Kdime
The visual identification of CIS – an thus the choice of where to take a biopsy sample – is a rather inexact science. From your description, the pending MRI is likely to provide helpful information about how to proceed.
Missing in your description is the doctor’s thoughts on how to find the cause of the blood and pain issues. Many doctors need to be directly asked about the issues that concern us.
What is the source of the blood ? How do we find it ?
What is the cause of the “erythema” – what can be done to eliminate or reduce it ?
What steps can be taken to reduce bladder pain ?
Make a list of your questions and concerns and expect satisfying answers. You should never have to guess what the doctor is thinking.
It sounds like you are finally getting a more complete workup. Be prepared with your questions and concerns when you review the MRI results with your doctor. Keep in mind, that as described, you do not have a diagnosis of cancer at this point. You are working toward a diagnosis that may very well NOT be cancer.
Best,
Jack
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
Yes, CIS can invade the tubing in the urinary tract. As many have stated on this board, a second opinion should not be offensive from the first doctor (although some are). It is a valid check and often verifies the original DX. I really believe that is what you need to do… a second opinion (with biopsy) because of your history. Others may also chime in.
Again, not to alarm you, as the majority of the time these are other problems other than cancer. You do need to find out the reasons for your issues especially if your course of steroids hasn’t ended the inflammation. Your negative cytology is a good sign but, these can also be wrong. Should it be CIS you would want to attack this quickly.
Keep asking as you have other questions.
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.
Thank you, thats what got me worried to. I wish a biopsy had been done, the only reason I can conclude he didn’t do one is because possibly my age (42 years old) and the fact he found erythema in the urethra as well (maybe he is thinking its inflammation every where which would explain the steroids). Im almost off the steroids (have two more days left), unfortunately the inflammation doesn’t feel like its completely gone. I do have another urologist I can contact, I may ask to do a biopsy if he finds something, going through a second cystoscopy is not something Im looking forward to.
Has any of you had something like this (possibly CIS with inflammation in the urethral lining as well)?
Welcome Kdime,
I had to google “erythema” as I hadn’t heard those words used before. As it is a “redness or inflammation” and it can mimic other problems such as CIS (a form of cancer), I am surprised a biopsy was not scheduled.
It appears you have had the usual course of antibiotics that should rule out an infection, so it begs the question what is the “redness”? It may even be time to find a second opinion on what this is. The majority of times these are not bladder cancer however, I believe CIS can’t be ruled out. I say this understanding none of us are doctors.
A second opinion gives “fresh” eyes and peace of mind as you want to find out why you are having undiagnosed symptoms.
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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