Questions about Surgery Tomorrow

5 years 4 months ago #50121 by bypeep
Questions about Surgery Tomorrow was created by bypeep
Hello,

My mother was recently diagnosed with bladder cancer. She is 60 and it was discovered accidentally during a routine hysterectomy and bladder sling surgery she had to treat prolapses. When they used to the cystoscope to check for knicks in the bladder they saw two spots that they biopsied. The biopsy results came back before she left the hospital and they told her it was low-grade. When she thought back on it, she had a few episodes about a year ago where she'd passed gross blood and clots while peeing and had seen her doctor and they told her to wait to see if it went away and it did so they didn't pursue it further. This is infuriating to me because I worry that this has been growing inside her for over a year now and they knew back then that she wasn't bleeding due to an infection. Anyways, what's done is done...

She was sent to a urologist and he ordered a CT scan of her pelvis. He told her he was able to see the two tumors on the CT scan. She is scheduled for some sort of procedure tomorrow which she described as a "D&C" of the bladder.

What I'm here for, other than support and information, is what I need to be asking for questions since she is under the impression that once she has this "scraping" done, all is well.

What questions should I have at the ready? How do they know if it's spread to the lymph nodes without taking a node for biopsy? Why didn't they do a PET scan? (The reason I ask this is because my grandmother had a non-invasive, stage 1 breast cancer, and she is scanned head to toe every year).

What else do I need to know going into this? I'm very concerned for her and want to be informed.

Thanks everyone!

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5 years 4 months ago #50122 by sara.anne
Replied by sara.anne on topic Questions about Surgery Tomorrow
So sorry to hear about your mother's experience. I wish doctors wouldn't treat urinary blood episodes so casually. My dad had blood in his urine ONCE. Went to the doc. Fortunately this doc was on his toes...Dad had kidney cancer. One kidney was removed, and he lived a long and happy life.

What your mother is no doubt having is called a TURB (transurethral biopsy of the bladder.) While your mom is under general anesthesia, he will remove all visible tumors and some surrounding tissue. These samples will be sent to a pathologist for analysis. Only when the path report comes back (and your mom should request a copy) will anyone know for sure what she is facing. The path report will tell what the grade is (low grade...very slow growing or high grade....rapidly dividing), what type of tumor it is and the cell type, and whether it has remained localized or has started to grow into the surrounding tissues. Normally a patient goes home the same day as the TURB....occasionally they do remain overnight. It often takes a week or so for the path report to come back. The urologist may have a good idea of what the results will be, but cannot be sure until that important report is in hand.

The results of the TURB will help determine what treatment, if any, is needed. If the tumors are localized and low grade, it may be just a visit to the urologist every three months for a while. If they are high grade, or starting to spread, the treatment will be different and you can explore those options later if that is the case.

Wishing your mom....and you...the best of luck. She is lucky to have you by her side.

Sara Anne

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

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5 years 4 months ago #50124 by bypeep
Replied by bypeep on topic Questions about Surgery Tomorrow
Sara Anne,

Thank you. My mother's father actually died of kidney cancer several years ago. They said they'd found his early and it was completely encapsulated and he needed no further treatment other than a nephrectomy. But within a year or so it spread and he eventually died from it.

They did a biopsy on Mom's bladder the day the gyno found the "spots" and it came back as low grade.

My mother seems to think that this means "scraping" the lining of her bladder is all that is necessary.

I'm not sure how detailed CT scans are but all her Urologist said about the results were that he could see the two spots on the scan. He didn't say whether they were shown as penetrating the bladder wall or how large or anything else. Is this lack of information normal?

What should I be prepared for tomorrow? Are there specific questions I should be asking to make sure we have as much information as possible? I'm assuming we won't know anything about the pathology until after which is so frustrating. :(

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5 years 4 months ago #50125 by sara.anne
Replied by sara.anne on topic Questions about Surgery Tomorrow
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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5 years 4 months ago #50148 by bypeep
Replied by bypeep on topic Questions about Surgery Tomorrow
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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5 years 4 months ago #50149 by sara.anne
Replied by sara.anne on topic Questions about Surgery Tomorrow
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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