Carcinoma In Situ diagnosis

8 months 1 week ago #61940 by Clyde
Replied by Clyde on topic Carcinoma In Situ diagnosis
Journey update: I had a cystoscopy and a cytology test on 8/4/23 and both were negative! I'm appx 2 1/2 years negative now.
So far I have had a total of 27 BCG instillations, all at full strength. I will now be scheduled for 3 more BCG maintenance instillations in December which should complete the SWOG protocol. Thankfully the Uro/Onc did not mention any surveillance biopsies  this time!

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1 year 2 months ago - 1 year 2 months ago #61606 by joea73
Replied by joea73 on topic Carcinoma In Situ diagnosis
Hi Clyde,

Regarding item 2

I have not heard  the term Surveillance biopsy either, but sometimes similar biopsy is done to get specimen from different locations of bladder wall  even it tumors are not visible.  It is because the whole bladder wall had been expose to the same urine with carcinogens which might be a cause of cancer.  

 I think your urologist is extra careful not to miss it before he transitions you to be on longer surveillance period.  Especially BCG is more effective on CIS and papillary tumor.  So, if  you have done 24 BCGs and no papillary tumors are found, it is likely no CIS exists.  But I think  it is good that your urologist is doing surveillance biopsy for CIS so we can say from " it is likely no CIS" to it is very highly likely no CIS". 

Incidentally,  some CIS are hard to detect by ordinary cystoscopy with white light because CIS is flat.  I  am guessing that some institutions use blue light cystoscopy instead. But the last time I have checked  there are only about 160 locations in the US where bluelight cystoscopy have been installed. 

  www.cysview.com/about/where-its-available/

So, not all hospitals have it.  Surveillance biopsy may be an alternative way if a hospital does not have bluelight cystoscopy.    In the past, bluelight cystoscopy was available in rigid type and used only OR during TURBT.  But Karl Storz who has a patent for bluelight cystoscopy has come up with flexible blue light cystoscopy so it can be used in non OR environment.   I think blue light cystoscopies are available in urban area and more in academic hospitals because the cost which can be reimbursed but rather extra time and resource are required to do bluelight cystoscopy.  First special chemical is instilled into bladder, then hold it for about hour, and avoided.  I have heard it takes about 3 hours of hospital stay whereas regular cystoscopy takes less than 10 minutes.   In addition, the hospital must invest in a blue light cystoscopy equipment and special liquid costs about $1,000 per instillation though it is covered.  

Picture on the left is cystoscopy by white light, and on the right is bluelight cystoscopy.  Red spots are cancers.

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1 year 2 months ago - 1 year 2 months ago #61605 by Alan
Replied by Alan on topic Carcinoma In Situ diagnosis
Pretty normal on yearly checks after finishing whatever regimen of BCG each patient has done. I am out 15 years out from my DX. At 12 years, my URO suggested we might just do cytology alone. It sounds like you are confusing the cystoscopy as a biopsy, which usually is done only if something suspicious is seen. "Blisters" could be a concern, so I would probably get that done. I actually told him I was fine on passing after 12 as that it was my decision and he never saw anything warranting any further investigation. There was a lot of thought into this. First, my cancer, although high grade, was caught very early and likely the TURB destroyed all of it. The BCG application I am sure helped. Secondly, I experienced a couple of nasty UTI's after the yearly scopes. So that is a risk. Third, scarring or other problems of the urethra do sometimes happen with scopes. I still do yearly visits and listen closely to my body/system and my basic annual physical is 6 months apart with another cytology done. Who knows, I might even have him do scope again depending on how I feel.

We have read about a few that experienced recurrences after 5 years free and I even recall one after 10, so it does happen. For sure, I would go at least 10 years on scopes for peace of mind.

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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1 year 2 months ago - 1 year 2 months ago #61604 by Clyde
Replied by Clyde on topic Carcinoma In Situ diagnosis
Good news today, My Cystoscopy was negative. This puts me at 2 years of negative cystoscopies. I still need to wait a week or so for cytology results. I have completed 24 BCG instillations now and will be
scheduled for numbers 25, 26 & 27 in June.

I do have two questions.

1. When doing the cystoscopy today the Dr. pointed out a few small
"blisters" that looked like clear bubbles. He said that was from the
BCG (last installation 12/14/22) and he said they should go away on their own.
Has anyone else had these?

2. He said we would do one more maintenance BCG and surveillance
cystoscopy in 6 months. If everything looked good he would then do a surveillance
Biopsy of random areas of the bladder to make sure no CIS was missed in
cystoscopies and cytology tests. If that is clear then I believe we will go to
one year surveillance cystoscopies. This is the first I ever heard of a "Surveillance"
biopsy. Has anyone else had to go through this? I'm sure he is being ultra safe
but I'm not sure if it is necessary.

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1 year 7 months ago #61435 by joea73
Replied by joea73 on topic Carcinoma In Situ diagnosis
"Negative for high grade urothelial carcinoma"  is the term used in The Paris System (TPS) for Reporting Urinary Cytology was proposed in the 2013 International Cytology Congress in Paris, France.   The finalized recommendations of TPS were officially released in 2016.   Since then it seems it has become the standard for cytology reporting.   TPS is intended to eliminate great variability by which urinary tract cytology specimens are assessed between individuals and institutions.   Of particular concern was the inconsistent and high rate of indeterminate diagnoses, such as "atypical".  Diagnostic categories for TPS are as follows.

1.  Negative for High Grade Urothelial Carcinoma
2.  Atypical urothelial cells
3.  Suspicious for High Grade Urothelial Carcinoma
4.  High Grade Urothelial Carcinoma
5.  Low Grade Urothelial Neoplasm
6  Other malignancies, both primary and secondary

Prior to TPS,  1. Negative for High Grade Urothelial Carcinoma  was  Negative for malignant cells, and 5. Low Grade Urothelial Neoplasm was Low Grade Urothelial Carcinoma.

In TPS,  criteria for atypical urothelial cells are cells where cytologic changes fall short of  a diagnosis of  33.  Suspicious for High Grade Urothelial Carcinoma or 4.  High Grade Urothelial Carcinoma, and meet the following requirement.

Major criterion (required)   -  Non-superficial and (non-degenerated) urothelial cells with an high N/C (Nucleus / Cytoplasm) ratio > 0.5
Minor criteria (1 required)
  -  Nuclear hyperchromasia
  -  irregular nuclear membranes
 -   Irregular, coarse, clumped chromatin

In Moffitt Caner Center, FL,  cases if Atypical has been reduced from 27% cases in 2015  prior TPS to 10% in 2016 after TPS.

In terms of the diagnosis of "Negative for high grade urothelial carcinoma", according to Dr. Adeniran, MD, Director of cytopathology  of Yale school of Medicine,  risk of malignancy is 0-10%.  So, this is a very good news.

Squamous cell present  is likely contamination from another part of body.   Below is Dr. Abbosh of Fox Chace Cancer Center, PA answering to a patient's question about the subject in a webinar.

I'll mention, there's a question in the pre-webinar, that was solicited pre-webinar, about squamous cells. squamous cells, again, may sound very malignant, but they're really just normal cells that are sloughed off by the urinary tract into the urine, and they're detected by the pathologist, the cytopathologist. They're really just very... Really, they look like large flat cells with a very
small nucleus and a lot of cytoplasm. They're often considered contaminants. So, you guys may
remember, if you give a urine sample in your doctor's office, they will often give you a little sanitary pad
or sanitary napkin to sort of clean off the opening of your urethra. The point of doing that is to try to
reduce the number of squamous cells in the urine sample because, as I mentioned, they tend to be
contaminants.

The comment is also echoed in a government site saying about squamous cells in urine test.

There are three types of epithelial cells that line the urinary tract. They are called transitional cells, renal (kidney) tubular cells, and squamous cells.   If there are squamous epithelial cells in your urine, it may mean your sample was contaminated. This means that the sample contains cells from another part of the body. This can happen if you do not clean your genital area well enough when collecting your urine sample with the clean catch method.

Also, Libre Pathology (Wikipedia of pathology) site says often Large (benign) squamous component in urine cytology is not reported.

medlineplus.gov/lab-tests/epithelial-cells-in-urine/#:~:text=If%20there%20are%20squamous%20epithelial,with%20the%20clean%20catch%20method.

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1 year 7 months ago - 1 year 7 months ago #61432 by Alan
Replied by Alan on topic Carcinoma In Situ diagnosis
Clyde,

Congrats on getting through so many BCG treatments. I wouldn't be too concerned on completion of all infusions. Very few people complete these due to reactions and other factors. It is a goal, however. Heck, my URO who interned under Dr. Lamm had his own protocol of 6 on, 6 off then a final 6 weeks.

On "The only thing that cautioned me was on my cytology report under Final diagnosis after it stated "Negative for high grade urothelial carcinoma"
it said Urothelial and squamous cells present." That is a question I'd pose directly to your Doc as none of us are doctors here and I sure wouldn't want to give erroneous info about that.

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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