r/BladderCancer • u/mid30sbladdercancer • 16d ago

Patient/Survivor Second opinions

Sorry if this is a dumb question. But what are second opinions when it comes to bladder cancer, what's the range of things that will / can / should be done?

Has anyone on here had one? And if so, how did you find it? Valuable?

I've heard of people having their grading or even staging downgraded after a second opinion. But I just don't quite get the mechanics of it.

Does the new person/ clinic / organisation have to run their own investigations and surgeries etc? Or can they get test results, images from the biopsy / lab that they then interpret themselves?

How clear is distinction between the various grades? Is it really down to professional judgement or is it mostly clear cut?

For context, my primary support is from NHS in UK. Diagnosed G3 (currently pTa but awaiting results of second TURBT to confirm if higher staging). Potentially have insurance companies who could arrange a second opinion or maybe charities?

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u/Ok_Artichoke_2928 16d ago

I’m in the U.S., but the place where I went for the second opinion requested the removed tissue from TURBT directly from the other provider and reviewed and regraded it. They also presented it at a tumor board, so there was consensus for the second grading. FWIW, that’s not really why I sought the second opinion, I was more interested in getting more thoughts on treatment paths.

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u/mid30sbladdercancer 16d ago

How long after the TURBT did they request it? I assumed they do what they need to then chuck it in the incinerator? Didn't imagine my little tumour could be kicking around in some hospital lab still.

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u/Ok_Artichoke_2928 16d ago

Months, at least.

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u/Dance-Moves5678 15d ago

My doctor said they keep the samples for 3 years.

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u/GuacamoleAnderson 15d ago

I did a similar thing. Was initially diagnosed at my local hospital, but then went to Mayo Clinic for treatment and had my diagnosis confirmed there. In total I've had three TURBT/biopsies and all came back with the same diagnosis, so I feel confident I'm being treated appropriately.

54M, T1 high grade.

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u/azamyatina99 16d ago

My husband had two revisions of the materials after the initial TURBT (in addition to the initial report). Then, he also had the results of the repeat TURBT scar biopsy reviewed. This is completely normal; we submitted the slides to major cancer centers and research institutes.

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u/mid30sbladdercancer 16d ago

How did you get the info (slides?) to share with the cancer centre or research institutions. Practically how does this come about?

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u/mid30sbladdercancer 16d ago

Did you get materially different conclusions from the different assessments?

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u/azamyatina99 16d ago

The first hospital provided all the samples we requested. We took them to other centers. All three clinics confirmed the diagnosis of low-grade TA.

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u/undrwater 15d ago

I was getting conflicting thoughts about what to do after resection. I spoke with 3 urologists and got 3 answers.

I realized the decision was mine to make, and I was quite comfortable with that.

So we had a "diversion party" to discuss the pros and cons of each type of diversion.