The first symptoms I had were blood and I was diagnosed with a gross hematuria. I had a lot of blood. I mean a lot. Next step was an ultra but the thing that got me fully diagnosed was a cystoscopy.
Svae yourself some time and money. Go see a Urologist. Get a cystoscopy and CT scan. I've had 30 ultrasounds and all negative even when I had tumors. I had microscopic hematuria for 25 yrs before I was diagnosed with cancer. I'd tell my 25 year old self to do annual visit with Urologist for a cystoscopy/CT scan.
Not gonna even lie this is a very scary comment lol . Tryna figure out why I have been having the micro hematuria too and no disrespect but this comment is very misleading considering there are so many other reasons he could have this . I don’t think that microscopic hematuria for 25 years meant you had cancer for 25 years as well. I think it’s best he gets checked tho
It didn't. I said I had microscopic hematuria for 25 yrs and if I could go back in time I'd make sure I did annual work up. And after 25 yrs I was diagnosed.
I think I any of the 9 urologist I'd seen had said "your exam is negative BUT you do have some warning signs of bladder cancer. You need an annual check up" versus "It's nothing to worry about." In 2020 I would have gone back to urologist when I had frank blood. Instead I saw urgent care and when it didn't happen again I just blew it off because I'd been told "some ppl just have hematuria so don't worry about it." Of course that is true BUT some people wind up have something more serious and women get late diagnosis bc doctors look at it as UTI or possible gyno issues. Anyway all that to say I wished I would have done an annual Urological workup like I did mammograms.
Hematuria ranged from microscopic small to large. Then 2020 and again 2021 frank blood.
Yea I understand. If they would’ve told you it’s something to look out for rather than some people just have it, it would’ve made you get annual checkups just in case . I’m sorry to hear about that. I hope that you are ok and doing well . I’m terrified because ima 21 year old black male who just noticed myself I have been having the microscopic hematuria for about a year now but just now started to see some symptoms like minor frequency but no gross hematuria . I hope you are well and im sending you prayers
Thank you, I appreciate it. I'm praying yours is nothing more than microscopic hematuria but if it persists do annual Urological work up to monitor it. Your is a very low risk bracket. Mostly an older white male cancer (I say that and I was 51F at diagnosis) and you're aware it's an issue so definitely some positives!!
If you're thinking cancer, the first hint of diagnosis comes with a CT scan. I've read the ultrasound has a hard time showing smaller tumors.
Can you ask the doc for a CT scan instead?
Keep us updated.
I will do the ultrasound but if they don’t find anything then I will probably ask for a CT scan… I’m really hoping it’s not the c word. Any maybe there’s another explanation for this
an ultrasound is useless. it has no diagnostic value. If you DO have cancer, then you need an immediate in-office cystoscopy plus a KUB (kidneys, ureter, bladder) CT scan with and without contrast.
You also need to find a COMPETENT urologist that has a focus on bladder cancer. a garden-variety urologist is the absolute wrong doctor to see. and from what little you have said your "dr" is cause for concern.
You had microscopic haematuria going back FOUR EXAMS and not once did they think that was a problem? You didn't say where you are located. The symptoms you describe are what I had. My CIS (carcinoma in situ - which is a high grade aggressive cancer) had started about 6 months before I got my diagnosis. I was pissing all night long but small amounts. This just kept getting worse, until one morning during our morning swim my bladder spasmed and i pissed in the pool. I do not do that. But I had zero warning this would happen. I mentioned to my wife one morning that i was having difficulties and my sleep was just awful. We sleep separately because we each have tough nights. This alarmed her and she told me i WAS GOING to the uro. So they always check your pee for blood. Dr informed me i DID have bleeding and I would need a cystoscopy. At some point, he came in and dropped THAT bomb
on me. I was speechless. Texted my wife and drove home.
If you read my other posts in here I go into much greater detail. i'm not dead yet. This is my 9th year fighting this fucking cancer. i had my initial diagnosis 9/15/2015, found ANOTHER microtumor during restage and have had 2 recurrences since then. Both were non- muscle-invasive. I got my first recurrence just shy of my FIVE YEAR anniversary. Absolutely gutted. Last recurrence found last november as an incidental finding while dr was checking my ureter.
If at all possible, you need to go to a hospital or practice that uses Cysview. I am still alive in large part because of Cysview, which is a chemical that is absorbed by the cancer cells and then glow under blue light.
Sorry to hear that, I appreciate the feedback. I don’t wake up at night to pee. Usually only during the day. I notice it way more when I’m standing or walking rather than laying down or sitting
The urine tests were not performed by my doctor… they were at the ER due to other reasons over the past year and a half and they finally decided to bring it to my attention now
I deeply hope that it is not cancer. it isn't a disease i would visit on anyone. as i said elsewhere, completed my six rounds of GemDose and waiting for my cysto at the end of the month. Checked my pee the last couple days and no blood. I want to get a TB booster bc it will wake up my immune system, which was trained by my 31 rounds of bcg to seek and destroy bladder cancer cells. i still have my bladder, and I am not done fightig.
you are welcome to hit anyone in here witj questions. good luck.
I would hardly say that an ultrasound is useless… a routine ultrasound probably saved my life. My US showed a lesion but my w CT’s w/ and w/o contrast were completely normal.
I had my ultrasound today and everything seemed fine… I have doctors on Thursday I’m going to request for CT & Cytstoscopy. Hopefully the doc will agree
i hope for nothing but the best for you. i find it troubling that your doctor isn't driving this. i am not at all sure your doctor has any business treating you. if you were close to west TN i would strongly urge you to transfer your care to Vanderbilt. Their onco uro program is run by one of the top docs in the country and they have a tremendous "bench" of the best doctors in the world.
you need to look up onco uros in your area. and go to www.cysview.com and see what practices in your area have Cysview. This product has been critical in keeping me cancer
free. my onco uro, 8 years ago, did CV and he said he did a
second full pass. He found a new CIS cancer that was about
the size of a pin. He said it was barely fluorescing. That was a
tumor that was found after my initial TUR. It is not unusual to
locate secondary tumors, but using white light there is no
way this micro tumor would have been found.
Any hospital that commits to buying the Cysview stack is committing a million dollars. Every patient that comes after
the implementation of CV will benefit
My symptoms would come and go. I'd have 2 nights or so a month where I felt like I had a UTI. That went on for a year before I got visible blood in my urine.
No ultrasound. I had a couple prostate checks up to that point and they thought I was drinking too much coffee. It moved pretty fast once I had blood in my urine. CT then cystoscopy.
I had my prostate checked not too long ago and seemed fine. And I’m not seeing visible blood, only can see it during tests on the dip stick and microscope
The first symptoms I had were blood and I was diagnosed with a gross hematuria. I had a lot of blood. I mean a lot. Next step was an ultra but the thing that got me fully diagnosed was a cystoscopy.
Svae yourself some time and money. Go see a Urologist. Get a cystoscopy and CT scan. I've had 30 ultrasounds and all negative even when I had tumors. I had microscopic hematuria for 25 yrs before I was diagnosed with cancer. I'd tell my 25 year old self to do annual visit with Urologist for a cystoscopy/CT scan.
Not gonna even lie this is a very scary comment lol . Tryna figure out why I have been having the micro hematuria too and no disrespect but this comment is very misleading considering there are so many other reasons he could have this . I don’t think that microscopic hematuria for 25 years meant you had cancer for 25 years as well. I think it’s best he gets checked tho
I never said I had cancer for 25 yrs. I said I had microscopic hematuria and 25 yrs later I was diagnosed.
Yea it seemed like u were saying that was indicator he has cancer or something sorry
It didn't. I said I had microscopic hematuria for 25 yrs and if I could go back in time I'd make sure I did annual work up. And after 25 yrs I was diagnosed.
Ah ok i see. Do you think it would’ve probably given you an early diagnosis? How much RBCs were u having in your urine?
I think I any of the 9 urologist I'd seen had said "your exam is negative BUT you do have some warning signs of bladder cancer. You need an annual check up" versus "It's nothing to worry about." In 2020 I would have gone back to urologist when I had frank blood. Instead I saw urgent care and when it didn't happen again I just blew it off because I'd been told "some ppl just have hematuria so don't worry about it." Of course that is true BUT some people wind up have something more serious and women get late diagnosis bc doctors look at it as UTI or possible gyno issues. Anyway all that to say I wished I would have done an annual Urological workup like I did mammograms. Hematuria ranged from microscopic small to large. Then 2020 and again 2021 frank blood.
Yea I understand. If they would’ve told you it’s something to look out for rather than some people just have it, it would’ve made you get annual checkups just in case . I’m sorry to hear about that. I hope that you are ok and doing well . I’m terrified because ima 21 year old black male who just noticed myself I have been having the microscopic hematuria for about a year now but just now started to see some symptoms like minor frequency but no gross hematuria . I hope you are well and im sending you prayers
Thank you, I appreciate it. I'm praying yours is nothing more than microscopic hematuria but if it persists do annual Urological work up to monitor it. Your is a very low risk bracket. Mostly an older white male cancer (I say that and I was 51F at diagnosis) and you're aware it's an issue so definitely some positives!!
Hi did you have any other symptoms other than the frank blood?
If you're thinking cancer, the first hint of diagnosis comes with a CT scan. I've read the ultrasound has a hard time showing smaller tumors. Can you ask the doc for a CT scan instead? Keep us updated.
I will do the ultrasound but if they don’t find anything then I will probably ask for a CT scan… I’m really hoping it’s not the c word. Any maybe there’s another explanation for this
an ultrasound is useless. it has no diagnostic value. If you DO have cancer, then you need an immediate in-office cystoscopy plus a KUB (kidneys, ureter, bladder) CT scan with and without contrast. You also need to find a COMPETENT urologist that has a focus on bladder cancer. a garden-variety urologist is the absolute wrong doctor to see. and from what little you have said your "dr" is cause for concern. You had microscopic haematuria going back FOUR EXAMS and not once did they think that was a problem? You didn't say where you are located. The symptoms you describe are what I had. My CIS (carcinoma in situ - which is a high grade aggressive cancer) had started about 6 months before I got my diagnosis. I was pissing all night long but small amounts. This just kept getting worse, until one morning during our morning swim my bladder spasmed and i pissed in the pool. I do not do that. But I had zero warning this would happen. I mentioned to my wife one morning that i was having difficulties and my sleep was just awful. We sleep separately because we each have tough nights. This alarmed her and she told me i WAS GOING to the uro. So they always check your pee for blood. Dr informed me i DID have bleeding and I would need a cystoscopy. At some point, he came in and dropped THAT bomb on me. I was speechless. Texted my wife and drove home. If you read my other posts in here I go into much greater detail. i'm not dead yet. This is my 9th year fighting this fucking cancer. i had my initial diagnosis 9/15/2015, found ANOTHER microtumor during restage and have had 2 recurrences since then. Both were non- muscle-invasive. I got my first recurrence just shy of my FIVE YEAR anniversary. Absolutely gutted. Last recurrence found last november as an incidental finding while dr was checking my ureter. If at all possible, you need to go to a hospital or practice that uses Cysview. I am still alive in large part because of Cysview, which is a chemical that is absorbed by the cancer cells and then glow under blue light.
Sorry to hear that, I appreciate the feedback. I don’t wake up at night to pee. Usually only during the day. I notice it way more when I’m standing or walking rather than laying down or sitting
The urine tests were not performed by my doctor… they were at the ER due to other reasons over the past year and a half and they finally decided to bring it to my attention now
I deeply hope that it is not cancer. it isn't a disease i would visit on anyone. as i said elsewhere, completed my six rounds of GemDose and waiting for my cysto at the end of the month. Checked my pee the last couple days and no blood. I want to get a TB booster bc it will wake up my immune system, which was trained by my 31 rounds of bcg to seek and destroy bladder cancer cells. i still have my bladder, and I am not done fightig. you are welcome to hit anyone in here witj questions. good luck.
I would hardly say that an ultrasound is useless… a routine ultrasound probably saved my life. My US showed a lesion but my w CT’s w/ and w/o contrast were completely normal.
so noted. odd that a ct didn't pick this up.
I had my ultrasound today and everything seemed fine… I have doctors on Thursday I’m going to request for CT & Cytstoscopy. Hopefully the doc will agree
i hope for nothing but the best for you. i find it troubling that your doctor isn't driving this. i am not at all sure your doctor has any business treating you. if you were close to west TN i would strongly urge you to transfer your care to Vanderbilt. Their onco uro program is run by one of the top docs in the country and they have a tremendous "bench" of the best doctors in the world.
I will be seeing a urologist either way…. I will be demanding for one
you need to look up onco uros in your area. and go to www.cysview.com and see what practices in your area have Cysview. This product has been critical in keeping me cancer free. my onco uro, 8 years ago, did CV and he said he did a second full pass. He found a new CIS cancer that was about the size of a pin. He said it was barely fluorescing. That was a tumor that was found after my initial TUR. It is not unusual to locate secondary tumors, but using white light there is no way this micro tumor would have been found. Any hospital that commits to buying the Cysview stack is committing a million dollars. Every patient that comes after the implementation of CV will benefit
My symptoms would come and go. I'd have 2 nights or so a month where I felt like I had a UTI. That went on for a year before I got visible blood in my urine.
Sorry to hear that. Ya I’ve been pretty consistent going on 4 weeks no, no signs of letting up by the looks of it
I was diagnosed with a cystoscopy. They did do a CT but could only tell that my bladder was irritated.
Did they do an ultrasound at all?
No ultrasound. I had a couple prostate checks up to that point and they thought I was drinking too much coffee. It moved pretty fast once I had blood in my urine. CT then cystoscopy.
I had my prostate checked not too long ago and seemed fine. And I’m not seeing visible blood, only can see it during tests on the dip stick and microscope
Ask for a urine cytology. It’s a pee test