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

4 years 1 month ago #59085 by Shacky73
I received the follow up on my complaint to my previous provider for the huge miss on my biopsy pathology result. Here’s the response I gave after reading the generic sounding cover their ass review results.

Read the summary of review letter. Seems it is more focused on pointing out that those reviewing my case feel the misdiagnosis would not have altered the management of my case than explaining why the first reading was so incorrect.

Had I known that the second biopsy was positive I would have been much more aggressive searching for available BCG. After bringing my case to MSKCC I was told they have plenty of BCG for high risk patients like me.

So I still don’t feel there is an explanation of why the first reader could be so far off.

I respectfully ask that that be explained.

Ultimately it may not alter the management of my case now that I sought out MSKCC. Had I not, there’s no telling what the outcome would have been. To say the least, my emotions over having such a positive result reported in August only to be changed 180 degrees upon my seeking another opinion put me in a tremendously stressful situation.

I’m now having to travel to NYC for care as I’ve completely lost confidence in XXXX Pathology.

T1 Grade 3 with CIS

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4 years 2 months ago #58805 by Nix
I know your fear, it’s hard. After having low grade tumors removed, six months later I had one removed CIS high grade non invasive. Continued with BCG (21 instillations)
Now 10 years of clear cystos.
12 years total after the first diagnosis.
This is the site that gave me courage and information to go forward well informed.
Stay the course and know it can turn around.

Nix

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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4 years 2 months ago #58797 by DonaldK
If you are asking where the Mayo Clinic is - Rochester MN

Hi Grade T1 CIS

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4 years 2 months ago #58795 by Moody
Where is that.???

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4 years 3 months ago #58751 by DonaldK
Shacky73

Be assured that after the next biopsy your docs will determine the best course of action.

Unsure, but BCG may still be an option.

If Cystectomy, I know there are a number of excellent options.

A buddy of mine from AA had one done about a year ago (at the Mayo clinic) and has been managing excellently. He continues to be able to run, cycle, and swim.

Have faith.

Ciao

Hi Grade T1 CIS
The following user(s) said Thank You: Shacky73

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4 years 3 months ago #58750 by Shacky73
MSK Pathologists confirmed diagnosis of high grade papillary carcinoma with CIS.

So instead of starting BCG I’m scheduled for another biopsy procedure after holidays to determine course.

Still trying to manage feelings when I went for so long thinking I’m in great position with benign second biopsy and now finding out that was completely wrong.

Combination of anger and fear.

But I do take solace in fact that I now have one of the best centers in the world managing my case. And even if I do need a cystectomy it’s not life threatening.

T1 Grade 3 with CIS

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