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Posted 4/20/2010 6:20 PM (GMT 0)
Do you guys who have had radical prostectomies do your follow up visits with the surgeon who did your operation?

I left my urologist because he was inexperienced with da vinci for a much more experienced surgeon. When I told him I was going to another surgeon for the da vinci robotics, he told me in no uncertain terms, that the new doctor would be my doctor now, and all follow ups will have to be with him.

The tradeoff is I now have to travel 100 miles for a visit and the surgeon has rescheduled me three times for follow up visits, each time pushing my appointment six weeks into the future. I'm certain if my PSA's were rising, he'd make sure he would see me, but because mine have been low so far, it's not urgent. i do want to discuss ED issues with him though. Any replys would be great and thanks in advance.
Posted 4/20/2010 6:35 PM (GMT 0)
Red,

It would appear that your uro was a jerk who got his feelings hurt when you decided on a more experienced surgeon.

It was my uro that did my biopsy and diagnoses the PCa. When I told him I decided to fly 1500 miles to Detroit to have Dr. Menon do the surgery. He said I made a good choice as Menon is well known and respected.

You may have read my journey. I have done the surgery, the rad and now the medical oncologist. All along the way I have kept my uro in the loop and he will be my uro for the long run.

My advice is to find another uro. Once the surgery is done and the recovery is over, your surgeon is not the right man to keep doing your follow-ups. You need a good uro in your future. You just have to find one that cares about you and not his ego or his pocket book.

Best of luck brother,

Sonny
Posted 4/20/2010 6:39 PM (GMT 0)

Nighthawk,  My experience was similar to yours.  My surgeon was about 250 miles from home and my former local uro was ugly about my leaving town.  Fortunately, I was able to find another local uro.  The new uro provides all of my follow up and is a much better doctor than my old one.  Hopefully you can find another uro close by.

Carlos

Posted 4/20/2010 6:40 PM (GMT 0)
f it were me, I'd consider getting another urologist in your home town or closer, if the surgeon is so busy that you can't count of getting your appointments when scheduled. Hopefully there's more than one local uro who will take you on. Also, after you solve any continence and ed problems, then there's really no reason you couldn't go back to your GP or FP or NPF or whatever, as long as you have no special urinary needs and keep up the PSA testing regularly, at least until you need a uro again. That's my thinking on it and probably the route I will be taking at the 3 years mark, most likely. Sad that your old doc was so selfish and such a control freak to kick you out, but look around for another good uro doc. If you remain cancer free, all you would require would be regular PSA testing and possible help with long term continence and ed problems. In my case, my Family Pract. is willing and capable to help me with prescriptions for any ED pills, or even the injectable drugs for ED, as well as the PSA testing. But, if there was a good local uro guy available, I'd stick with them for a couple years, just in case.
Posted 4/20/2010 7:45 PM (GMT 0)
Yes, my husband does all his follow-ups with or through the urologist/surgeon's office. Is there a chance your surgeon would be willing to do a phone consult rather than you driving for a couple of hours? As for the PSA test, you can have that done through your regular GP if that's easier with the results sent to the surgeon. Or you can go into a lab and have the blood drawn.
Posted 4/20/2010 8:02 PM (GMT 0)
Red, there is another good reason to find a new uro. If you can find one like mine; every time I see him he fills a bag with free samples of Cialis and Viagra. Keeps me from having to spend my own money.

Sonny
Posted 4/20/2010 8:03 PM (GMT 0)
I still see my original uro/surgeon, for all I have been through. We have been together since July of 2007 when I had my very first biopsy, and been with him ever since. When possible, I feel its better to have a good relationship with any of my doctors, and the longer they work with you, the better communications can become between patient and doctor. Plus, since my original surgery got complicated, and I have had all these endless complications of strictures, etc. since., it gives me a level of comfort to still work with the guy that knows that end of my body inside and out literally.

Hard to believe there are selfish ego-centric doctors as described above. I wouldn't have anything to do with them either if I had to deal with them.

David in SC
Posted 4/20/2010 8:24 PM (GMT 0)
Red,
Yes I think I would find another urologist. Mine did my vasectomy 20 some years ago but didnt offer the robotic so I went elsewhere, but only with the idea I would return to him after my 6th months PSA. He is like an old friend now, but I am likely older than he is. But the main thing was that he was supportive of any choice that I made,as your Dr should have been.
Michael
Posted 4/20/2010 8:33 PM (GMT 0)
Unrelated story - new dentist with all the new gadgets which include the water pic thingie for cleaning your teeth...verses the scrap it off method.

There was a note in my file about doing it the old fashion way cause I didn't the like the feeling of DROWNING while getting my teeth cleaned.

Last time I was there, the Hygienist asked about why I liked the old fashion way...She then looked me straight in the eye and said: "All things considered, its my call as to which method we do."

I jumped up and took off the little bib and said: "Ya wanna bet? Me patient. You worker bee." ...as I threw the bib down and never looked back.

 

Posted 4/20/2010 8:54 PM (GMT 0)
The problem with getting another Uro is to make sure any future tests are still done at the same lab. Otherwise you will start getting different numbers, and wondering "Gee my results were better with the other guy"

By all means meet local Uro's and see if you like their approach
Posted 4/20/2010 9:21 PM (GMT 0)
I was diagnosed locally by a young URO. I left his office that day with my files, and I went 120 miles away to Cleveland Clinic. No hard feelings.

I went to my surgeon for the surgical follow up stuff, and then proceeded to go back to my URO for follow-ups. I wouldn't be too concerned about different labs. If the labs are good labsm the machines shouldn't vary by very much. The machines are calibrated to standards. Besides, you won't have any PSA right ?

I can kind of tell the local URO what I want, and so I like it.
Posted 4/20/2010 9:43 PM (GMT 0)
Having done a lot of reading recently on psa test calibration, I don't see the "don't worry about different labs" issue the same way Goodlife does. I would worry about that. Well - let me put it differently: I would not "worry" about it, but I would just make sure to use the same lab AND the same assay for each test. Unfortunately, psa tests are not well standardized, and there can be material differences when using different assays. For example, it has been suggested that the average difference between a WHO-calibrated test and a Hybritech standard test is about 22% (and, to make matters more confusing, there are non-trivial differences even among WHO-calibrated tests). I strongly suspect there are many men who have seen psa trends and been very happy or very unhappy, but the trends don't actually exist -- it is just a function of a different psa assay being used. People are making clinical decisions based on non-existent trends! When using the same assay but different labs, the difference may be not as great - bust still the standardization is not perfect. So, to the maximum extent possible, I would use the same lab and the same assay (and don't assume that just because you use the same lab, it will automatically be the same assay -- some labs use more than one assay -- one major lab uses a different assay for total psa than it does when you test total and free psa -- how many of their patients do you think notice that?).
Posted 4/20/2010 9:56 PM (GMT 0)
Wow, you are about 10 rungs up the knowledge ladder than me on PSA calibration.

I have had testing at three labs over the last year due to differet doctors, surgery 120 miles away etc. My tests have been very consistent, so I felt that probably the standardizing was workig OK.

I don't disagree as a general rule that it is good to use the same lab, but not to the point of drtiving 100 miles to do so, or paying big bucks because the insurance doesn't cover it any more.

I am hard pressed to believe that PSA tests can vary by 22 % based on method. Now if someone had a nornmal PSA and an ultrasensitive, or one with a much higer base maybe that could be, but to think that my 4.2 PSA could actually be a 3.3 or a 5.1 is a little hard to imagine at good quality labs.
Posted 4/20/2010 9:59 PM (GMT 0)
You folks are awesome and thank you so much for your input. It's really appreciated.

Currently, I have my blood drawn at a local clinic and the results are sent to my surgeon's office in Boston. The surgeon's office then emails me the results, which so far have been good. I was very disappointed when my original urologist said he could no longer be my doctor. He said it would be inappropriate for him to remain so, considering another doctor would be doing the surgery. Hey, what do I know? It's not like I've been down this road before, so I simply thought this was the way it was for everyone.

I guess I have to decide if I really need a urologist now. My hunch is that I do! Sunny brings up free samples as a bonus, and that should not be underrated. However, ED is the situation I need addressed, pronto. I've done zero, nada since surgery on Sept. 15th, so I need a urologist I believe.

I don't know if guys remember, but I'm the guy not taking or doing anything about ED, which was one important topic I wanted to discuss with my surgeon on the appointment that was postponned today for the second time. Right now I am just hanging out there, without a plan. Ooops, sorry for that visual image.......

Thanks for the great feedback.
Posted 4/20/2010 10:14 PM (GMT 0)
medved, no dispect to goodlife's test opinion, i fully agree with you. with one single exception, I have had my PSA tests done by the exact same lab since 2002. I feel its an important point when possible for someone to do so.
Posted 4/20/2010 10:31 PM (GMT 0)
Interesting topic, NONE of our Uro's here in Durango will see a patient for a year if the patient chooses to go out of town for surgery. After a year they will provide services, I always thought it was for liability reasons. That firmed up my choice to have surgery done locally with an associate surgeon brought in from Denver to work with my local Uro'.
Posted 4/20/2010 10:33 PM (GMT 0)

What a jerk!  Then again, most of them are.

Get a nearby uro for the first two years.  Fire as many as you have to until you find a good one, and fire him too if he ever forgets who's in charge.  I've fired three so far.

After two years - barring complications or problems - your GP or internist can handle the PSA tests.

Zen9

Posted 4/20/2010 11:04 PM (GMT 0)
Goodlife -- In response to your comment that it is hard to believe there could be a 22% difference between psa test results, depending on the assay, see the following:

http://www.ncbi.nlm.nih.gov/pubmed/18161661

http://www.medpagetoday.com/MeetingCoverage/ASCOGU/18853

http://www.beckmancoulter.com/products/splashpage/PSAValue/site/default.html

I could provide a dozen more articles/studies on this point, if it served any purpose. I could provide similar literature relating to free psa test standardization.

This is a really big problem. There are many very intelligent people, such as yourself, who say "maybe there is a trivial difference between labs and assays, but it can't be material." The problem is they are wrong -- it can be material. And, as my prior post suggested, it is not as simple as Hybritech versus WHO standardization (though that is the biggest issue) -- there are also differences among WHO-standardized tests (including some that perform closer to a Hybritech standardized test).

This stuff gets pretty complicated. But people ignore it at their peril, particularly as there is more focus (appropriately, in my view) on psa velocity and kinetics, rather than absolute values.

[I am just a layman -- not a doctor and not a statistician -- and really not even a very bright person -- so take my view for whatever it is worth]


Posted 4/20/2010 11:12 PM (GMT 0)
My uro (he is also the surgeon) had all my paperwork & results together, and encouraged me to talk to radiation and open surgery doctors. It certainly sounded like he wanted me cured. He is booked up forever, and my insurance pays minimal "agreed fees", so he did not have an economic reason to tie me down.
In the end I had him do the DaVinci, and he is doing all the followup on that.
As I go off to IGRT, he says that all the periodic followup related to that moves to the new doctor, but he continues following the ED/incontinence.

Post Edited (142) : 4/20/2010 5:34:05 PM (GMT-6)

Posted 4/20/2010 11:30 PM (GMT 0)

I had a very similar situation with my uro. To start with, he scheduled a biopsy before he even saw me (I was referred due to a rising PSA). He then got pissed when I went to Umich for a 2nd opinion and had my biopsy there. He let it be known that if he wasn't going to do my surgery, he would not be my doctor. Frankly, in my mind, he burned the bridge when he got upset about me desire to get a second opinion at Umich.

I then had my regular family doctor refer me to another uro with a good reputation. My first appointment is next week. Incidentally, I also heard that the uros in town will not see anyone that has seen a different uro. Fortunately, this uro would not know that and I will not bring that up.

What gall/egos some of these bozos have.

MB

Posted 4/21/2010 12:44 AM (GMT 0)
RED NIGHTHAWK ( sounds like a DC comic superhero !)

you have got a lot of very good support and information - and it seems the bottom line is - if you ain't happy - choose someone else to be your uro...
-as with any interpretation ( for ego or liability reasons) what is best for you is the key thing - the best surgery for you - the best support for you -

-I just remembered the two sites in which patients can rate their doctors - I was pleased to see my posting on the Canadian doc site for my Dr. David Tilley ( the second one listed, in Toronto, Ontario)

Canadian Doctors
www.ratemymd.ca/

I checked out on the USA and Canadian doc site about my urologist .. while Tilley gets 4.0 rating out of 5 .. my urologist gets only 2.9 ... he may be good at being a surgeon , but his bedside manner and lack of support ( lack of concern) has me wondering how long I want to deal with him ... will be dealing with ED issues with my family doctor...

USA and Canadian Doctors
www.ratemds.com/

- I also liked the worker bee analogy from Steve n Dallas posting ...

-all the best -

hugs
BRONSON
Posted 4/21/2010 12:44 AM (GMT 0)
Medved,

Don't want to hijack this thread, but your e-mail wasn't in your profile. Thank you for bringing this to my attention.

I think fortunately for me, most of the big labs around here use ECL (electrochemiluminescence ) machines, which as far as I can tell are calibrated in much the same manner. That is probably why my results have been very consistent.

The nih study you mentioned was an Italian study, which may have some more standardization issues as well coming from Italy.

It is certainly something to consider, but in Redhawks case, I still think that after his first PSA, the rest will be at the local lab, and therefore things like doublimg times etc, can be seen.

Thanks again for your deep knowledge of this subject.
Posted 4/21/2010 12:55 AM (GMT 0)

medved said...
Having done a lot of reading recently on psa test calibration, I don't see the "don't worry about different labs" issue the same way Goodlife does. I would worry about that. Well - let me put it differently: I would not "worry" about it, but I would just make sure to use the same lab AND the same assay for each test. Unfortunately, psa tests are not well standardized, and there can be material differences when using different assays. For example, it has been suggested that the average difference between a WHO-calibrated test and a Hybritech standard test is about 22% (and, to make matters more confusing, there are non-trivial differences even among WHO-calibrated tests). I strongly suspect there are many men who have seen psa trends and been very happy or very unhappy, but the trends don't actually exist -- it is just a function of a different psa assay being used. People are making clinical decisions based on non-existent trends! When using the same assay but different labs, the difference may be not as great - bust still the standardization is not perfect. So, to the maximum extent possible, I would use the same lab and the same assay (and don't assume that just because you use the same lab, it will automatically be the same assay -- some labs use more than one assay -- one major lab uses a different assay for total psa than it does when you test total and free psa -- how many of their patients do you think notice that?).

Because there are differences test to test and lab to lab and day to day we should all learn to ignore small psa variations.  My urologist will not consider even acknowledging small psa changes post surgery.  He tells me there is no such thing as "zero" (goodbye zero club) only an undectectable range.  We of course should look for trends, but be aware that small fluctuations are  normal and to be expected.

Posted 4/21/2010 2:07 AM (GMT 0)
Hey Bronson,
Thanks for the reply. Just a quick background to my little situation about why I left my uro. I like the guy, after all he was my urologist for three years. He found my PCa and treated me with the upmost care and respect, and even humor during the biopsy phase. I liked the doctor. However, this board and another health board taught me that it was vital to find the best surgeon (if that was the route to take), and not just stick blindly with my urologist. Once I decided upon daVinci robotics, my wife asked the uro how many he had done. He had 17 years experience doing open radical prostectomies, but admitted to having done only 40 daVincis. I knew then I had to find a much more experienced surgeon, and I fortunately did. So leaving my uro was difficult because I felt comfortable and happy with him. The surgeon is also a very humble and likable man, not pompous or arrogant in any way, but it's just an inconvenience to drive so far for just a checkup. That's my dilemma. Btw, I'm certainly no superhero, far from it. I ride a 1995 Honda RED KNIGHTHAWK motorcycle, hence the screen name. Thank you to all who participated in this thread. john
Posted 4/21/2010 3:11 AM (GMT 0)
Mine was a somewhat similar situation. GP who was monitoring my PSA thought it prudent I see a urologist. The urologist said my choice, given the lowish PSA and unremarkable DRE, whether to have a biopsy or wait 12 months. I chose the biopsy. On diagnosis (by him) I started looking at robotic which he incidentally didn't do. I took the trouble to write him and inform him I was having the robotic by a different urologist in another city. That ignorant POS had the temerity to take offence and advise me that he would not see me again for two years. You've got Buckleys sport. I now leave a pathology request form from a lab of my choice with my GP, who signs it, I pick it up, get tested and he informs me of the result. After the first year I no longer worry about seeing the urologist. There is no reason to do so. I, with my GP, closely monitor my PSA (ultrasensitively) each 4 months and as a matter of courtesy I have each result forwarded to the operating urologist for his records.
Bill
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