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cystoscopy pain

6 years 11 months ago #40502 by warrentug
Hello all, thanks for the info and advice! I have a lot of time before my re-TURBT, I have to go fishing for a few weeks after the first of the year...bills don't stop. I have started looking into where other than Bend I should be thinking of having work done, even if that is only second opinions. M.C. Anderson is number one but kind of far, that leaves Portland, Seattle or California. I was interested what people think of U of W Seattle? It is closer,(6 hours), than the Bay area,(9 hours) and L.A.(14 hours) away.

I will talk to my doctor about where other than here in Bend I should be talking to. The other thing is to get a second Pathology report/opinion after my next TURBT.
Thanks, Warren.

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6 years 11 months ago #40501 by GKLINE
Warren

I know a second TURB is now on the horizon. They are going to look for clear margins(no cancer cells) in the bladder wall. If they find cancer cells, then they are going to proceed with Bladder removal (RC). I remember being so sure the second TURB would be clear... and then finding out I was going to have a Radical Cystectomy in 5 days.
At this time I had a long consult with my Dr. and HE had already started to call in other Dr. for second opinions. He sent my slides to MD Anderson for analysis. (I know her did because my insurance co paid for 3 opinions!) My Dr. even asked if I would like to GO to MD Anderson for the operation. So a Good Dr. will not discourage a second, or third opinion.
I didn't go to Texas though. My Dr. was trained by MD and had done HUNDREDS of RC's. I qualified for a neo bladder with nerve sparing surgery and I consider myself a success story.

You will be too.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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7 years 14 hours ago #40494 by sara.anne
Warren, I hope that we are all getting way ahead of ourselves here, and that you will not need our advice, but....

My uro told me that he not only welcomed second opinions, but if it ever came to a recommendation for RC he would REQUIRE me to get one. He trained at OHSU here in Portland and I suspect that this is where I would go for a second opinion.

And I would definitely NOT have an RC in Bend.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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7 years 14 hours ago - 7 years 14 hours ago #40493 by Alan
warrentug wrote:

Mike, I'm in Bend Oregon. I've been seeing the doctors over at Bend Urology clinic, I don't know how they rank on this kind of stuff, they are big and are always busy...I know that is a better sign for a truck stop :laugh: Any how I am scheduled for another TURBT next month on the 31st. The doctor said he wants to go deeper and take out more area because they didn't get a pathology report on the muscle.....since I first posted today I have been reading more on the internet and it sounds like this is a bigger deal than "non-invasive", bummer. But worst case if after next month and BCG treatment I end up going down the route you took, not that I am looking forword to that, but if I have to, I have to. One visit to the doctor at a time, I don't want to look to far ahead. Thanks, Warren


Warren,

You DX is very similar. A "mushroom/papillary" tumor. Mine was tiny- 0.5 CM- about the size of an eraser at the end of a pencil. Mike is correct that perhaps a second opinion is in order assuming you are able to travel and your insurance allows. The only reason why I did not go straight to MC Anderson in Houston is two fold. I didn't know about this forum until slightly after the second TURB (almost a standard protocol when it's high grade like mine and yours) and my URO does almost all bladder cancer in his group. He does several (30-40) cystectomies a year. That being said if I have to go that route I am still headed to MD Anderson. I also would have gone there for the second TURB knowing what I know now. This is even rating my local guy as a 10/10-heck he personaly read my CT scan and saw the tumor where radiology missed it and he personally read the path report-he went many extra miles on my case. Everything still has worked on in my case so, the real question is: how well versed and how many BC cases are they handling a week or year? And, this group in Bend may be a very good group and just do everything there. Patricia may want to chime in here as she has agreat library of doctors and facilities. Either way knowledge is power and you are way ahead of where I was on this at a comparable point in time. You will certainly conquer this!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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7 years 15 hours ago #40492 by mmc
Great attitude Warren! No matter what, you will be fine.
I'm not sure of the top docs by you. I remember you mentioning Bend now.

Fine to get returbt there but you may even want to ask your uro for a referral. Ask him who you should see if you had to get an RC.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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7 years 15 hours ago #40490 by warrentug
Mike, I'm in Bend Oregon. I've been seeing the doctors over at Bend Urology clinic, I don't know how they rank on this kind of stuff, they are big and are always busy...I know that is a better sign for a truck stop :laugh: Any how I am scheduled for another TURBT next month on the 31st. The doctor said he wants to go deeper and take out more area because they didn't get a pathology report on the muscle.....since I first posted today I have been reading more on the internet and it sounds like this is a bigger deal than "non-invasive", bummer. But worst case if after next month and BCG treatment I end up going down the route you took, not that I am looking forword to that, but if I have to, I have to. One visit to the doctor at a time, I don't want to look to far ahead. Thanks, Warren

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