Medical Forum / Diseases and Disorders / Prostate Cancer / January 2004
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Cox SMTP west - 11 Jan 2004 17:13 GMT Thanks for all your informative posts - enjoying (as best I can under the circumstances: dx 12-16-03 (my 58th birthday) one sample of 12 Gleason 6 (3+3) PSA 3.8 3-02 PSA 4.1 3-03 Biopsy of 4-03 higrade PIN PSA only 1.5 prior to 12-9-03 biopsy thant found PCa
Optomistically considering RRP, and my big question (while reading Walsh) How do you find the artistically gifted experienced surgeon to get all the cancer, spare the nerves and restore contenance with the great track record? I'm in Tucson Arizona, but it seems worth the expense to travel. any and all thoughts will be greatly appreciated.
Tony in Tucson
Wakeley Purple - 11 Jan 2004 17:30 GMT > Thanks for all your informative posts - enjoying (as best I can under the > circumstances: [quoted text clipped - 13 lines] > > Tony in Tucson We're practically twins by the numbers. My wife works at a local (Louisville KY) hospital and knows the reputations of doctors in the area. So far she's picked the urologist and the anesthesioligist that will do my RRP tomorrow. I guess they rate these people by the results they have to deal with post-op. The urologist turned out to specialize in oncology and is one of the most respected in the area.
My unscientific opinion is that the variability of experienced urologists is less than the variability of the PCa. So it's more important to decide what you're going to do than who's going to do it.
Sorry you've found a need for this group, but welcome.
 Signature Wake
Age 58 PSA 3.8 Biopsy positive 5% in 1 of 10 cores Gleason 3+3 T1c RP scheduled 1/12/04
johng - 11 Jan 2004 18:46 GMT > My unscientific opinion is that the variability of experienced urologists is > less than the variability of the PCa. So it's more important to decide what > you're going to do than who's going to do it. I'm not so sure about that. When it comes to doing surgery, my understanding is that the skill of the surgeon is very important, and that there IS considerable variability. Just consider the variation in time for removal of the catheter. It ranges from just a couple of days in some places to three weeks at others. There is variation among patients, too, but it seems to me a lot of this variation is due to the skill level of the surgeons.
The surgeon who did mine told my hospital roommate that he was glad he had been the one to do his. Something about the guy having thick or hard veins. The implication was that some surgeons would have had a hard time dealing with that.
I DID go shopping for surgeons, and am glad I did. From what I had read on the web and in a book that my urologist had given me, I got the idea that who did it was very important.
I think for radiation, the skill level of the practitioner isn't quite as important.
When I was trying to find a good a place for treatment, I complained to a couple of physicians that I couldn't find these guys' batting averages on the sports pages. Well, that didn't get me the answers I wanted, either. I think it's considered bad form for people in the medical community to badmouth each other. So I tried to do some reading between the lines when getting advice. Maybe I read wrong. But I also asked the surgeons about how many of these operations they did. The one I chose even bragged a bit on his web site about his record, and tried to sell me on how good he was (in a professional way, of course, and he didn't want me to rule out other possibilities for treatment, either). But I found reasons to believe he was as good as he seemed to think he was, so I went with him. Then I had to get in line and wait six more weeks. I was told by a physician friend that the fact that he had a backlog like that was a good sign.
My impression is that there are quite a few really good surgeons out there who do this surgery with the nerve-sparing technique. I didn't see any reason to try to find the best one in the country, and I don't have the means to do anything like that, anyway. But I did think it worth while to try to get one of the good ones.
JohnG
Wakeley Purple - 12 Jan 2004 03:28 GMT > But I did think it worth while to try to get one > of the good ones. I agree completely. I feel confident about my doctor for many of the same reasons you mentioned. I'd just hate to see somebody spend all their time searching for "Dr. Right", and not learn how to pick a good treatment method for them.
 Signature Wake
Age 58 PSA 3.8 Biopsy positive 5% in 1 of 10 cores Gleason 3+3 T1c RP scheduled 1/12/04
JohnG - 12 Jan 2004 04:18 GMT > > But I did think it worth while to try to get one > > of the good ones. [quoted text clipped - 3 lines] > searching for "Dr. Right", and not learn how to pick a good treatment > method for them. Good point.
I went to the University of Michigan for a 2nd opinion, and that's where I got my surgery. But they wouldn't let me make an appointment directly with a surgeon. I first had to make an appointment to go to their Thursday clinic for people who have been diagnosed with PCa, where they made sure I talked with both a surgeon and a radiation guy. They maybe offer other options, too, but it turned out those were the ones they wanted me to consider.
It took several weeks just to get into the Clinic. My alarm-sounding PSA (4.79) came on 11-Sep-2001. By mid October I had a diagnosis of PCa (T1c, Gleason 3+4, I think). The urologist (a surgeon) recommended surgery. I wanted a 2nd opinion, but I wasn't sure how to go about it, and wasted a couple of days wondering what to do next. Then I found the UofM web site, and knew from that just who I wanted to do my surgery.
But there was a long wait getting into the clinic. They held their sessions for prospective new patients each Thursday afternoon, and I had to wait until mid-December to get in. The wait made my wife nervous. I remember the day pretty well. A day or so before, I had learned that my biopsy slides hadn't reached the proper destination, and I was nervous wondering if they would make me do another biopsy, which would mean more delay. But the slides were eventually tracked down -- they had been delivered to a completely wrong address on campus. Then we had some car trouble from a previous repair. My wife insisted that the dealer/shop get it fixed right away so we could make it to Ann Arbor in time for our appointment, making it sound like a life and death matter.
In Ann Arbor, after talking to everybody we were supposed to talk to at the clinic, including the surgeon and radiation oncologist, we decided on surgery. There would be another 6 week's wait. (Actually, they insisted that I think about it for a couple of days before deciding.) My wife was nervous about waiting yet another 6 weeks. The surgeon said if he thought it really necessary for me to have my surgery right away, he would find some way to do it. But I didn't see that I had any grounds to try to push my way in front of other people who were waiting in line. And in the end my post-surgery diagnosis pretty much matched the pre-surgery one.
Anyhow, that should give people an idea of how at least one shop operates. Maybe it'll be helpful to someone as a point of comparison.
JohnG
Wakeley Purple - 16 Jan 2004 01:30 GMT > I went to the University of Michigan for a 2nd opinion, and that's where > I got my surgery. But they wouldn't let me make an appointment (snipped lots of scary stuff)
> in line. And in the end my post-surgery diagnosis pretty much matched > the pre-surgery one. [quoted text clipped - 3 lines] > > JohnG Man, you've went through the ringer on this one!
I feel lucky about how mine has worked out. So far no major "issues". I'll post a post-op report.
 Signature Wake
Age 58 PSA 3.8 Biopsy positive 5% in 1 of 10 cores T1c, Gleason 3+3 RRP 1/12/04 Pathology agreed with biopsy Negative margins
JohnG - 16 Jan 2004 14:57 GMT > Man, you've went through the ringer on this one! You're back! And with a good pathology report, too. That's good to hear. Your numbers are looking good all around.
Actually, things have gone so well for me that I'm almost embarrassed to be hanging around this newsgroup among people who have had to put up with so much.
Today was supposed to be the day I got my two year PSA results, but the doc has postponed me for a week. Did my blood work Monday, along with my other annual samples. As instructed I had gone without eating or drinking (except a few sips of water) so naturally when I got there they wanted a urine sample. This has happened before, so I should have remembered not to be so completely voided by the time I got to the lab. I started to grumble, but then thought, hey, after RP there's no more bashful bladder. If there's any liquid at all in the bladder I should be able to let it out. And I did! It wasn't much, but it fulfilled the requirements. It was never that easy before the RP.
You can think about that each time you get disgusted with your catheter.
> I feel lucky about how mine has worked out. So far no major "issues". I'll > post a post-op report. [quoted text clipped - 9 lines] > Pathology agreed with biopsy > Negative margins JohnG
Wakeley Purple - 18 Jan 2004 17:29 GMT > Actually, things have gone so well for me that I'm almost embarrassed to > be hanging around this newsgroup among people who have had to put up > with so much. I have the same feelings, but I try to remember that I was *greatly* encouraged by the successful stories, including long-term followup.
I think most of the contributers with less happy outcomes get satisfaction out of knowing they are helping people get effective treatment and increasing the number of cases like ours.
 Signature Wake
Age 58 PSA 3.8 Biopsy positive 5% in 1 of 10 cores Gleason 3+3 T1c RRP 1/12/04 Pathology agrees with biopsy Negative margins
Steve Kramer - 12 Jan 2004 01:26 GMT Good luck tomorrow, Wake. We'll be thinking of you.
 Signature Prostate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .3 .4 .8 EBRT 05-07/2002 @ 47 PSA .3 .2 .2 .2 .3 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .1 Lupron 7/03, 8/03, 12/03
> > > Thanks for all your informative posts - enjoying (as best I can under the [quoted text clipped - 27 lines] > > Sorry you've found a need for this group, but welcome. Wakeley Purple - 12 Jan 2004 03:57 GMT > Good luck tomorrow, Wake. We'll be thinking of you. Thanks, it really helps.
 Signature Wake
Age 58 PSA 3.8 Biopsy positive 5% in 1 of 10 cores Gleason 3+3 T1c RP scheduled 1/12/04
John Loomis - 11 Jan 2004 17:44 GMT Hi Tony, Sorry for the news, but at least you can do something about it. I was dx'd in sept,99 RRP Nov. 99 You can look up in the yelllow pages under Prostate Cancer and or Urologist's specializing in Prostate Cancer! I travelled 250 miles to get surgery done @ Stanford University in Calif. from Dr. James D. Brooks is an assistant professor and a Urology Dr. who studies Prostate Cancer. You can call him and see if he knows of a Dr. in your area that can handle the surgery. I know most Dr.s who work in related fields probably keep in touch with each other concerning breakthru's. a. 650-723-6024 o. 650-723-3745 f. 650-723-0765
jbrooks@stanford.edu
Good wishes and keep us posted. John Loomis
> Thanks for all your informative posts - enjoying (as best I can under the > circumstances: [quoted text clipped - 12 lines] > > Tony in Tucson dale.j. - 11 Jan 2004 18:28 GMT > Thanks for all your informative posts - enjoying (as best I can under the > circumstances: [quoted text clipped - 12 lines] > > Tony in Tucson A very good question. I could recommend one here in the Minneapolis/StPaul area, but I have no information for Tuscon. This is a difficult thing finding a top notch surgeon.
I do have a freind living in Tucson and working for Raytheon, but he's a doctor of electronics.
Dale J.
 Signature Email: dalej2@mac..com
johng - 11 Jan 2004 19:02 GMT > Optomistically considering RRP, and my big question (while reading Walsh) > How do you find the artistically gifted experienced surgeon to get all the > cancer, spare the nerves and restore contenance with the great track record? > I'm in Tucson Arizona, but it seems worth the expense to travel. any and > all thoughts will be greatly appreciated. One good sign would be that the physician trained under Walsh. The ones who did will probably make sure you know that.
One disadvantage of traveling far to do your surgery is that if you need followup care, the folks close to home might not want to deal with you afterwards. In other words, you might be looking at more than one trip.
In my case, I got a good surgeon, but he has now (2 years later) moved away. He calls it a good career opportunity. He's now director of a prostate cancer center at Harvard, which, to read some of what Leonard posted, perhaps was in need of such a person. But if I end up needing followup care, it'll probably be radiation and he wouldn't be the person to do it anyway.
It doesn't hurt to ask prospective surgeons how many of these operations they do each year, and where they got their training. I can't tell you what all the "right" answers will be, but the answers can be informative in ways you might not expect.
JohnG
Alan Meyer - 12 Jan 2004 03:16 GMT > Thanks for all your informative posts - enjoying (as best I can under the > circumstances: [quoted text clipped - 12 lines] > > Tony in Tucson The National Cancer Institute website has a page devoted to finding treatment resources of all types. See:
http://cis.nci.nih.gov/fact/7_47.htm#findadoc
That's their section on finding doctors.
I wish it gave, as another poster said, a list of docs with batting averages but, alas, it does not. But it does give some ideas and links on where to get info.
Beverley - 15 Jan 2004 01:37 GMT As for finding the perfect doc. Well, you can check with your insurance company - they often keep statistics on doctors. Also you could call Welsh's office and ask for a referral to someone nearer to you. You can check the internet. We found our doctor by the internet. We made an imaginary circle of the distance we were willing to travel and then began looking. We found someone within a 2 hour drive and we feel as though we have had one of the top docs in the nation in the field of brachytherapy. Bev
> Thanks for all your informative posts - enjoying (as best I can under the > circumstances: [quoted text clipped - 12 lines] > > Tony in Tucson
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