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Diagnosed with Low grade / Non Invasive this Morning, questions

1 year 2 months ago #54082 by sara.anne
Usually the reasons for a second opinion are if there are uncertainties or questions with the original diagnosis, or for a complicated situation where there might be differences of opinion on the optimal treatment, or if a patient does not have confidence in the original diagnosis/doctor/situation.

You have to decide for yourself what information you are seeking and whether you need a second opinion to obtain this.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 year 2 months ago #54080 by exsequor
Sara,

Thank you. Even though, I, just as I am sure all of you, wish I didn't have to be a member of this forum/society...
I am still feeling very blessed based on what my Dr., yourself, and some of my family have said regarding the positivity of my outcome.

Thank you for that explanation. The presence of muscle in the wording of pathology and his surgical report, was a little scary to me reading it originally. Thank you for clarifying not only what the presence of muscle signifies, but that the presence of muscle is a great sign. I truly appreciate that insight and clarification from the bottom of my heart.

As "fun" as cystoscopic exams are...haha... I am making extra sure that I never skip one. I already have my first preventive exam scheduled for January 12th.

Would you think it a good idea for both reason of making extra sure and easing my mind that the results really are so good; that perhaps I should request for the results to be sent to another Pathologist company for a second opinion?

Heavy Wine Hematuria: 7/28/2017
Original DX: LG/NMIBC 1.7x1.5x2cm
1st TURB on 9/12/17
1st Pathology Results on 9/25/17
1st Scope Recheck on 1/12/18
2nd TURB on 1/23/18
2nd Pathology on February 2/13/18 (TBD)

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1 year 2 months ago #54072 by sara.anne
Sounds like about as good a report as you could expect. Muscle was present so that indicates that they could see that it had not spread into the lower layers of the bladder.

The usual recommendation given in a case like yours is to have cystoscopic exams every three months for two years, followed by every six months for the next three years, and then every year forever.

Sara Anne

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

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1 year 2 months ago #54071 by exsequor
Sara Anne,

I got a second opinion appointment with the other urological firm in town. It's scheduled for the beginning of October. I can't get into Dr. Wilson, yet, or that is where I would be going.

I appreciate the insight, and even though I, personally, like the solution my current urologist is going for; that doesn't mean it will be the best solution for the cancer.

I went in and got copies of the surgical report and the pathology report today.

Pathology report was reviewed by a second pathologist in the pathology office, as I assume is common procedure.

Here's an excerpt from it, if you can give advice if you think my current urologists treatment solution seems right for this:

Final Diagnosis - Pathology Report

A "TUMOR" URINARY BLADDER (NOS) TRANSURETHAL RESECTION
-[PAPILLARY UROTHELIAL CARCINOMA, LOW-GRADE
-No invasion indentified
-Detrusor muscle present


Gross description:
-single formalin filled container
-multiple tan-brown fragments weighting 3 grams and measuring 2.5x2.4x.9 cm in aggregate.

Heavy Wine Hematuria: 7/28/2017
Original DX: LG/NMIBC 1.7x1.5x2cm
1st TURB on 9/12/17
1st Pathology Results on 9/25/17
1st Scope Recheck on 1/12/18
2nd TURB on 1/23/18
2nd Pathology on February 2/13/18 (TBD)

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1 year 2 months ago #54066 by sara.anne
You probably need to ask for a copy of the path report for your files. It is yours, you paid for it, but some people aren't interested and so the doc may not routinely hand it to you.

I assume that the urologist discussed your treatment plan with you? What did he/she suggest? At a minimum you should be having cystoscopic exams every three months for the next two years. The "dirty little secret" about low grade bladder cancer is that is has a habit of returning. If it does, you want to catch it immediately. As for the path report, did it report any uncertainties? Was muscle tissue present (so that they are sure that it did not extend into the muscle or the lamina propera (the layer below the bladder lining)?

As for a second opinion, this also is your option. If you feel comfortable with your urologist, his willingness to discuss your case with you, and the plans he has for your treatment in the future, you are probably fine. If you have any doubts about this, now is the time to explore other places.

Wishing you all the best

Sara Anne

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

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1 year 2 months ago #54065 by exsequor
Hello I am 29 years old male and got diagnosed with low grade / non invasive this morning.

I was scheduled 2 weeks out to have stents removed, and in January for the first preventive cystocopy.


I have questions why I did not receive a pathology report? Is it something that I am expected to specifically request, or should it be given to me?

Also I asked if it needed to be sent anywhere else, or if a second opinion was helpful, and my urologist said no.

I am happy with this diagnosis, but I want to play it as safe as possible.
What are your thoughts and opinions?

Heavy Wine Hematuria: 7/28/2017
Original DX: LG/NMIBC 1.7x1.5x2cm
1st TURB on 9/12/17
1st Pathology Results on 9/25/17
1st Scope Recheck on 1/12/18
2nd TURB on 1/23/18
2nd Pathology on February 2/13/18 (TBD)

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