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A question about symptoms

10 years 9 months ago #14458 by Patricia
You are so right about the areas of expertise at various cancer centers.....bladder cancer especially for women very specific and there are many places that are not cancer centers that have a wonderful reputation for treating this like USC/Norris and Indiana Univ Med Center and many others. I always think a second opinion is a good idea with a diagnosis of cancer......having said that please know that i'm not being critical of your choice...just cautious.
Pat

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10 years 9 months ago #14454 by sara.anne
Pat, I have a great deal of confidence in my uro...he trained at OHSU where the cancer center is located. He is doing everything that should be done. I suspect that today I do have a UTI....had a real one after the first TURB. If I feel this way tomorrow I will call and take in a specimen. I have never had any bleeding.

And Rosemary, thank you for the kind thoughts. This group means a lot to me; I don't know how people got through situations like this before there were forums where they could get information and, yes, vent.

And, BTW, I worked at the National Institutes of Health and have a somewhat sceptical view of some "cancer centers." Some are excellent in some areas (not all in all areas) but there are political and geographical factors involved in their organization as well as scientific and clinical.

Sara Anne in Lake Oswego, OR

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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10 years 9 months ago #14452 by Patricia
I don't know sara anne....maybe its a very individual thing. I had CIS and it was invasive and i never had one single pain...just the initial gross hematura and 2 TURBS none of which left me with any symptoms afterwards. Are you happy with your Uro...does he specialize in blc? You might want to consider a second opinion at this option? I don't believe BCG should be given if there is bleeding.
I think the only recognised cancer center is in Portland.
http://cancercenters.cancer.gov/cancer_centers/ohsu.html
Pat

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10 years 9 months ago #14451 by Rosemary
Sara Anne,

I'm so sorry to hear of your terrible discomfort. I don't have CIS so I can't say whether it's normal to have these symptoms for so long. There are others here who may be able to help you with that issue.

However, having endured 12 BCG treatments, I CAN tell you to expect burning and bleeding on account of BCG alone, so, on top of the continuing burning and bleeding after TURB's, I would say that it's not gonna be too much fun. I think you should probably give it a TRY, though, IF that is what your Doctor is asking you to do.

We have a friend here at the forum, Warren, who was Dx'd about 7 years ago with CIS and was treated with Mitomycin. He has not had any recurrances. (Hope I'm telling this right, Warren)...

I guess my point is, that if BCG is intolerable to you, there MAY be another option.
However, my understanding is that BCG is the treatment of choice for CIS.

Take care. There are lots here who will be able to help you through this ordeal.

Your friend,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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10 years 9 months ago #14450 by Imndnile
FINNALY THE BURNING HAS STOPPED!!! ;D

I to have had those symptoms since this whole ordeal started for me in Aug/Sept 2007 I was treated for UTI up until Dec when when I had Cystoscopy and Biopsie done and then was DX: CIS. The burning pain and the frequency lasted all the way through the 6 BCG instillments. It has been 3 weeks since my last BCG and the Burning has finally stopped. I am still getting up 3 or 4 times a night. This is the best I have felt in 6 months.

Imndnile no more.
DX: TIS (CIS): Carcinoma in situ (non-invasive flat high-grade (G3) cancer)
12/13/07

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10 years 9 months ago #14448 by sara.anne
As I have written before, I am waiting until April 2 when I have my first BCG. I was referred to a urologist in the first place because I had all sorts of "UTI" symtoms which, obviously, weren't. When the diagnosis of CIS was made, my uro mentioned that this explained all the symtoms...frequency and BURNING. I have had two TURB/biopsies, the last three weeks ago, and STILL have all the original symptoms. I am assuming that this is because the cancer is still there? Mentioned this to the uro last week and he asked lots of questions about the symptoms and did say that the BCG would make it worse. My question to you, dear friends, is HOW LONG WILL THIS LAST? I am taking DetrolLA and Urelle and am living with it, but a. it is UNCOMFORTABLE and b. it is something screaming CANCER at me 24/7.

Sara Anne in Lake Oswego , OR

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