Atypical Squamous Cells in urine cytology

Hi Di,

I was diagnosed with invasive high grade Upper Tract Urothelial Carcinoma (UTUC) of my right kidney in March 2022. Kidney, ureter, bladder cuff removed August 2022. Pathology report stated squamous differentiation present. Immunotherapy started in October 2022. My late January 2023 CT scan showed no issues. My early March 2023 bladder scope and cytology showed suspicious lesions and atypical cells. Resection done on lesions; just posted pathology report was High Grade Papillary urothelial carcinoma (non-invasive at the moment). Lynch Syndrome is listed as a risk factor for UTUC. Perhaps you should ask your urologist/doctor for a cytoscopy to "eyeball" the bladder, sooner rather than later. My urologist said the lessions were too small for the CT scan to pick up.

Thank you ever so much for sharing your journey with me! Very informative and I certainly wish you all the very best!! Do you have Lynch, by chance?

I have an ultrasound tomorrow and then we will decide what to do next but she has mentioned a cytoscopy. Was it terribly uncomfortable for you?

I have talked much about the possible benefits of curcumin. It seems worth talking about since I believe it help me to become cancer free:

This is absolutely fascinating. Thank you so much for taking the time to provide me with all of those links. It will be added to my day!

Hi Don,

I have a botle ready to use once I stop passing blood clots from the TURBT last week. Warning on bottle said do not use before surgery. I have anemia issues so want to make sure I am not going to bleed out.

Utmost important to talk to your doctors about anything you do. If you are anemic, I would deal with that(possibly b-complex supplements). While you might benefit from the anti-inflamitory properties of curcumin now, your blood counts may be more important,

Theoretically, curcumin may increase the effects of anticoagulants and antiplatelet agents – possibly increasing the risk of bleeding – because in vitro and animal studies have shown that curcumin can have an anticoagulant effect1.Oct 24, 2022

Going to go out on a limb here as I can see no one has posted in a year.
I have Lynch Syndrome passed along by my mother to both of her children, my brother and me.
He has had a couple of rounds of colon cancers, but thankfully, has not had recurrence that we know of in several years. Is checked every other year as am I, with colonoscopy and endoscopy.

I followed my mother with endometrial cancer in 2011. She also had thyroid cancer in her 30's but science is not sure if that is a Lynch cancer or not.
She had kidney cancer in her 70's, which she found herself actually. She had had an annual physical and the doc didn't find the time to let her know that she most definitely had cancer judging from the amt of blood in her urine. Had she not called his office..... She was having no symptoms and felt fine.
After I found out I had Lynch (in my 60's) which was something I suspected, I had already had the uterine cancer and complete hysterectomy.
I decided I had better find a urologist that was highly recommended. She had no idea what Lynch was. Sigh. Renal cancers are common with Lynch. She sent my urine for cytology (good) and did a kidney ultrasound. Also good. However, I did ask about a bladder US as well. She said it would not be helpful. She did not suggest a cysto. I did end up having two due to unexplained bladder pain. She is a miserable person, very impatient, doesn't like to explain things and has no problem saying "I don't know" with the unspoken meaning being "Nor will I find out." However, she is very smart and she likes me because I treat her well and kid around with her. Whatever it takes. The last time I saw her, she said, I don't need to see you for 18 mos. It felt wrong.
In researching, I see that those with Lynch, esp with any specific familial cancers, should be studied every year. With renal cancers, at least a cytology, cysto, US of kidneys and bladder.
Any thoughts or feedback would be appreciated. Thank you.

You need to go to a major cancer center and be seen by its Genitourinary cancer specialists. Bladder cancer does occur in women, but it is often not diagnosed until a later stage because of the factors that you have noted.

Hello @glinda47. My husband has battled bladder cancer for 5 years now with most of his care at Mayo Clinic in MN. His local urologist missed his first tumor as did the radiologist reading the CT. Through this long journey he has not gone longer than 6 months for recheck cystoscopy, and/or CT. Even after a radical cystectomy with Neobladder surgery. Mayo urologists stay on top of the metastatic possibilities even without a Lynch background. I would recommend a second opinion from a top notch cancer or referral center. Are you near one at all? We travel OH to MN multiple times a year for our cancer care at Mayo.

Wow, what a story.
I am so glad your husband has received the quality care you both deserve.
And sounds like you've been through a lot to get there.
Yes, I am about 40 min from Johns Hopkins and also several hospitals with trusted cancer centers in DC - about 1 hour away.
Thank you for sharing, I need to get an appt at Hopkins and stay on top of being checked as I am regularly for colon and gastric cancers.
Take good care, both of you and again, thanks.