Prostate Cancer Survivors

 

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Re: Update from February, now a kidney problem.

Hi Alan,

Yes, you're quite correct when you say I've chosen the wrong specialist. But as my local doctor said when I asked her for an alternative to my grumpy yet efficient expert, all of her colleagues will give me the same response. In other words, they are a hammer looking for a nail, and not a screw.

When I asked for a sympathetic specialist, I'm probably looking for support in the wrong area. What I acknowledge is that I really want an expert with opinions that match mine. And that is idealistic, and probably in the realm of alternative healing which I'm not prepared to consider.

You are also right when you label my condition as conservative and good to continue with AS. I feel that too, but there's a large part of me weighing up the value of specialists who have made the prostate their life's work on one side, and people like me who depend on statistics to verify our position on the other.

The prostate and its dealings is an emotionally charged subject filled with indecision, opinion and a small amount of witchcraft.

I have no desire to validate my decision with x years worth of fulltime study - I prefer to hire experts in their field. They are mostly of one opinion - so it is hard to know where to turn.

Your recommendations are very useful, and I'll take some time looking them over again and plotting my course.

Re: Update from February, now a kidney problem.

Hello again Kevin,

In your last post, you made the following two statements: "…but as my local doctor said when I asked her for an alternative to my grumpy yet efficient expert, all of her colleagues will give me the same response", and "…there's a large part of me weighing up the value of specialists who have made the prostate their life's work on one side, and people like me who depend on statistics to verify our position on the other".

In response to theses statements, I believe that you have the mistaken impression that those doctors highly trained in the field of prostate cancer do not support AS as a strategy. While it may seem like that after talking to your local doctor and surgeon, just know that there are many highly respected prostate cancer doctors out there that do not think the way that they do. For example, there is Dr. Mark Scholtz (who wrote "Invasion of the Prostate Snatchers") and Dr. Charles "Snuffy" Myers, just to name two. You can also add the many doctors associated with the NIH conference on prostate cancer, as well as the doctors who helped draw up the NCCN guidelines for prostate cancer. The results of the conference and the NCCN show a strong support for AS for those patients who meet the guidelines. I should add that there are certainly doctors at the local level that support AS as well, including my own urologist. So, if you go out and find one, you are likely to come away with a different perspective.

Lastly, IMO, differing opinions is not a reason not to get a second opinion. Quite the opposite. It is THE reason for getting one. If the results, confirm that you are a Gleason 6, then you can rest a little easier. (I say "a little easier" because, as you've probably read, one-quarter to one-third of tumors diagnosed as a Gleason 6 were found to be a higher grade after being surgically removed). On the other hand, if you are Gleason 3+4, then that still meets some of the more liberal guidelines for AS, but it does put you into the medium-risk category. If you are Gleason 4+3, then AS is simply not recommended. You say "…but I wonder at this stage of the prognosis how much difference I will need from them to make another decision". That is the question that you need ask yourself if the results come back with a different grade. In other words, you need to assess how much risk you are willing to take based upon, among other factors, the number of good years you feel you have left. Also, if the results come back different, I would (and have) sent the slides out for a third opinion. It is not something that you should hesitate to do since it is, after all, your life (and quality of that life) that we are talking about. In my case, the third opinion was pivotal in my decision to stay on AS. Keep in mind, too, that the doctors reading theses slides are only human in that they can have bad days, or worse yet, they could have finished at the bottom of their class in school.

I hope this follow-up has helped.

All the best,
Alan in the USA

Re: Update from February, now a kidney problem.

Hi Alan,

You certainly have a lot of alternatives to select from, and perhaps I should have explained that I'm from New Zealand. The number of experts here therefore are limited, and there are no AS enthusiasts I know of so far. I could travel, but in my experience it's difficult to keep up a dialogue from halfway round the world.

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