What else could it be at this point? Desperate for responces

5 years 5 months ago #55947 by scared2018
Charles, did you figure out what it was?

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6 years 2 months ago #54600 by Charles1711
Well I'm simply terrified at the moment. I keep urinating more and more of these little flakes which I assume are blood related
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6 years 2 months ago - 6 years 2 months ago #54599 by Jack R
Charles,

There is no need to appologize or beat your self up over your reaction to the fear of cancer. This is a place where you can freely ask questions, and receive responses from people who have been there, people who understand what your are going through.

Many of us who come here have had our own gut-level reaction, ofren based on prior experience with a friend or family member who was afflicted with cancer. That past can create strong personal demons that claw at us and are often hard or impossible to shake off.

Please do be aware that it will take some time to get answers. You cannot expect answers at a first appointment, Diagnosis takes time, and may require referral for testing and results; it is a process.

Be assured, you are doing the right thing in seeking to identify or rule-out urinary tract cancer. Although unlikely, the treatability of urothiel cancer, when caught early, makes early intervention the smart move.

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

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6 years 2 months ago - 6 years 2 months ago #54596 by Alan
Charles,

You WILL get through this and a week to get the cystoscpy isn't too bad. However, if your schedule is flexible you might call and let them know you are open to replacing a cancellation and explain why with the frequent urination. Which BTW does fit a possible over active bladder per your list. I almost kick myself making that suggestion because I have learned too many times not to assume but, to wait until actual facts are known.. As Jack and Sara Anne have said the odds are still against BC! There are many of us here to listen and have been there and done this.

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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6 years 2 months ago #54595 by EdFlaherty
I can appreciate how you feel ... I felt the same way when I had blood in my urine. I still feel it every time I go to the doctor. Fear of the unknown and apprehension are a big problem and it is difficult to find reassurance, but in my experience it is never even close to what I've been fearing.

I was diagnosed with blader cancer 4 years ago, it is difficult and inconvient, but it is very much treatable.

My biggest problem has not been bladder cancer or treatments, it has been fighting the fear.

It gets better as you know more, I've heard it refered to as the "new normal". There is a lot of information available online and it can be overwhelming, by taking little steps and talking with your doctor you can develop the understanding that you need.

This is a good site, so don't be afraid to ask questions. I woud say that you need to try to realize that you are fight your mind and the fear as much as anything. Try to take encouragement that we all have fears and it has never been as bad as we imagined. Good luck!
The following user(s) said Thank You: Jack R

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6 years 2 months ago #54594 by Charles1711
Thank you for your reply Jack. I'm just ashamed of the unshaven, unshowered wreck I have let myself become during this process. I just read a story of a man who never really urinated visible blood, just black specs which were blood clots and it turned out to be BC. I just remembered last week I urinated a brown, squishy spec now that's completely consumed my mind.

Once again I apologize if I sound overly dramatic but I just have no other outlet to turn to. It just feels like life can't move forward until that cystoscopy is done. I live in Los Angeles and was even considering going down to Mexico to have it done faster but it just seems like that part of the country has too much a history of botched medical procedures.

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