1. < Bladder Cancer

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.

nihssa12 | @nihssa12 | Oct 5, 2022
In reply to @ggarrepy "I was just diagnosed with bladder cancer after a year of thinking I had interstitial cystitis...." + (show)
@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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nihssa12 | @nihssa12 | Oct 5, 2022
In reply to @cairo20 "I am just being discharged from the St Mary’s Mayo hospital in Rochester. I have undergone..." + (show)
@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 | @ggarrepy | Oct 5, 2022
In reply to @nihssa12 "The ultra sound techs told me my bladder looks very normal in Jan. I haven’t had..." + (show)
@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?

Jump to this post

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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