I have done a lot of reading and consults. The problem with pca is that, except for the newer drugs (another topic for another time), there is an absence of really well controlled, double blind clinical trials to support efficacy. This is why you have retrospective studies and meta-analyses of multiple trials of older drugs and treatments sometimes reaching different or even conflicting conclusions. You have to be very careful (a) what you read and (b) what conclusions you can reach. And I certainly believe you want to challenge your conclusions with the best Docs you can find.

Once I found my medical team, we put everything for which there was reasonable evidence on the table and we came up with the treatments and the sequencing of those treatments that made most sense for my statistics. Amongst my medical team, there was the treatment consensus I was looking for and that consensus was built around the proposition that high risk disease in younger patients calls for an aggressive, multi-modal response.

In terms of educating yourself about your options (access to docs, choosing docs and deciding your treatment plan), this is an excellent site. My only caution for visitors is to keep things in a proper perspective and not to let the experiences of others get you down.

Ultimately, we are the captains of our own ship and we need to be prepared to make the final decision on our treatment.

Good luck and God speed. Feel free to contact me any time if you think I can be useful at all.

Simon:

Welcome to our little club from another G9; i love to hear from positive, aggressive brothers-in-arms. Thanks for the encouragement.

Ray

Aloha Hawaii:

The Big Island is also my fav, and I try to spend many months each year there (Kawaihae).

Yours is a classical story that I also share - what are they teaching in Med Schools these days?

I agree with your philosophy. My doctors did not understand the importance of PSA velocity in diagnosing PCa and did not catch the spread of this disease as a result. Notwithstanding ordering many blood tests, they did not even mention to me the words 'PSA' or 'biopsy' or even 'cancer', even though the PSA velocity was screaming for a biopsy that probably would have caught it before it metastasized to bone.

Foolishly, I trusted my then doctors and got blind-sided by them. But my message is that I am the one to blame for not taking charge of my own health. Now I keep myself informed and have knowledgeable doctors and they let me choose my treatment.

Again with a GS 9, one uro told me that he would not treat me aggressively because to do so might 'do harm'. As you have concluded, Failure to treat Aggressive Cancer Aggressively IS Doing Harm!

Houseboy
(Sometimes it feels good to vent!)

I agree...Awesome story...

HI Hawaii:

I resided there many years ago but still keep a home there, although I think I will have to sell given this disease.

"This Disease is Going to Kill Me, unless I Die First!"

Houseboy

Thank you for sharing your story. There are some similarities in our numbers and I am glad to see that your pCA has been kept in check. Hope it stays that way for a long time.