Not diagnosed but worried

[Madi]

Hello everyone,

I will try to keep my story short. I had pink in my Urine the within last couple of weeks on one occasion with pain. I went to ER and they did a CT scan and then an IVP? CT scan. I was referred to Urologist because the radiologist thought  there was a 2mm defect at the Urita? Anyhow, the on-call Urologist said no there isn’t it looks like a kink and he said he had this confirmed with two ‘other radiologists’…..my GP told me accept this is cancer based on the Radiologists report that it may be a TCC at the junction.  I then went for an office app with a different Urologist who spent an age looking at my three scans. He said this looks nothing like cancer and there isn’t a kink and that it was just the delay when fluid comes down. So, he said that I can go home and sleep easy but by law he now has to do further tests. (He said he is now forced rather than wanting/needing). He said if it was up to him he wouldn’t be dong anything else. It turns out also that I had a UTI bacteria when they did my urine test. So now, I am having a cystoscopy and urine checked. I am booked for Cytoscopy in  3 weeks time.  The rest of the scans including bladder was unremarkable, no cancer in any places. I am so scared though in case there is something like the first radiologist said. Does anyone know how accurate the two Urologists may be with saying there is nothing? (and the other two radiologists?) I can’t seem to get past what the first Radiologist said. My Urologists said he isn’t going to look any further than the bladder because he felt it was overkill and the main reason he wants to check is I am a past smoker (stopped 10 year ago) and my mother had a prolapse and by law because I have been referred he has to do something.  Sorry so long but any help appreciated from a very scared Madi

[marysue]

Hi Madi:

All blood in the urine needs to be investigated.  My suggestion is go for the cystoscopy exam because this exam will allow the urologist to see the inside of your bladder.  He will be able to see any tumours if they are there and if anything needs to be done in terms of surgery or treatment.

Secondly, I’d insist on getting the “kink” rechecked to make sure that it is just that – a kink.  Tumours can grow in the ureters and will affect urine flow into the bladder. You also want to make sure that the kink is not a tumour because if it is and it is left untreated, the cancer could spread.

Another possibility to get checked out if it turns out NOT to be cancer but there is an actual kink in the ureter; Is this a birth defect and could you have had a kidney stone in the ureter and passed it which may have caused you to have blood in your urine?

I was born with a kinked and twisted left ureter which caused me to get stones in it and my left kidney and also had blood in my urine.  Surgery fixed it.

It is scary and confusing when you get different answers from different doctors.  We are not medically trained so we don’t know who or what to believe. I hope my answers help.  Take care.  ((((HUGS))))

[Jack Moon]

Hi Madi

Mary Sue has given you good advice. The gold standard for determining bladder cancer is the cysto. The exam is not painful but is a little uncomfortable.
Keep us posted on your progress, try to stay positive and be very careful what you read on the internet, try to just concentrate on support group and major cancer center sites.
Waiting for medical exams is a bummer which we all experience.
All the very best,
Jack

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