After 5 negative consecutive 3 month scope & cytology reports being negative just had scope and no visible tumors yet the cytology came back hi-grade urothelial present again. Emailed my Uro doctor and he's not concerned see me next scope. So what.... says coming back and doctor just waits till tumors appear. All about the treatment never the cure. I am just really tired of living the life of cancer for for 4 years now life has been wrapped around treatment and in many ways not very pleasant. Guess I'm just a bit down today. God's will.
Urine cytology tests are NOTORIOUS for giving false positive results. Since your urologist just did a cystoscopy, and since you are on a 3-month recall, he no doubt thinks that there is no problem because he just checked you and besides he will be checking again in 3 months.
He would not want to do another TURB unless he was pretty sure that there was something there.
You will be fine
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Welcome to the Five Year Treatment Club. Seems to be the point that constant treatment of recurring cancer starts to takes a bite out of optimism.
You have been fighting the good fight, and you have been given a break from treating, but it does not feel like a win. We want to be pleased, but there is doubt in our minds.
What would it take for you to be celebrating a victory ? What could be done to erase the concern about the (frequently inaccurate) cytology ? What would let you call the round a "win" ?
For me, it is a MRI or full system CT Scan. I want something beyond the limited ability of human vision to set a diagnosis these days.
If you you know - or can express - what would give you the positive, supporting, info you are obviously seeking, talk to your doctor or care team. Their job it to treat your body and your spirit. Ask them to go the extra mile.
Hang in there. We are survivors, and we are not done fighting.
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021