3 years 10 months ago - 3 years 10 months ago#51911by Alan
Sara Anne and Jack always have well thought out posts of which I usually concur, as well as this one. CT scan and cystoscope are the two gold standards for checking bladder cancer. I too had a "false" positive cytology in my 7th year check so it does happen. One idea popped out of my mindless ideas (a little humor at me), perhaps instead of waiting a year for the next checkup you may want to change it to 6 months-as a just in case and peace of mind!
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.
Hi Sara Anne,
I just want to thank you for taking the time to welcome me to the forum. I am so glad I found this site. Thank you for your information. It has given me some peace of mind in regards to the healthcare that I am receiving at the VA.
The following, older, large scale study from John's Hopkins addresses the question of outcomes following an abnormal cytology. The article title is, " Atypical squamous cells in exfoliative urinary cytology: clinicopathologic correlates".
This study found a small percentage of cases of disease on follow up after an unknown period of time.
The article suggests that looking beyond the urinary tract may be of value.
At the least, this article may be worth discussing with your health care team.
I hope this starts you on the path to find more information on your particular situation.
As Sara Anne noted, urine cytology findings must be used with caution. Absolutely stay on top of this - ask for answers and continue with regular follow-ups.
What's with this Bleeding ? 6/2015
DX: 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...
Welcome to the Forum....there are many others here who will surely have answers for you also!
Urine cytology tests (the kind that "found" abnormal cells in your sample) are very useful, but must be interpreted with caution. They are very sensitive, which means that they can find things that are not there. They are to be used only as a supplement to all the other tests that your urologist has done. If the results come back "abnormal' this indicates that other tests such as your cysstocopy need to be done. I think your urology team is doing exactly what they should be doing, which is to keep a close watch on things. I do understand that it is hard not to panic, but it is very possible that there is no cancer. BUT BE SURE TO KEEP THAT ONE YEAR APPOINTMENT!
If you do feel uncomfortable with the situation, you might want to seek a second opinion outside the VA system. If you are able to do this,it might help to set your mind at ease.
Once again, the fact that nothing was done when occult blood was found in your urine, shows why bladder cancer, for example, can get missed in women....no body pays attention to a little blood!!!
BTW, IF you have any symptoms such as signs of a urinary tract infection, go back to the urologist immediately.
Wishing you all the best.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
3 years 10 months ago - 3 years 10 months ago#51902by Cfree1111
I am veteran who is currently using the VA for all of my healthcare needs. I am a 45 year old female. I was recently told by my primary doctor that i have blood in my urine. She noted that my results from the year before also showed blood in my urine but was never followed up on. So she tested my urine again a couple of times and it still showed blood in my urine. I can not see blood, it is seen in lab. So she tested me for infections and then ruled out kidney stones with a CT scan. They said my kidney function is normal. Next step was the urology for cystoscopy. They took urine sample first than performed procedure. They did not see anything with camera but called me a week later and told me that there were atypical squamous cells in my urine that should not be there. They had me do another urinalysis to make sure that the test wasn't a mistake for some reason and it came back the same way. So they had me redo everything in Urology 3 months later and again I did urinalysis and then cystoscopy. Again, they said they do not see anything in bladder but when I called back for urine results, they now say that there are precancerous cells and that all they can do is just check me again in a year. The VA usually has these specialty clinics give the information to your primary and its your primary's nurse that you end up talking to. I have questions about what these results mean and their plan of action, so I called Urology myself. They said they would have a nurse practitioner call me, but it has been days and i have still not heard anything. I suppose my main question is, does the presence of these precancer cells mean that i will definitely be diagnosed with cancer in the future, and if so, does it only indicate bladder cancer or possibly another type? Are there things i can be doing to help myself if a diagnosis isn't inevitable or even if it is, like some sort of diet? If so, is there a specific kind of diet that someone can suggest? I'm also wondering how common it is to find these cells in someone like me who also has consistent blood in their urine. Lastly, I'm wondering if waiting a year to redo test is really the best action for me or if i should seek medical care outside of VA for further tests at this time. Thanks in advance for any help i can get. I cannot find any answers online.