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New, not yet diagnosed but symptoms

6 months 3 weeks ago #55324 by aem9817
Thanks Sarah Anne. I'm assuming after the CT and cystoscopy there's really nothing else left then right? I guess I just am shocked that after several episodes of gross hematuria over several months (without any evidence of either infection or microscopic blood on urinalysis) they didn't find anything, not even stones. I've heard of this being a possibility with microscopic blood but haven't found anything in regards to an unexplained reason for gross hematuria. I'm sure I will continue to be monitored by my urologist and in the meantime trust that everything that could have been done has been. Thanks again for your kindness and best of luck to you!

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6 months 3 weeks ago #55323 by sara.anne
Congratulations!!!

With all the tests that have been done, you probably can just relax and enjoy life. A second opinion is warranted for a number of reasons....you don't feel comfortable with the doctor or his recommendations, there is a question or doubt about a recommendation or diagnosis, it is a very serious diagnosis and there are multiple options for treatment, there are complicating other medical conditions....you get the idea. Not sure than any of these sorts of questions apply in your case.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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6 months 3 weeks ago #55322 by aem9817
Hello everyone. Just an update, I had my cystoscopy today and he said my bladder was clear. Also had an abdominal and pelvic CT scan with and w/out contrast. My uro called me hours later to let me know there were no tumors or stones found. I’m obviously incredibly relieved but at the same time wondering if anyone thinks it would be wise for a second opinion? I do follow up with him in 4 weeks as standard procedure so I’m sure I’ll know more then.

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6 months 4 weeks ago #55309 by aem9817
Hi Sara Anne,

Thanks so much for responding. I went to the urologist this morning and we will be doing a cysto and CT scan on Thursday. Again, my urinalysis showed no trace of blood which is why I'm so worried as I've read many stories that began with episodes of gross hematuria but with none detected in urine tests.

I have incredibly bad anxiety and it's so hard to tell if this back pain and pelvic pressure I'm experiencing is unrelated (as I've had it on and off for a while) or worse in my head than how I really feel. Of course since bladder cancer has been a possibility by symptoms have gotten 10x worse. I also have been experiencing for months occasional night sweats (not drenching, just really enough to make the back of my neck damp) which I never thought twice about either until now. I just wish I was more educated the first time I thought I spotted blood in my urine last July and followed up on it as I'm so worried it's too late now for treatment. I have literally made myself sick over this.

I will update more after my tests later this week.

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7 months 3 days ago #55294 by sara.anne
First of all, please calm down! Easy for me to say, I know, but it is unlikely (but possible, of course) for you to have bladder cancer. There are many, many reasons for blood in the urine that are NOT bladder cancer. And while there was a pink color, urinalysis did not show any blood? Even items in the diet, such as beets, can cause a coloration.

Usually there are no symptoms such as you describe (pressure, back pain) with bladder cancer. Statistically you are a bit young for such a diagnosis, although again, it is possible.

You are doing the right thing in going to a urologist. He can determine for sure if it is bladder cancer or not. And please remember that even if it IS bladder cancer, this can be treated and is often very curable.

Please let us know how this turns out!!

Wishing you all the best

Sara Anne

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

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7 months 3 days ago #55293 by aem9817
Hey everyone. I'm in a very bad place right now and figured this was the best place to turn. I'm a 33 year old female, no history of smoking, no personal history of cancer although at 42 my mom had a cancerous colon polyup removed. Last July (so about 10 months ago) I had noticed a pinkish tint to my urine one time. As it was on a Saturday I went to an urgent care. They did a urinalysis and said there was no microscopic blood in my urine and no infection. I ended up getting my period a day later so I thought maybe that was it. I should note, I had an IUD at the time and while my period never looked pink when I had it in, I figured that had to be it. Fast forward to mid November and I saw a few drops of bright red blood in the toilet and again, assumed it had something to do with my IUD and never went to the doctor. Again about a week ago on Monday, while my urine was clear I saw a light pinkish tint to it on one instance. I knew my period was due later that week but found it odd to be "spotting" that early. On Thursday of that week in the morning the pinkish tint happened again and there was pink on the toilet paper. Again I thought maybe my period was arriving but by mid afternoon there was still no sign of it. I decided to follow up with my doctor and got an appointment the next day. They ran a urinalysis and again, no microscopic blood detected and no infection. Naturally the night before I had googled and noticed that all signs point to bladder cancer. My doctor said it "wouldn't be a bad idea" to follow up with a urologist. I should note, I did end up getting my period later that evening after the doctor appointment but I'm almost positive that's not where the blood came from. I have an appointment next Monday and am terrified.

I've had other symptoms on and off, frequency (something I've actually pretty much always had), pressure in my pelvic area, and back pain. All of those symptoms I've always just chalked up to being something else but now I'm convinced I've had bladder cancer this entire time and it's getting worse.

I should also mention that I have extreme health anxiety and since I've discovered bladder cancer as a likely cause all of these symptoms have gotten worse. Any time I've had a symptom of anything I've always gone to the doctor. When my original urinalysis last July showed no blood I assumed everything was alright and didn't think twice about it. I'm definitely beating myself up now and terrified that it is too late for me.

Has anyone else had an experience where they waited too long, experienced other symptoms by the time they were diagnosed and it still ended up not being as bad as it could have?

Thanks for reading.

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