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Looking for your insights.
Hello everyone,
I stumbled upon this forum while looking for resources on BC.
I am a 43 year old female. Below is a rough timeline of how things have shaped up in the last month. I will try to be as succinct as possible.
I noticed blood in my urine on/about 4 November, and made an appointment to see my primary care doctor. He was not available till the 14th, so I saw another doctor from the same practice on the 10th. She did a dipstick test, and send it for a culture, and send me home with a 7-day dose of antibiotics.
All the results came back negative, so I presumed that those antibiotics went into my body for no apparent reason.I went ahead and saw my primary physician on the 14th, who went ahead and made a referral for a CT kidney stone. That evening, fearful and shivering with uncontrollable stress, I drove to the facility for the CT. Exorbitant costs, because of insurance deductible amount – the endless paraphernalia of insurance.
On Friday, the 16th, my primary physician messaged saying that everything came back normal, and that he had made a referral for an urologist.At this point, I was grasping for air from stress, and learning new things, and trying breathing exercises and yoga as coping mechanisms.
The urologist’s office called midday on Monday, the 19th, and an hour later, I was at their facility. The doctor wanted an urine sample, and told me that he did not care for the CT kidney stone results, and that I should schedule a CT Urogram and a cystoscopy asap.
I scheduled both, and that night the bleeding stopped completely. Thanksgiving week passed by in a blur, and I tried quite ineffectively to distract my mind.
My cystoscopy was conducted last Friday (30th). The doctor told me that he didn’t find anything, and that we’d need to wait for the CT Urogram results. I drove home with more heart palpitations then when he inserted that scope inside me. Beginning on the 1st of December, the blood has returned with cramping. As I write this, cramping is under control.
The CT Urogram is scheduled for this week. I have sleepless nights, fits and spurts of deep sadness, and a general feeling of detachment from the world.
I will keep you all posted. In the interim, any insights, suggestions, and advice is welcome. If you pray, please keep me in your thoughts.
Thank you for reading – I appreciate it more than I could ever articulate.
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6 Replies
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EaglesR3
The following link talks about things that change the color of urine. See if anything sounds familiar, while waiting for a medical opinion.
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 -
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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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 -
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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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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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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