Unsure of Next Steps

4 years 9 months ago #57701 by terrymyers99
Replied by terrymyers99 on topic Unsure of Next Steps
So I actually spoke to the pathologist at Dana Farber on this.

They don't use the "Negative, Atypical, Suspicious, Positive" model.....she said that within the slide there was no indication (negative) of anything high grade.....the slide could be considered benign and that the stones absolutley could cause this minor abnormality and on the very very slim chance this is anything at all it'd be low grade but she really doesn't think it's that especially in the scope of a clean cysto and urogram.

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4 years 9 months ago #57697 by sara.anne
Replied by sara.anne on topic Unsure of Next Steps
Urinary cytology is notorious for giving "false positives" and is not used as a primary diagnostic test. Results such as yours simply indicate that the doctor needs to look a bit further. And, as your doctor has told you, all your other problems can explain your symptoms. PLUS you are at a great place for treatment.

As Alan said, just be sure to keep that 6 month appointment!!

Sara Anne

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

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4 years 9 months ago #57695 by Alan
Replied by Alan on topic Unsure of Next Steps
You have had the "gold" standard of tests. CT scan along with a cystoscopy and cytology rreveal most bladder cancers. What you describe probably means it is not bladder cancer understanding no one here is a doctor! At some point in time you simply have to trust your medical team to diagnose things. Stones and cysts are known to cause hematuria. If you still have questions on what you are seeing a second opinion can be done. If nothing else just be sure to keep that 6 month follow up.

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 9 months ago #57692 by terrymyers99
Unsure of Next Steps was created by terrymyers99
Hi...thanks in advance for any guidance on this...I'm feeling a bit lost

Appx 2 weeks ago experienced a painless gross hematuria (late 30's male no "risk factors")

Went to ER, ruled out UTI...CT Urogram showed a 7-8mm stone on left side and a small one + cyst on the other. No kidney stone pain though.

2 years ago had a scan for some stomach issues, these stones were not present.

I did have some elevated protein in my urine at the ER.

Had a cystocopy yesterday which showed some prostate inflammation but a clear bladder, at Brigham and Women's here in Massachusetts.

The cytology report notes:

FINAL CYTOLOGIC INTERPRETATION
INTERPRETATION:
NO MALIGNANT CELLS IDENTIFIED.

DIAGNOSIS:
Urothelial cells, some in clusters, abnormal in a voided urine.

NOTES AND RECOMMENDATIONS:
NOTE: Clusters of urothelial cells in a voided specimen may be associated with
such conditions as prior instrumentation or stones, but also raise the
possibility of a papillary urothelial cell tumor. Follow-up is recommended.

The Dr explained this could be from the stones I have (on both sides) and also from the prostate inflammation he saw during the scope which he suspects was more inflammed 2 weeks ago and likely caused the hematuria.

So I don't know much about cytology except if it's positive it's likely to be accurate? The Dr was very unconcerned with this finding and said we could do a follow up one in 6 months along with the ultrasound to see how the kidney stones look. He doesn't want to remove them unless they cause symptoms (they are lower pole right now so no urgency I guess).

Should I be concerned about this cytology result in light of my other testing? Should I have more scopes done?

Some browsing around the web shows prominent doc's putting very little weight on these "atypical" results especially in the face of a clean cystoscopy.

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