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

Sorry to read your comment and that you are terrified. I 'knew' I had cancer of cervix when had symptoms but was months getting diagnosis and when I did, like you, felt my life would be over - that was 22 years ago! Now I am older and have various illnesses and with the seemingly increase in cancer these days, can't help but let our minds wander to the 'what ifs'. It's unfortunate that, of course, family physicians and specialists deal with the physical aspects of illness when often we need help coping with it all .. the physical and psychological/mental health side/s of it all... hope you hear some positive outcomes here but maybe also seek, even Facebook, or a local organization that provides support dealing with all this.... I am in Canada but am sure there would be a local organization via Internet search; best wishes to you and many of us have been in your shoes before, it's not easy especially until get test results... thoughts are with you 💛

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.

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.

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 !!!!

At age 64, with no previous history of bladder irregularities, I discovered bright red in the toilet bowl. Called my University Urology Dept, followed up with a quick app’t, a week later had surgery to remove a I” bladder tumor. Had monthly, then 3, 6, 12 month follow- up checks. Since then, I’ve turned 85, survived a breast cancer surgery/ mastectomy, and am feeling FINE!!……..hjtk

Wow good for you! I am also a retired RN, retired Mayo Jacksonville. I am now waiting for the path results post second TURBT to see if I have muscle invasive or not. I live four hours from Rochester. I had the same situation. I thought I had interstitial cystitis until the gross hematuria persisted.
I am happy for you. Yes it is an amazing facility. You will do well now. Good luck with your Neo Bladder. I would love to know how you do with it ongoing. Gail

That is great. You have to be your own advocate. I’m sure you were good at follow up over the years, which is so important too. Stay well and I’m happy for you too.

Realized I had neglected to include that I had smoked for 50 years before the bladder cancer diagnosis … and quit the night before the surgery, My treatment was a very early immunotherapy… BCG/ interferon A….for 16 months. Dry effective…….hjtk

I didn’t smoke but I might have a genetic component to this based on some family history so I will be contacting Mayo genetics shortly. I am hoping to have a non muscle invasive path report so I can start the BCG treatment. Two weeks and still waiting for the path report. I know it is high grade, just don’t know if it is muscle invasive or not.
Ugh!

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