Looking for your insights.

1 year 4 months ago #59569 by Jack R
Replied by Jack R on topic Looking for your insights.
EaglesR3

The following link talks about things that change the color of urine. See if anything sounds familiar, while waiting for a medical opinion.

my.clevelandclinic.org/health/diseases/15357-urine-changes#:~:text=The%20most%20harmless%20changes%20in,can%20also%20turn%20urine%20orange.

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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1 year 4 months ago #59567 by EaglesR3
Replied by EaglesR3 on topic Looking for your insights.
Thank you, I have learned some patience with my husband's 11 year cancer battle and most recently he has dealt with another issue that COVID-19 just magnifies. Medical forums have been a great source of information.

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1 year 4 months ago #59566 by sara.anne
Replied by sara.anne on topic Looking for your insights.
As you probably read on the older posts in this thread, even if the odd color is caused by blood that doesn’t mean that you have bladder cancer. While this can be a symptom of it, there are a multitude of other things that can cause this. Sometimes the cause is never found.

I could advise you to relax, I know that you are concerned and will be until you get an answer.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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1 year 4 months ago #59565 by EaglesR3
Replied by EaglesR3 on topic Looking for your insights.
I noticed bright orange color for my urine. I called it highlighter orange. It would last 1 day (10-12hrs) then not happen again for a week almost exactly. No other concerns so I just wait to see if it happens again. It has now for at least 2-3 months. Today I had a urinalysis and will wait again. The research I've done is only from the strange color with it only directing me to bladder 'issues' I'm 53 no health concerns. I'm my husband's caregiver so I'm above the mark of hyper concerned. Sorry it's wordy...

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3 years 2 days ago #56350 by dfwmaya
Replied by dfwmaya on topic Looking for your insights.
Thank you so much, Sara! Some days are harder than others, some moments are harder than others.

I will definitely keep you posted. Might be trivial in the long scheme of things, but the urologist completely dismissed the CT Kidney stone results, but that $1500 is still a burden that I have to bear. And, I realize this might be just the beginning in a long trajectory of tests.

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3 years 2 days ago #56349 by sara.anne
Replied by sara.anne on topic Looking for your insights.
Boy, do I understand that the uncertainty can do you in! But you are doing all the right things and so are your doctors. Too often a primary care will look at a situation like yours and just think that urinary blood is just a “female thing” and let it go. At least they are doing everything that they can to discover the cause.

However, hematuria can come from many causes other than bladder cancer. Many patients never discover what caused their problem. You need to be prepared to find that this is the case here. The fact that the urologist didn’t see anything during cystoscopy is a hint that it is unlikely that it was caused by bladder cancer.

Please let us know what the CT uro gram shows. Even if it is bladder cancer, when found early it is highly treatable.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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