Arghhhh...cystoscopy NOT

13 years 1 month ago #36324 by sara.anne
Replied by sara.anne on topic Arghhhh...cystoscopy NOT
Well, my analysis appears to be correct. Just had a call from Dr. J (still returning calls at 7 p.m.) and he said that because CIS can rarely grow in the upper urinary tract, and since my last CT-urogram was three years ago, he wants to do it again. Assuming all is well, we wouldn't do it again for five years.

HATE looking forward to this...the CT part is no big deal, but they have a $#%&^*() of a time getting an iv in me. Last time they started with a phlebotomist....by the time she gave up, she, I, and the lady in the cubicle next to me were all in tears. They called for an iv nurse (didn't know they had such things) and she slipped it in slick as a whistle!!! They told me to ALWAYS request an iv nurse!!


Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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13 years 1 month ago #36308 by sara.anne
Replied by sara.anne on topic Arghhhh...cystoscopy NOT
Yes, Cynthia...I will talk to him about it. I was so caught up in postponing the cystoscopy and the thought of an UTI, that it was only after I was in the car driving home that all these other thoughts organized themselves in my brain!! Dr. J. is very good about talking about stuff....which is another reason I didn't get to that question while I was with him yesterday....we were talking about other stuff....

I do think the CT-urogram is because of the other sites where CIS is possible.......

SA

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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13 years 1 month ago #36304 by Cynthia
Replied by Cynthia on topic Arghhhh...cystoscopy NOT
Sara Anne I am so sorry that this happened I know how much it takes out of you to get ready for a check up. Then to have it called off........

As for the CT why don't you ask your doctor? I got to the point that I felt I was having too much radiation and had a long talk with my doctors about it. The agreement is that we don't unless there is a very good reason anymore. Now when they mention it I say "why?" and we talk it though.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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13 years 1 month ago #36300 by Joey
Replied by Joey on topic Arghhhh...cystoscopy NOT
Sara Anne, at my 2 year cysto even though it was clear, my URO wanted me to get a pelvic MRI and I had the same thoughts, why? He said he can only see what was going on inside the bladder and even though he did not expect to find anything he wanted to be sure. It showed I was clear outside the bladder also. Your results will come back clean

Joey

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13 years 1 month ago #36299 by GKLINE
Replied by GKLINE on topic Arghhhh...cystoscopy NOT
Sara Anne

This "not knowing" is harder than the actual news form the Dr.

I ALWAYS have an anxious time waiting for news.

My heart goes with you.

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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13 years 1 month ago #36295 by Alan
Replied by Alan on topic Arghhhh...cystoscopy NOT
Sara Anne,

That is kind what I figured. A timeline check. I don't see how 1 in 3 years can hurt but, I am like you, I am not a fan of something that puts out extra radiation. I am also into less invasive procedures unless there is a good reason for doing them. My tumor while high grade was small and caught early so my URO is backing off a little other than cytos and cytology. And, we are even stretching that a few months longer as cytos can have negative problems.

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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