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Living on the edge
Hi and thank you so much for being a kind, well wishing, informative forum. I have been on here reading for two days now and I love each one of your kind hearts. So I have not been diagnosed with bc at this point. I have a ct scan next week followed by a cystoscopy on the 21st. I do have polycystic kidney disease (was diagnosed at 19) have had my spleen and gallbladder removed due to tumors, as well as two tumors from my thyroid. Sorry for the back history as it isn’t necessarily relevant to what is going on now. Two saturdays ago I started passing blood clots in my urine. It lasted until Sunday. On Monday there was no trace of blood or infection in my urine. A test done again on Tuesday resulted in the same. On Thursday I woke up to blood in my urine that was visible for 2 days. Two days ago I went to urology. The doc did a urine test and there was a lot of RBC present microscopically. He ordered the a CT and said he didn’t recommend a scope. After talking for a bit I showed him the pictures of my urine (pre and post the negative urine test) (gross I know, sorry) and then his demeanor and recommendation changed. He tossed out the big c word (wish he didn’t) and said it was necessary to have the tests in the next 2-3 weeks. So here I sit waiting. Not sure of what to do or think. I know it can be anything and to be honest I’m use to getting news that isn’t in my favor. I just am hopeful they will do the best job possible to fix me. I woke up this morning with gross hematuria in my urine again. Thank you for listening/ reading.
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7 Replies
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Glad that this “sort of” worked out for you! At least you do not have bladder cancer to worry about.
Have a wonderful holiday season!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
I wanted to stop in and thank you all for your support. UPDATE is as follows. Bladder is clear and good. The mass of concern is in my right kidney. Not the news I expected but I guess I’m use to getting news about my kidneys so I’m not shocked either. The scope wasn’t bad. I was more scared of the unknown. My kidneys are full of cysts but one area has a solid mass. Next step is a MRI. Until they say they need to do anything with it I will treat it like the rest and just enjoy the holidays. Happy holidays to all of you and your families.
The CT scan and cystoscope are the two most important diagnostic tests to rule in or out what is going on. The good news is you have a plan and on your way to understanding what is going on. As Sara Anne posted there are MANY causes of hematuria and I am confident you will get an answer. Should it be bladder cancer it is very treatable and beatable. Let’s hope it is something simpler!
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.
Oh boy. So you don’t smoke so you couldn’t have bladder cancer. WOW. Even though smoking is the most common KNOWN cause, manymanymanymany people have it and have never smoked. And yes, the older you get the more likely you are to have bladder cancer (and practically every other non-childhood cancer) but even people in their 20’s have shown up with it!!!
Glad you are getting the cystoscopy. And it is greatly to your credit that you INSISTED that something was wrong!
And thank you for the very kind words. All of us here have been at the beginning where we didn’t know ANYTHING but panic. That is why Cynthia and Ed Kinsella founded the American Bladder Cancer Society and why so many of us work hard to keep it going.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
They will do a scope on the 21st. At first they weren’t going to because I didn’t meet the 35 and smoker risk factors. I thought that was silly so I showed the pictures. He took my current situation more serious. Unfortunately having PKD most doctors pass everything off as that without taking a look. This is a safe place to not feel alone. I know you are all surivors and I very well may not even have c but the doctors toss out the word say have a nice day see you in a couple weeks. Then what just wait relax and stay calm. I walked in thinking a cysts burst and walked out feeling so confused. The outcome of my tests I can’t change. I’m ok with that. The sense of calm you all brought to me by reading others posts and your responses is above and beyond. What you do here for people who know or are just walking through the beginning of this unknown forest sets the bar very high. More groups should be like this. Thank you all. I will keep you posted. CT is next week maybe that will give some sort of answer.
So sorry that you needed to find us. Hope with all my heart that you don’t have the c word. (I don’t capitalize it either)
But Welcome to our little club….. Hope you can happily leave us soon without the c.
But I am wondering why you are not being scoped. I was scoped within 10 minutes of my first urologist visit. And soon we were all watching the video screen and seeing those pesky tumors. And then an action plan was hatched within a day.
I cannot believe you had to show a picture to your Dr. THAT IS A GREAT IDEA !
He just couldn’t believe you when you said you had blood?Yes a CT scan is normal and helpful, but a scope is necessary visual proof. And then you will have a TURB procedure to remove the tumor and have it sent out for lab tests to determine conclusively that is is the c .
I hope it isn’t. But no matter what the outcome…. we will be here to hold your hand and help in any way we can.
But we are not Dr’s ……We are survivors who couldn’t find anywhere to get information when we went thru this. We want you to be a survivor too.Sincerely (seriously)
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
I will give you my “usual introduction” which says…sorry to see you here! I am glad that your urologist is taking this seriously and doing cystoscopy. It is brief and really non-invasive and will give him a much better idea of what is going on.
The only advice I can give right now is to try to relax; until more testing is done, you really don’t know what is causing the problem. Hematuria can have dozens of causes, and sometimes they never figure it out.
Please keep us in the loop..will be thinking really good thoughts.,
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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