Second Biopsy Result Changed 3 Months After The Fact!!!

4 years 3 months ago - 4 years 3 months ago #58699 by Shacky73
I agree the more eyes on my biopsy the better.

Still trying to deal with let down of going from benign to HG. Reviewed only because they knew MSK was going to look the slides. So they covered their asses by amending biopsy report before sending slides to MSK.

T1 Grade 3 with CIS

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4 years 3 months ago #58696 by DonaldK
Shacky73

My initial biopsy/resection showed low-grade non-muscle invasive urothelial carcinoma - outcome was to monitor only.

3 weeks later after a second resection the dx came back as high-grade non-muscle invasive CIS - outcome begin BGC treatment.

I think the re-evaluation of your biopsy is a good thing, having more than one pathologist look over the sample provides better insight.

My second biopsy was a shock to my urologist, but she feels the pathologist is excellent and saw no reason for a second inspection. The report did indicate a second opinion to verify the findings.

I hope this helps, I know I was a bit shocked to get the higher rating/grading, but I'd rather be doing something to treat things than to sit around waiting.

Ciao

Hi Grade T1 CIS

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4 years 3 months ago #58692 by Shacky73
I continue to be impressed by MSK. I email the Amended Path report and got a call back already. Was told MSK already has my slides from the second biopsy and will review themselves. Told me they'd love to say this Amended report is rare but they see it more times than they'd like. When the path department pulls slides to send them to MSK they invariably take another look. Hence the scrutiny and Amended diagnosis.

I'll be interested in what MSK sees on this biopsy as well as my first resection from June which was at a different facility in Rochester. I had already moved to URMC for "second opinion" and to have Academic review of my case. So MSK is my third opinion. I'm glad I sought them out. Should have listened to the recommendations here and gone to a NCI center.

As much as the change in interpretation is troubling, to go from muscle present and uninvolved to no muscle present for evaluation is baffling. Makes URMC look like the Keystone Cops

T1 Grade 3 with CIS

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4 years 3 months ago - 4 years 3 months ago #58691 by Alan
It happens (I am not making an excuse for the medical profession but they are human like us) and at the same time I would have questions on why the change to the first report!. At least you have a better idea of what to attack. As an example, in my own case on the CT scan the radiologist wrote "no tumors visible or present" in the scan. My URO who was already at alert for me personally re-read the film and pointed out to me where he thought there was a tumor inside my bladder. Sure enough the scope revealed it. He also re-read the path report post TURB once it came in as I asked about how antibiotics prior can make a low grade re-read high. He said no, he read it himself, it was high grade. Just be thankful you did the extra step of a second opinion. The next concern would be with no muscle sample a second TURB may be needed and presume your Doc at MSK is on top of 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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4 years 3 months ago #58690 by Shacky73
Thanks Jack. This is my second look biopsy. My initial resection was in June and showed:

URINARY BLADDER, SITE UNSPECIFIED, BIOPSY:
- INVASIVE UROTHELIAL CARCINOMA WITH SUPERFICIAL LAMINA PROPRIA
INVASION, ARISING IN A BACKGROUND OF UROTHELIAL CARCINOMA IN-SITU WITH
EARLY PAPILLARY FORMATION
- MUSCULARIS PROPRIA IS PRESENT AND IS NOT INVOLVED

T1 Grade 3 with CIS

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4 years 3 months ago #58689 by Jack R
Shacky73

Unfortunately and disappointingly it happens. It happens in the best of places. You are wise to keep copies of all your reports - pathology, cytology, TURBT, blood values etc - and be proactive is asking about changes in reports.

The change from "Muscularis propria is present and uninvolved" to "No muscularis propria is present for evaluation" raises serious questions of procedures at the pathology lab. I hope you will at least get a letter from the lab explaining the cause of the change in the report, and what triggered such a late revision of the report. We count on these providers to support critical decisions.

Your signature line notes T1 and CIS, neither of which are noted in the report sections you cited. It may be necessary to compare the FULL reports to get the full meaning of the change. Ask about the changes, direct your questions to the treater and pathology provider.

Path labs are not perfect. Interpretation of tissues involves some opinion and judgement - often a report includes terms such as "most similar to", "there is support for", or "additional material is needed for a complete evaluation". Uncertainty needs to be identified, but complete reversal of stated finding months later is hard to justify.

I do hope that your new treater has received both reports and is s basing her/his opinion on your current situation.

Hang in there, you are helping yourself by being aware and advocating for yourself.

Best,
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
The following user(s) said Thank You: Knifedealer

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