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Questions about Surgery Tomorrow

2 years 11 months ago - 2 years 11 months ago #50321 by bypeep
Well, this mid-morning he finally called her back 21 days after the TURB. He told her the pathology says it's a transitional cell carcinoma Ta. He will not be scheduling another TURB later on, he will just do cystoscopy every three months. He isn't even scheduling a follow up appointment to see her in person.

I really hope this is enough. There is a man a few towns away that just appeared on my Facebook feed for a gofundme page that said he had a low-grade, non-invasive, superficial bladder cancer and that suddenly after a few years of careful monitoring progressed to Stage IV seemingly overnight. This worries me terribly. Especially because of her large tumor size and the precarious location near her ureter outlet that he wasn't able to go "deep" around.

I guess there is nothing left to do at this point.

Thank you for all your help. I will still be reading the forums to learn as much as possible.

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2 years 11 months ago #50288 by sara.anne
So sorry to hear that your mom still hasn't got a definitive diagnosis. The holidays do interfere with "normal" time frames.

If your mom and you do not feel comfortable with her current doctor for any reason, now would be the time to change. He will be becoming her "best friend: with frequent visits during the next few years and it is important to be with someone in whom she has confidence and trust.

Sara Anne

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

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2 years 11 months ago - 2 years 11 months ago #50287 by bypeep
I didn't want you to think I'd come here for advice and then just left, but we still haven't heard a word from Mom's Urologist regardig her TURB results. Her cathether moved towards the end of the first week and after paging the doctor four times to find out what to do he still hadn't responded. She couldn't have a bowel movement because of the pressure and urine was leaking from around the Foley. She decided to go to the ER and have it removed. The next morning a nurse from the Urologist's office called to schedule her to have the catheter removed. Ugh. I really, really hope this isn't an indication of things to come. Anyways, we are still waiting... it seems like a very long time to wait around for a pathology report since the TURB was on 12/15. I know that there was a holiday in there, but still, we're not talking about an ingrown hair, it's cancer! I'll post again when we hear what's what.

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2 years 11 months ago #50149 by sara.anne
I am sorry that your urologist has such a lousy "bedside manner." Of course you are concerned, and he should acknowledge that. She might want to look around for a new urologist, since she and he/she will have a long and "intimate" relationship!

As for the tumor number and grade....a quick pathology during surgery gives a hint, but is not of the quality of the type of pathological analysis that is done when the samples are sent to a path lab for a complete analysis. Also, a CT scan gives an idea, but again is not definitive. In fact, it is rather common to have a repeat TURB done when the results are not clear. So you really will not know the grade/extent of the cancer until the path report comes back, and yes, it can take about a week.

Bladder cancer usually arises from the bladder lining, so the comment that it was in the lining (maybe a bit deep) should not be overly alarming. It is when it goes into the muscle below the lining that problems arise. Again, the path report should indicate this.

Like most cancers, bladder cancer grows slowly over years before it becomes noticeable. That is why a couple of weeks delay on getting a TURB scheduled or finding a second opinion is not a big deal. Your mom's cancer has been there for years, even if it couldn't be seen or caused symptoms.

BCG (Bacillus Calmette-Guerin, if you want to know its "real" name) is the treatment of choice for either high grade but superficial bladder cancer, or for low grade that keeps returning. It is a modified tuberculosis bacteriuim which is used as a bladder wash to stimulate the immune system to reject the cancer cells. There is a lot on this Forum about BCG treatments....I had them and have been cancer-free for 8 years now. However, I wouldn't worry about learning all about that unless your mom's doctor recommends it. It is early days yet.

Two inches is a pretty good size tumor, but it is not the size, but the grade and extent that it might have gone into the muscle that is the real issue. And, yes, it does take a week to find this out.

It does sound as if the urologist is doing exactly what he should do.

Will be thinking of you.

Sara Anne

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

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2 years 11 months ago #50148 by bypeep
So she had her TURB yesterday and I think it went well. I really don't for the Urologist but maybe I'm just being overly sensitive. I'm not sure.

Originally she was told that there were two tumors seen on cystoscopy and the CT scan seemed to confirm that, showing two "tumors." When I spoke with the doctor yesterday he said that one of the spots had to be a fold in the bladder because he was only able to find one main tumor. I think that's strange, but he doesn't like anyone asking questions. Her original doctor said she saw two "spots" and the CT scan showed two "spots" but I guess it's just one now.

Anyways, he said the tumor was twice as large as he expected, about two inches in diameter. He said because of the size he had to go very deep into the lining of the bladder and she was catheterized as a result (one week with a bag). I'm unclear as to the protocol with lining involvement, but when we asked him if that was worse than just superficial, he didn't give a real answer. He gave me that look again. He then said there was this thing called BCG, but that was optional and it was just "bacteria that you flush the bladder with." Has anyone with a large (or I assume large) and lining involvement needed BCG?

He said there were several satellite areas of what he believes are cancer surrounding the main tumor which he cauterized.

The tumor was very close to the left ureter and I got the impression that he wasn't able to get as much of a margin there because of its proximity. I'm not sure what this will mean later on down the road.

A confusing aspect of the discussion was on grading. When her gyno found the cancer originally they biopsied it and it came back as low grade. Yesterday however, the urologist told us that the tumor was being sent to pathology to determine its grade. He said treatment would depend on whether it was low-grade or high-grade. When I asked him about the initial biopsy that showed low-grade, he either didn't remember that or he kind of made us feel like this could change now that the body of the tumor was available to view under a microscope.

He said she'd likely had this cancer for many years for it to have grown to this size.

I guess my concern at this point is if biopsies often differ in results from larger samples. How likely is it that the biospy said low-grade and this pathology will come back as high-grade?

He said he didn't see involvement of the muscle but that bladder cancer was a microscopic disease and only the pathologist could tell for sure. One week to get results seems like an eternity. :(

My mother's concern is that if this has been growing for years, how likely is it that cells have spread throughout her body? When I asked the urologist about this he gave me this quizzical look like I was the dumbest person ever and said "This is a very, very common disease. I see it every day. Think of it like a skin cancer. You just check it and remove new spots as they appear." I didn't think this fully addressed my mother's concern about the possibility that this disease could spread or already have spread at a microscopic level. So he didn't actually answer my question. Are there any statistics about bladder cancer and metastasis?

What about tumor size? Is this a large tumor or is finding it at 2" common?

I know I'm throwing a ton of questions out but she is so very worried and we are too and it's so hard to wrap our heads around the word cancer without fearing the worst. I think if it hadn't been for her father dying after being told he needed no further treatment other than excision, it wouldn't be weighing on our minds, but how is it possible that these cells just hang out at their original site indefinitely?

Sorry for the length, I'm just so emotional and exhausted.

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2 years 11 months ago #50125 by sara.anne
The urologist apparently thinks that these are low grade and if they are, then removing them is the only treatment indicated NOW. The path report from tomorrow's procedure will confirm if this is so. As I mentioned, the only treatment then would be exams every three months (usually for a period of two years. Then every six months until 5 years have passed, and then annually forever.) There is a "nasty little secret" about low grade bladder cancer...it does have a habit of returning. That is why the exams are so important.

The urologist is doing the right thing by going back in and making sure all the tumors are removed.

Sara Anne

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

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