Cytology: High-grade urothelial carcinoma to atypical sqamous cells

Hi Hector, I'm sorry your wife is going through bladder cancer.
I, too, have high grade non invasive urothelial cancer of the bladder. I just had my cystoscopy at MD Anderson and the doctor said bladder looked good. Then cytology came back:/ same diagnosis for me. No high grade found, my a few atypical cells found. My doctor acts like it's no big deal. I think because it's my bladder and not hers. I'm a 55 yo female that has had to figure so much of this out on my own. It's a shame and makes me mad, too! These doctors should really explain things better and more thoroughly, not leaving any questions in their patients minds. Or having the patient use Dr. Google. Wish I could help more, but all I know is mine was the same this time with atypical cells in the cytology report. Peace Love and Prayers for you both 🙏

Hi talltxlady,
Thank you for your reply! You are right, the doctors should explain better the findings and be sympathetic with the patient's needs for understanding their medical condition.
I posted my questions because I looked at scientific papers and literature that may explain the change in the cytology results, but no success so far.
My best regards,
Hector

@hrg, I wonder if you've had a chance to speak with your wife's oncology team about the findings in the meantime. Did you get an explanation about the change is description?

How are you doing? How is your wife doing?

Hello Colleen,
Thank you for your follow up! My wife doesn't have an oncology team, only the urologist investigating her condition, no diagnostic so far. New tests will be done in October, when we will try to clarify the change in the cytology results.
We are doing fine within the circumstances.
Regards,
Hector

Greetings Hector,
I am dealing with the same issue. My cytology reports said High grade Urothelial Carcinoma, no source found as of now. I am headed from Mayo Clinic without answers. The last cytology report said exactly what your wife’s A typical UROTHELIAL CELLS - SQUAMOUS CELL a typical.
Why the change in the report? I did not get answers.
Maybe it is just another way of saying cancer cells are present.
If that is the case then we need to be vigilant in frequent checkups for tumors.

If I learn anything new I will be happy to share with you.

Thanks for sharing this issue it’s helpful knowing I am not alone.

I wish your wife the best outcome.
Fran

Hello Fran,
Thank you for following up on my post and your wishes! I am sorry that you are in a similar situation as my wife.
I have news to report: My wife did two new cytology tests since my post. The first gave "ATYPICAL UROTHELIAL CELLS" and the second, "NEGATIVE FOR HIGH-GRADE UROTHELIAL CARCINOMA". It seems a good news, but it is uncertain. The urologist said that this change in findings happens but it is not common. A new cytology test will be done this month and I will inform you the results.
The cytoscopy procedures didn't show abnormalities that prompted biopsies. If the next cytology test comes positive, it is possible that random biopsy samples will be taken.
There is a condition called "carcinoma in-situ" that is difficult to spot in a cystoscopy. But there is a procedure, "Blue Light Cytoscopy", that allows to see this type of carcinoma. Unfortunately, there is no such equipment at our local hospitals and the urologist didn't refer my wife to another location. I have literature on this procedure that I can share with you and I may find out which hospitals at your location have the equipment.
Regards and my best wishes,
Hector

Dear Hector,
Thank you so much for the information. I hope all future test for your wife are negative.
I look forward to hearing back from you. I will share anything I learn with you.

Best regards,
Fran

Pardon me Hector & Fran, my name is Robert and I just came across your conversation. Talk about coincidence! I have an appointment at the Cleveland Clinic on Monday with Dr Amanda Nizam, who happens to be a co- author for the UNITE study group. Her input revolves around UNITE which is an acronym for Urothelial
cancer
Network
to
Investigate
Therapeutic
Experiences
Ergo UNITE study group. Perhaps, (if you wish) I would be glad to ask her about the situation y’all are finding yourselves in and maybe shed some light instead of no answers? It just sounds like you’re working your tails off to find out about some high grade urothelial carcinoma which I’d like to help and maybe get y’all some answers from the horses mouth? Robert or as known here as Chebo54

Hello Robert,
It is nice to receive your follow up message! I would appreciate if you can ask Dr. Amanda Nizam about our case.
Thank you Robert!
Best regards,
Hector

Hello Fran, my name is Robert and I responded to Hector who can fill you in on my offer, but since y’all don’t know me perhaps I can steer you toward a place to find answers. Go to google and type in nizam, a and that should lead you to her publications concerning urothilial carcinoma and of course (unless Hector already told you) I have an appointment with her this Monday which among other things we will be discussing my issues with bladder cancer & the 2 times that I had surgery for bladder cancer. I am only here to perhaps help someone like I have been helped here. Mayo is truly totally full of sharing, caring, and just downright good folks. At your pleasure, Robert or also known here as Chebo54.