Just getting started

Dear 41,

I just joined up here so I could reply to your post.

I was 43 when I got the first slightly-raised PSA-score and 45 when I had my RP in June 22, 2007. The issues of incontinency and impotence seemed even more important for me than the bigger issue of surviving the cancer, so I know exactly how you feel. I tried very hard to find age-specific information on survival and potency/continency rates and found it very difficult.

I can only echo all the posts here indicating how important the choice of surgeon is. I spent a lot of time researching and speaking to a range of people from the top hospitals here in Germany. In the end, I chose someone who combined LOTS of current experience, research in relevant areas like nerve-sparing and who was very personable and seemed to take a direct interest in me and my individual situation. Not only is looking around carefully critical for the outcome of the surgery, it gives you a sense of control over the situation where otherwise control seems to be taken from you as soon as the diagnosis is given to you. I saw this as the most important single decision I would make this decade. I had a lot of anger and frustration, but parallel to this I could be rational and careful in making the decision.

So that you don't lose hope: my outcome just 1 month after surgery is beyond my wildest dreams. I was continent immediately after removal of the cathether (9 days post-op). In Germany, treatment with PDEs (Viagra, etc.) starts on the evening before the operation and continues for 3 months in small doses. As they said to me, "this is to keep the tracks working even if the trains aren't running at the moment." During the first night after the removal of the cathether, I woke at 2am with "half an erection". It was painful and I had to get out of bed to make it go away, but I was the happiest man on earth. In the following week, I had several erections and within 3 weeks of the operation had the first tentative sex. Apart from being nervous, this was not bad at all and has become great. Maybe I'll give more details of this in another post, but I wanted to jot this off to say:

- don't lose hope
- make the best informed choice you can
- your relative youth will be a big help in your recovery

All the best to you.

I had to post again, because the statistics in the article I read were odd. I wonder how others have interpreted it, which is why i posted the link. The article says, "Men whose doctors had peformed the surgery only 10 times in their careers were about 70% more likely to suffer a recurrence of prostate cancer within five years than men whose surgeons had performed it 250 times."

Then the article goes on to say that "17.9 percent of patients of these less experienced surgeons had their cancer return, compare to 10.7 percent of patients of the more experienced doctors." To me that seems like a 7% difference. Is the 70% a typo??? I'm confused by the article.

Helpful Hint:  After signing in... Click on  41diagnosed  in left hand column to take you directly to e-mail information. 

Post Edited (bluebird) : 7/28/2007 11:21:17 AM (GMT-6)

Thanks Puget,

I'll check it out.

New to Forum - just diagnosed on Tuesday. Age 66, PSA 2.7, Gleason 6 (3+3). Have spoken at length with my Urologist. After extensive reading and discussions with friend who is former Chief of Urology at prominent hospital I believe I will go with Robotic procedure. And this is what my Urologist and friend would do if they were my age with my current state of health. I am very active and expect to live out my life expectancy at the very least, which is one of reasons for surgery. My biggest issue as you all have had is, who do you chose as your doctor. I have several doctors who I am going to see including at U of Penn and Jefferson in Philadelphia and at Washington U - St Louis. I cannot decide who to consult with at Johns Hopkins. Doctor Su is booked until end of year just for an appointment. I welcome any input from you all on your recommendations. I live in Phila area but want to go to the best available doctor. Is it practicable to have surgery out of town with post op needs - your experiences would be appreciated. Thanks.

Thanks 41 - I appreciate your thoughtful reply. After I posted I realized I should have started own posting. Your experience with doctors telling you to take time is the same as mine. Good luck to you - I will follow you progress. 

Doug,

You could be my son. I'll tell you what I'd say to him:
1. Whatever you need to express, whatever you're feeling (and that will vary from day to day & maybe even moment to moment) it's good to say it here.
2. Take control - you have the power to do so. Take it.
3. As you can see, everyone is willing to help and wants to see you do well.
4. This is treatable.

I'm sorry you're here.
I'm glad you're here.

All the best,
Susan (Don's wife)

Doug,

In a recent post you had the following:

Then the article goes on to say that "17.9 percent of patients of these less experienced surgeons had their cancer return, compare to 10.7 percent of patients of the more experienced doctors." To me that seems like a 7% difference. Is the 70% a typo??? I'm confused by the article.

The math that is used to get to the 70% is as follows:

(17.9 - 10.7)/10.7 X 100 = 67.3% rounded up to 70%.

It seems like it would be obvious the more experienced have better results this just quanitifies it.

Tamu

After reading Tony's "resurrected" thread, I went back and read my own first post just over a year ago.  Wow, am I ever in a different place today. What a difference a year makes!  And thanks to all for your support helping me get to where I am today.

For new folks to this forum, the support and concern at this forum is so real you will feel like you've gotten a whole new group of friends.