What were your symptoms of Bladder cancer? Scared I have it.

Posted by nihssa12 @nihssa12, Sep 30, 2022

Two years ago I started to have pelvic pain. Many ultrasounds later I dragged on by my gyneo who eventually changed her mind and sent me to urology. I’ve been peeing blood clots and have micro hematuria. Also been peeing mucus, white and black sedement. I still have pelvic pain.

Going to finally get a urinary and kidney ultrasound and a cystoscope come November.

I honestly am terrified and feel like I already have cancer and that it’s too late for me. That I’m destined to die.

Any stories or reassuring testimonies?

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

My only symptom was gross blood in my urine; I mean bright to dark red blood. I was treated for bladder infections twice with antibiotics and forcing fluids. After the second failure of that treatment, I had a cystoscopy which was clear. Then I had a urine work up and that came back positive for cancer cells in my urine.. I think that was cytology.. not sure.
Since the bladder was clear, they did a scan of my abdomen which was positive for a tumor in my left kidney pelvis. Biopsy came back as Urothelioma in the pelvis lining.
On June 18th, 2025, I had my kidney and ureter removed. We thought that was going to be it, but the biopsy on my kidney after it's removal caused them to change my tumor from T0 to T3, from low grade to high grade and from noninvasive to invasive. Only 7% of kidney cancers are urothelioma, and that's what mine is.
I was stunned, all the doctors were so positive it would be a cure after removing the kidney. Suddenly, I am talking to an oncologist about treatment options. They are recommending chemo, but I also can opt to watch and wait. immunotherapy is not recommended for me due to some other health issues I have.

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I went a year and 1/2 I had bleed twice and was having pelvic pain, went to five doctors that said it was menopause finally went to a urologist who sent my urine specimen off came back showing cancer then he did CT and it showed a tumor in my bladder, I then had a cystoscope and surgery , I’ve gone through two surgeries over 1 year , BCG treatment,go back in July for a cystoscope praying it has not come back

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Prayers for you, I went 1 1/2 years with symptoms before I was diagnosed

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I have a moderate of blood in my urine they r going to do a culture Urine and a urinalysis I am scare its cancer don't have any symptom's

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Is a burning sensation a common symptom?

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Please Please don't be so scared.
My bladder tumor was found with a CT scan.
Please work with a urologist and have cytoscopies done. Please be proactive an push your doctors. We have to advocate for what is best for us! Not them or the system!!

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@nihssa12

The ultra sound techs told me my bladder looks very normal in Jan. I haven’t had gross hematuria except for a very tiny blood clot or two. I have no bacteria but will ask for a cytology. I’m 22.

I’m sorry you got diagnosed but I’m pleased to see you’re doing well. Did your doctor happen to mention the most common stage of bladder cancer when it’s found and how long it takes them to grow depending?

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You are young and probably just fine but any hematuria without infection deserves a look-see just for peace of mind. I’m 78 and if I have non muscle invasive, which is probably likely for first diagnosis, then I will have weekly treatments for six weeks and constant follow up. Urothelial is the most common type.
I wish you the best and it’s good to be your own advocate.

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@cairo20

I am just being discharged from the St Mary’s Mayo hospital in Rochester.
I have undergone a radical cystectomy. They’ve taken my entire bladder, ovaries, fallopian tubes, pelvic lymphatic system and part of my intestine to form a new bladder – neo bladder. I consider myself very lucky. I did not have to undergo chemo, they did not take a portion of my vaginal wall, they did not take my uterus.
I am a 68-year-old woman. Two years ago in March just as Covid was starting, I had what felt like a urinary tract infection: frequency, urgency, painful urination and most importantly blood in my urine. It took me a while to get care because of the Covid situation. I did have a CT and a cystoscopy. They SAW nothing at the time. Two years later again in March, I presented with the same symptoms. This time I was told I had bladder cancer. I underwent two TUR-Bts ; The second one determining it was into the bladder muscle wall and the treatment for that was a radical cystectomy.

I am a retired registered nurse. I know the system. I tried to use the system in my home town, but couldn’t find the treatment in a timely manner that I needed. So I called the phone number that Mayo presents on their website.
Within three days I had tests set up, My current history, labs, and procedures scooped into Mayo’s system and an appointment with the Urologist at the end of three days testing. I was scheduled and had the cystectomy on Sept 28 and am going home today 😊
I have never seen such efficiency in a medical facility. And such skill and compassion of all the medical personnel.
My advice to you if the CT and cystoscope come back negative, ask if they can do cytology to be sure there’s nothing there that can not be SEEN. The treatment varies for the depth of the tumor. So much easier to have had just installations instead of the whole reconstruction!
I LOVE THE MAYO CLINIC !!!!

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I am 22. I hope you are doing better now and I appreciate your comment. I will ask for a cytology. What stage were you? Mines started a year into COVID really. But doctors have been watching

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@ggarrepy

I was just diagnosed with bladder cancer after a year of thinking I had interstitial cystitis. Never bacteria in the urine culture but started seeing blood in urine. I had a CT, then a cysto to confirm then just had a TURBT to remove the tumors. Waiting for a final path report. Lots of options out there for treatment. Get seen and get treated. It will be okay. You’ll get through it.

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The ultra sound techs told me my bladder looks very normal in Jan. I haven’t had gross hematuria except for a very tiny blood clot or two. I have no bacteria but will ask for a cytology. I’m 22.

I’m sorry you got diagnosed but I’m pleased to see you’re doing well. Did your doctor happen to mention the most common stage of bladder cancer when it’s found and how long it takes them to grow depending?

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@linh

I suffered pelvic pain around two years ago. I went to my doctor with complaints about it, & read their note later which spoke about upper abdominal pain (note: not seen at Mayo Clinic). So I felt like a goner too, how could there be such disconnect(?). Even though I was actively experiencing pelvic pain while a pelvic ultrasound was being performed the radiologist was unable to pinpoint the source. I am still kicking! The pain eventually went away.

I wondered if you have had a recent urine culture and sensitivity lab test? My father suffered interstitial cystitis and he told me you need a culture and sensitivity to detect it. The black sediment you mentioned makes me think that a urine strainer (Urology staff might provide) may be helpful to check for small stones.

I passed what is called frank blood when was much younger. I went to a highly rated Urologist (It took four surgeons to take over his practice when he retired, which he soon came out of and taught for years!). His findings were negative and nothing sinister ever materialized. I remember this doctor, in answer to my question about taking supplements like vitamins telling me "You can take what you want just take lots of water with them." So that is my advice to you is drink lots of water while you await your test.

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My urine has been clear with the occasional blood clot. They don’t seem extremely concerned but I am of course. I do not care about dying, but I care most about leaving my husband.

Thanks for your comment. I have much more testing to undergo. Unfortunately they are all in November

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