THE IMPORTANCE OF BEING YOUR OWN ADVOCATE - PLEASE READ!

Thank you for posting.

A.

Hey Susan,

Great article!

Without this forum, I would not have had a clue of how to be my own advocate. I would have believed everything my uro told me been a zombie by now from low testosterone. Some doctors are great at treating disease but not worth a hoot at treating the patient. I am constantly impressed by the amount of research some of our members do and by their knowledge of PCa. I don't have the patience to do that. However, their encouragement to get second and third opinions on any phase of this problem is what led me to the solution to my post-op problems.

The word is "if it doesn't sound right or feel right or seem to fit your situation, go ask somebody else." I have the utmost respect for doctors but they are no longer gods....

Jim

Friends,

Susan, the article was excellent.  It was a bit of a surprise to read the finding that so many prostrate cancer patients are being "overtreated" with surgery and radiation and not considering watchful waiting.  Perhaps this interpretation of the data was over-simplified.
For example, my diagnosis indicated watchful waiting was an option for another year or so. 
However, my post operative biopsy indicated it would have been a VERY risky gamble.

The decision tree should not be weighted toward the path of least resistance but rather toward "informed choice" and the personal circumstances (e.g., co-morbidities, available resources, available support network of family and friends, etc.) of each individual patient.

Jim and Tony focused on the most important aspect of the article:
  Even if your diagnosis and choice is obvious,
   get a second opinion from the most qualified physician you can. 
  Otherwise, you will never know what you never knew....

Sincerely,

C^Cedar
ICTHUS!

Having to decide myself on my treatment was unerving at best.  However, Virginia Mason in Seattle does a great job with setting you up with specialists in different fields to give you their opinions on what to do.  This forum also gives you other ideas.  I've been pleased with my care, even though other things like "proton therapy" wasn't available up here.  I've always had the mindset to attack this cancer aggresively and that's what I'm continuing to do.  I admit, having a poor pathology report hit me like a ton of bricks, but I'm looking to complete irradication following my radiation treatments starting the end of August.  One month of hormones so far with no side effects.

Bump up!

When I began posting here, I was about to have biopsies done on the prostate and also in my mouth.  The results of the oral biopsy was that it was not cancer.  This was good news, and with the exception of a new prescription, that was that.  The original problem with the mouth is much better, to a point, but recently has been getting a little worse or at least not going away.  I should known better, but I finally realized that I had never researched this new medicine so I did and found that it is used to treat erosive OLP.  What the heck is that?  Well now I know, and it may as well be called cancer.  Not only is the medicine prescribed for this problem, but the symptoms describe me exactly.  Although my job deals with medical problems I have zero formal medical training, but I believe that my dentist and the oral surgeon, not to mention my gp, should have all been able to take one look at me and know exactly what was going on.  I wasn't supposed to see the oral surgeon again until January, but I will be seeing him again next week.  Now that I know for sure that I have prostate cancer I would never minimize it's seriousness, but I will say that erosive OLP may potentially have more serious effects on me than PC.  My wife has learned that the brother of a coworker died from this.  I went through this story to point out that you are in charge of your body and, like the person in charge of a business, you better know what's going on.  You are reading this and that means that you have access to a computer.  Use it to research medicines, symptoms, any medical terms that you don't understand and question, question, question.  Most of you probably know what a round tuit is.  I have one in my desk drawer and it isn't doing me a bit of good.  Please don't wait until you get a round tuit.  Do it now!

Thanks, Susan! This article reiterates that we have to become investigative reporters to dig out the best resources and then review all the options. This is one point that has been made before - it's not always the best known and largest facilities that can provide the care that's right for you. I know that last year, some of the more well-known names in our state were still a little "slow" to recommend robotics. Some were even difficult to contact; i.e., calling and being referred to a web site to make an appointment. Once we made our decision, we kept looking until we found an absolutely exceptional doctor, team and hospital.