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12 years 6 months ago #15442 by Julie
I would speculate that the tumor your Dr. saw was the papillary type and is the most common form of bladder cancer. She cannot tell stage or grade with out doing the TURBT which is what your are having and they are most commonly done as an outpatient procedure. She was trying to inform you of the possible consequences of the surgery because for informed consent they have to give you the positive and negatives things that might happen during a procedure. You will want someone to come with you as you probably should not drive yourself home after the procedure.

We find it is important for both of us to be at all our Dr. appointments as we each hear different things and may even interpret what was said differently. Also when a Dr. brings up the word cancer we have a hard time remembering anything said after that point.

Most often during a TURBT they will do a retrograde pyelogram which is a radiological method of viewing the upper tract (ureters and kidneys) because they are checking for any sign of cancer there. You are right to have the procedure done soon. Julie

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12 years 6 months ago #15441 by tate
hi pat,
yes, I am having out patient "Transurethral resection of the Bladder in a hospital" The retrograde stuff was what I remembered the doc writing on the paper used to schedule the procedure. She said since she did not know how big the cancer was and when she takes it out- if it has gone through all the walls/layers and if the bladder was not closed or if she had to put a stent in she would not be able to use the mitromycin and I would have to come in for weekly injections. I am in WS, NC. I trust/like my doc and she has alot of experience from what I understand. i just wonder if others have been told they have cancer without biopsy...I guess Docs learn exactly what cancer looks like. I know everyone deals w/ stuff differently but I am just trying to stay positive and deal with what I was told instead of backing up to the state of mind that maybe I don't have cancer then have to accept it all over again if I do. If I don't have it then hallaluah and I will celebrate.
I probably will get a second opinion after the surgery and pathology report comes in...but I did not want to put off the surgery.

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12 years 6 months ago #15438 by Patricia
Hi Tate...well i'm a little confused on what a retrograde B/Cysto is. Are you scheduled for a Transurethral resection of the Bladder in a hospital? If not...get another opinion from a uro/surgeon preferably from a leading cancer facility or University facility that deals with lots of bladder cancer. There is no way to grade what she is seeing in your bladder without cutting it out and taking part of the muscle to determine staging and grade. I have no idea what she means about putting a hole in the bladder?........where are you located? Pat

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12 years 6 months ago #15436 by tate
Hello, and I am glad I found this website...I am hoping someone can help me with some questions/concerns. I am a 42yr old female.hx of endometriosis lots of laps, ooph (removed one ovary @ 1997)and then total hysterectomy in 2000. over the past year had some similar pain and blood clots in urine off and on. I thought they were just clots from the endo. Then a couple of months ago started w/ blood clots in urine every other week...went to gyn, Pap was normal but he said he felt something on my bladder...he thought it may be the endo but sent me to a Urologist. Had CT/with contrast and dye, X-rays, urine pathology...on Friday, then on monday had Cysto in MD office. She told me I had BC but she did not know size, if it went through walls, or in urether since it was very close..scheduled for retrograde B/cysto w/ instillation of mitromycin on Thursday. She talked about what she would have to do if the cancer went through the walls of the bladder or if she had to put a hole in bladder/stent and I would have to go in for weekly injections...I asked if I would need radiation or chemo and she said that she needed to see how big it was 1st before we really got into that. I feel ok about everything and that it will be fine...but what I am having a hard time with is how did she know I have cancer since she has not done a biopsy yet. I called wednesday and got the results of the test (all normal, except alkoline a little high) from the week before (her notes from Monday's visit and the cysto had not been dictated yet and they will send me a copy when they are finished) I have the best family and friends but feel bad that I told them I have cancer...I called Thursday and left a message asking how does the MD know it is cancer with out the biopsy... and all the Nurse would say is the MD told me to tell you that I have a mass that appears to be cancer. I know this must sound silly but I have some friends that must be in denial because they are making me feel that I didn't listen to the MD...but I did and she never said that she "thought it was cancer" or "there is something suspicious" She said "you have bladder cancer" and some possible ways to treat it. The only thing she was not sure about was the size. I told her the hardest part was telling my parents I have cancer and she said she didn't think I needed to bring my parents to the surgery but maybe I should when I come for the follow up
I will have someone with me from here on out when I talk to the MD...but I just want to know if anyone has ever felt confused or been told they have cancer without a biopsy. I would have never used the "C" word if that was not what she said and it hurts my feelings that some people say that I did not listen.

I am trying to stay positive about the outcome and Lord knows I will be a happy camper if it is not cancer... I just want to know if others have ever been told they have cancer w/out the biopsy. Thank you all for sharing your stories- they help with staying strong...Good luck and God bless to you all!!

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