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Starting with tests
In the past 8 months or so I had my 3rd sample with blood. The first time it happened I had been to my physician with the complaint that I had to go to the bathroom too often, it took forever to get just a little bit of liquid out, and when it finished I still felt like I needed to use the bathroom.
She listened and said that it is normal for things like that to change after 40, and I was probably having a hard time adjusting. Then there was blood in the urine. She told me that on the phone saying that it was probably because the sample was taken only a a couple of days after my period so why don’t I go back to give another sample at my leisure?
Not hearing any sense of urgency in the doctor’s words, I postponed it until my next physical. I hadn’t heard anything about what that could mean and yes it was too close to the end of my period and my doctor would have shown at least some concern if there was something serious. I also felt a little bad about being the 45 year old woman who had difficulty adjusting to her age and changing body.
Well, then I went for a physical last week. She didn’t ask me if my bladder issues were resolved but then I saw on my check-out report that she had removed that as a problem. The next day she calls me to say there is again blood in my urine but then again it is too close to the end of my period so I shouldn’t worry but I should leave another sample. And so I did.
You can probably guess the rest…blood again. So she called to say that she checked for cancer cells in the sample and there wasn’t any but we should start with the CT and urologist route. She said that it could be kidney stones.
Now, I am quite sure that I don’t have kidney stones. Although I almost constantly have a very slight abdominal pain, I don’t have any severe pain, and I don’t have pain in places that are normally associated with kidney stones. I read that it is possible to have kidney stones with no symptoms, but for 8 months AND no symptoms?
Based on what i read on the internet so far, assuming no stones and no bacterial infection (she checked for that), there is no way that hematuria for more than 8 months could point to something simple. Maybe something benign but not super simple.
I am very concerned right now but almost paralyzed, I can’t really feel a thing. I know I shouldn’t jump to conclusions but it seems very logical that there is something. I am praying that it is benign, but then again do they ever know for sure.
It is really not like me to have not followed up on this the first time, even when the doctor acted like I was a hypochondriac and it was all in my head. Now I am worried that I’ve lost such precious time.
Sorry if my stage is too early or indeterminate to post here. My situation is certainly not as important as those of you going through it. But I am quite shaken at the moment and I think everyone here must have been through this initial stage that I’m going through now. Any advice going forward would be much appreciated. I’ve looked over the forum and was amazed at the courage and the optimism of the posters. It was so inspiring to see the support given to the newcomers by the people who had already been through the process.
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13 Replies
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I’m so glad to hear that nothing has shown up in your testing.You must feel very relieved.
When I had bleeding I was fortunate that my primary care doctor right away started the testing needed and lined me up with a urologist. I believe they first did a sonagram, which looked suspicious enough that they recommenced CT. Even though I had a very small tumor, it showed up on both, which was confirmed by the urologist during cystoscopy.
As to the cause of your bleeding, you don’t by any chance take aspirin or other nsaids such as ibuprufen, or any prescription “blood thinner”? Urinary bleeding is a fairly common side effect of taking medications such as these, especially if you have been doing certain kinds of exercises. (My husband, who is on a medication to prevent clotting, recently had urinary bleeding which I suspect was related to doing sit-ups! He ended up getting a cystoscopy exam, and all looked fine, no cancer.)
Again, I’m very happy to hear your good news.
Ann
Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.
Great results! Never let anyone tell you to ignore blood in the urine and always follow up with a urologist if it happens again. It seems unlikely to be the urethra but that can be observed with a cystoscope.
Glad it is nothing and as has been mentioned there are things that are not worrisome that can cause blood. Just don’t assume it is always nothing or “just like before”.
Good luck!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
DC,
Glad to read your good news!
Anita
Anita
Forum Moderator
Caregiver
Hello DC… I am glad that as hard as they tried, they found nothing out of the ordinary! To quote our dear Mike (mmc), you are cancer free until someone proves otherwise!
Please let us know how your three-month check goes. Come back here anytime if you need a place to leave your worries, or just to chat with us.
Hope you don’t see or feel any more symptoms and you breeze right through the next cysto!
Catherine
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
As others have chimed in we hope you do get kicked outta here!
A couple of quick observations. It is good the CT scan shows nothing! Almost all of us have had that test. Answering about Baylor. I do believe they are well respected however, all of my research as a backup should I need them, M.D. Anderson in Houston is 1st rate and world renowned. Part of my bias might also be that I live in New Braunfels so that is about 2.5 to 3 hours away and DFW is 4.5. I have had several people I have met in my living area that have had to go there for different cancers and all have been very positive. I do know the bladder cancer group is top notch: Dr’s Grossman, Denny and Kamat are very well known.
Another note. My wife 20 years ago bleed for 2 or 3 weeks and they NEVER did discover what caused it. No UTI or cancer was discovered from several tests. Sometimes a ureter can be nicked by a passed stone causing bleeding. Who knows? I even know a couple of people that continually pass small amounts of blood infrequently and they have never discovered why.
I am certain there are a couple of more tests that run through the ureters I am sure are called for. I don’t remember the name but, my wife had that one done. The cystoscope is a standard protocol.
Anyway, here’s hoping nothing is found and you find peace of mind. If it is somethng else it is beatable!
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.
Update 2:
Cystoscopy didn’t show a growth in the bladder but hematuria continues. The doctor said that another possibility was that there might be something in the tube that goes to the bladder but that was a small possibility. In any case, I have another appointment in 3 months and I will post again for the record, so that the other newcomers can follow one more case.
I feel relieved for the next three months but a few weeks ago I’ve read about one old BC case here with no findings during the first cystoscopy and where it wasn’t discovered I think for 2 years.
Thanks to everyone for their support. I’ve looked at many posts from the past as well and I was especially touched by those who continually gave advice to the newbies without even thinking about or mentioning their own circumstances.
Best of luck to everybody and hope everyone has a healthy summer.
DC
Update: Had the CT scan very soon after my post and made an appointment with a urologist. CT with contrast didn’t show anything. The earliest appointment with the uro was for today so I am due for an exam this afternoon.
It turns out that my internist’s father has bladder cancer and the uro that I am going today is the one treating/operated on him. I think at least it is somewhat good news that he is a urologist trusted by another doctor.
In any case, I’ll post an update once it happens. Meanwhile any suggestions on things that I should make sure I ask the urologist? Does anyone know if Baylor, Dallas has a decent reputation for bladder cancer?
Welcome DC
We all can’t wait to kick you out. You really don’t belong here and we don’t want you.
We would really like you to say SEEEEEEE Ya! and go on with your life.
We love to talk bathroom humor here.
We are all trying to help you leave with a smile on your face.Please make sure you find a urologist that specializes in bc. This is the most important step in the war on bc. There is a definite plan of attack here and it must be followed. First the scope…. you can even watch your bladder on tv as they do it. And then the pathology report will tell even more.
If they need to proceed from there, they will follow a plan of minor surgeries known as TURB.A lot of us here have been through the gamut of bc, and we are here to tell you ………… We are still here…….. AND we are going to stay here.
And so will you!Right there with you
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]
Thank you, Sara Anne for hoping to exclude me from the group!
It is amazing to hear how it takes so long to diagnose women because of menstrual issues and because of our tendency to get UTIs. I had slight abdominal pain for several years and went to a gynecologist for that in 2010 but nothing showed up on the CT scan then. She had given me an antibiotic then, in case there was an infection she couldn’t find. At first it had felt great but the pain had come back after a while. Maybe that’s related to what’s going on now.
Thank you so much for reaching out to help, thanks to you all, I am able to see through a diagnosis much more calmly. (Although I can’t promise not to flip out once a diagnosis is made.)
DC, I will echo Mike and welcome you, but hope that we are able to eject you from our very exclusive club!!!
The problem with women and bladder cancer is just as stated above. My internist never orders a urinalysis…”doesn’t tell me anything.” And, looking for cancer cells in urine is like the needle-in-a-haystack….I have never had any, and I have had bladder cancer!!
I kept having UTI’s. Over and Over and kept getting prescriptions for an antibiotic. I went to a women’s clinic for an overdue pap, and the nurse practicioner I saw told me that if I had more than three UTI’s in a year I needed to be seen by a urologist ….and she gave me a list of OK urologists and some not OK ones!! About a month later, another “UTI”…but no bacteria. Went to the urologist…and the rest is history.
Best of luck to you!!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Mike,Catherine,
Thank you so much for your messages and thank you for comforting me, saying that even if the news are not good, it is very treatable.
So far you are the only people that I felt this good talking to. I can’t believe that there is such a great group here. At times, this is probably just as important as having the support of one’s family. I can’t say this enough. It is a very different feeling to be talking to people who are knowledgeable about this but who do not have the (inadvertently) detached perspective of a doctor.
I will take your advice and go see a urologist asap, even before the CT. My doctor’s nurse was supposed to call me today for a CT scan appointment but she hasn’t yet. I should start looking for a urologist on Monday. I am in Dallas, TX. If anyone knows a good urologist around here I’d appreciate the info for the doctor.
Once again thank you! I will keep posting when new information arrives.
Wishing everybody all the best :)
DC
Hello… I read your post with much interest because I very recently had a friend who went through a very similar situation. Her doctor (ob/gyn)kept telling her it’s just probably a UTI and did little to check her symptoms beyond a urine test after months of light traces of bloody urine. One night she had to go to the ER with a lot of blood and clots and the ER doctor again hardly took notice of the sample she brought along with her. After finally going to a good uro, she was diagnosed with non-invasive, low grade which is best case scenario if a person is diagnosed. Let me stress, this may not be you, but you need to know as soon as possible.
If the doctor you are seeing is not a urologist (which I assume she is not), get an appointment immediately to have a cystoscopy that lets the doctor see inside your bladder. That can be done before a CT is ordered to see if there is an issue there. It is usually only mildly uncomfortable (less so than a PAP test) and takes less than 5 minutes after you are prepped.
It is a sad documented fact that many, many doctors have little knowledge of bladder cancer and do not pursue that as a possibility. It is even worse for women because their bleeding issues are often ignored. I am not suggesting you have bladder cancer and don’t want to scare you needlessly, but this doctor has already taken so long to refer you to urology that she has lost credibility as far as I am concerned.
OK… now IF it is discovered that you do have bc, emphasis on “IF”, you need to focus on knowing that it is very treatable. There are many members here to attest to that.
So welcome… it is never too early to hang out here. We are very happy you brought your questions to us. Please let us know how things go.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Not too soon at all! Of course we reserve the right to deny your membership in the club if you don’t have bladder cancer. Which we all hope that it is something benign.
Women are OFTEN not diagnosed until later because doctors and patients write off the blood as being menstrual.
Beyond the CT, you want an in office cystoscopy. There are often things that can be seen with the scope that would not show up on a CT. Be sure to tell the urologist you want that done asap.
Fingers crossed that it is not bladder cancer! But if it is, you are still VERY LIKELY to be in the VERY TREATABLE stage.
Don’t get too attached to the urologist you go to. The reason I say that is, depending on the diagnosis (stage and grade) your next step will be to get lined up with a bladder cancer expert urologist. We can help you figure that out if that is the path you need to follow.
So either way, we have your back!
Best,
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Sign In to reply.