-
Gross hematuria – any info or indications?
Hi – I’m new to this forum, here’s my story …
1) Everything was fine until three weeks ago, I casually went into the bathroom to urinate and there was blood in my urine. I mean lots of blood! It looked like a war zone – thick, red, BRIGHT red blood … and lots of it!
2) I went to the emergency room and they took a urine sample (more like a blood sample) and they drew blood … then they sent me home. I had blood in my urine that night, but it had stopped by the next day.
3) Saw urologist, had a CT scan, cystoscopy this week showed a tumor.
4) TURBT is scheduled for March 3rd (5 weeks).
5) My question is about the amount of blood that I passed in my urine – does that indicate anything? Is it unusual to pass a lot of blood? My doctor gave me the standard answers “A little bit of blood can look like a lot”. I’m not sure that I was able to impress him with how much blood there was and it did not seem to be diluted by urine, it seemed like all blood. I’d just like to know if this is “normal” (not unusual for lots of blood to be the first sign of any problems).
6) I feel good, I’m a bit anxious – but I’d feel better if I was more informed. I wouldn’t go on vacation without investigating the area and making plans, but I’m going to have a medical procedure based upon the recommendations of a doctor that I don’t really know. I’m going to see my GP but I expect he will just defer to the specialists.
7) Sorry for the long winded post … but information would help me and reassure me … I think … -
13 Replies
-
Sounds like you are in good hands Ed. We will be thinking of you .
-
My TURBT is scheduled for next Monday, went for the preliminaries Friday. They did blood work, chest x-ray, and had me meet with the anthologist. So, by this time next week I’ll be headed off to the hospital. Blood in the urine has re-occurred for me. I had some minor bleeding 2 weeks ago and some heavy bleeding last week, but it has stopped now. I was working out of town last week and staying in a hotel, so I had to give my wife a daily “Pee Report” via Email.
I want to thank everyone that has responded, it is difficult for me to be patient because I have so many questions and no one will speculate on what I can expect until after the TURBT. I don’t even know if I should expect to go home with a catheter or not … guess I’ll find out next week.
-
The best piece of advice anyone gave me with my husband’s bladder cancer is find the very best uro available to do the surgery. The initial tumor removal is critical. All uro’s not created equal. Ask how many TURBTS they do per year.
I agree with the others that visible blood does not correlate with severity of disease.
-
The amount of blood can also be affected by medications, such as anti-inflammatories and blood thinners,as tumours are more susceptible to these drugs.
-
I don’t think amount of blood seen correlates with size or number of of tumors. I had what seemed like a lot of blood to me, even some clots, several times in one day, and then nothing after. The tumor ended up being quite small, and fortunately low grade. I had a recurrence a couple of years later, spotted on my regular 3-month cystoscopy, but had no bleeding that time.
Best of luck.
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.
Agree with Sara.
Stress is correct, they found “something”. The course of action seems correct, and it could or could not be a ‘big deal’. The biopsy will help determine your situation, and yes, you have to wait again for those results. Which will determine how to proceed with your #2. More than likely, a 2nd TURBT would be scheduled. If you’re in a ‘hurry’ for all this, follow Alan’s advice and seek a different Uro for a quicker TURBT. That 2nd opinion is probably more worthwhile, after the 1st TURBT and results are in. Each patient is different, and you’ll need to get the specifics for YOU. Don’t evaluate yourself on numbers and percentages.
A referral to a urologist by the ER was appropriate…the ER is not equipped or experienced in the area of bladder cancer (and neither are some urologists!)
As for what you might be facing? No one can give any estimate until the results of the biopsies come back. It could be anything from a watch/wait situation to treatment with BCG to surgery. I can’t tell you not to worry (of course you will)
but there are no estimates or statistics that can tell you anything…yet.Patience!! (I know, it is hard.)
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Thanks to everyone that answered my query. It is good to know that you are not alone and that there are people willing to share info.
I find that I do better if I have more information, but getting an evaluation or an “estimate” from a doctor is difficult.
I’d really like to know what I’m looking at and what to expect – good or bad, I’d like to know what is most probable. I’m sure that there must be numbers and percentages, but getting the information is difficult.
With the initial diagnosis I’d just like to set some expectations …
1) Is this probably “no big deal” and the TURBT along with vigilance (including cystoscopy) is the expected course of action?
2) Is it probable that I’ll need follow-up treatments in addition to the TURBT?I think that when I went to the emergency room with blood in my urine that they could have done a cystoscopy right away and done the TURBT within a day or two. The waiting and stress are a big part of any disease and medical people should recognize the need to deal with the stress as well as the condition.
Again, thanks for your help and replies.
Hi Ed. Welcome to the place we don’t want to be. But an excellent place to find/receive information. Your story is close to mine. A rapid, unexpected flow of blood. An ER visit, sample, and visual observation with a recommendation to see a urologist. In all, about 5 weeks from uro visit to TURBT, and becoming a BC patient. Correct, you are seeing someone you don’t know, entering into the unknown. Your initial “trust” is that he/she is capable to perform that 1st TURBT and get the tumor evaluated (good, or bad). Now you know where you stand, and how to proceed. The best recommendation will be to get a 2nd opinion.
My uro did 2 TURBT’s, but I wasn’t happy with him, so switched to another uro (not a specialist), who handled my situation much more effectively.
Use your anxious wait time to research other uro’s, or possibly a specialist, for that 2nd opinion. You’re on the right track of ‘doing something’. Once results are in, you’ll have better info on the specific condition and how to proceed. Keep us posted, and questions are welcome.
You are on the right path and good you didn’t wait! I will never forget when I passed blood (gross hematuria) almost 6 years ago. Yes, I was grossed out and worried. It could have been an infection. It could have been a stone being passed. For a VERY few it can be nothing and no one knows why-VERY few but, I know a few. For many of us it is cancer, either bladder or kidney. Your URO was correct in scheduling a CT scan and seeing a tumor you are on the way to beating this. A TURB is essential after your cystoscope confirmed a tumor. A pathology report will tell about the grade-low (1) or high (3), most don’t grade the middle (2) anymore. They will try and take “margins” meaning the take enough tissue around the sample to make sure they got it all and to be sure it hasn’t gone to the muscle (stage 2) or further (stage 3 or 4). Mine was just started when it was caught almost 6 years ago. As MANY will say, a second opinion is a VERY good move as this is often under staged-get the best and an office or hospital that does A LOT of bladder cancer! Often a second TURB on these is done for safety and being correct on the diagnosis. Too many do mostly prostate problems and they are not really up to speed. 5 weeks waiting is a little too slow for me as the scope confirmed a tumor. I’d try and have that done sooner even if you have to find someone else, a group or hospital that specializes in this. Where do you live? Someone may have a recommendation. Your records are yours so if you have too you can carry them.
Read more on our site and keep posting as someone will be around to chime in. All you can do is wait until the TUIRB results to see what the next step is. It could be BCG treatments all the way to a cystectomy.
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.
I had blood in my urine maybe twice in one day in Februay 2007 and then not again until October 2007. Urine tests etc in February showed no blood when I saw my GP several days after my first sighting.
I was DX with a low grade non invasive tumor at that time and have been doing very well ever since after the necessary surgery and BCG treatments.
Joey.
The first time I saw blood I thought I was bleeding to death. Then it went away for a few weeks and then it would come back, and on and on. Finally an allergist sent me to a urologist that found the little mushroom looking things that Sara.anne talked about. It was a low grade cancer.
The main theme on this site is “get a second opinion” with a doctor that specialize in bladder cancer.
It could have been a lot of blood (I though mine was) but not enough to hurt you, and like Sara.anne said It wouldn’t have any thing to do with the severity of the cancer.
T1,NO,MO battling bladder cancer since 2005
Yes, it surely can be scary! You may have small tumors in the bladder that sort of look like mushrooms rising up from the bladder lining. These papillary tumors are one of the most common ways that bladder cancer manifests itself. If one of these tore a bit it could cause the bleeding…a little or a lot…and it wouldn’t necessarily have anything to do with the severity of the cancer, if it is there.
You are absolutely right to educate yourself. The more you know, the better patient you will be. There is a LOT of information on this web site, not just the Forum area. Take some calm time to do some reading here. We are here to answer any questions (and I know there will be some) that arise.
Best of luck to you
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum ModeratorSign In to reply.
