What were your symptoms before getting diagnosed with bladder cancer?

At 82 years old, I was diagnosed with stage 4 bladder cancer about nine months ago. The diagnosis came as a shock, as I had no symptoms at the time. I was at the Mayo Clinic for an unrelated issue—atrial fibrillation—when the cancer was discovered. The Mayo Clinic deemed the cancer inoperable and sent me home to begin immunotherapy.

I endured five months of immunotherapy, but it was brutal. The side effects were overwhelming: I couldn’t eat, was constantly fatigued, and suffered from extreme itchiness. Eventually, I made the decision to stop the treatments, as they were taking a severe toll on my quality of life. In hindsight, I would not recommend immunotherapy for elderly individuals like myself.

Currently, my primary symptoms are frequent urination and neuropathy in my hands and feet, which I believe is a side effect of the treatment. Despite everything, I’m managing without pain and focusing on maintaining my quality of life.

Hello @karibear5, it must be very difficult to have this issue still undiagnosed. I advocate for second opinions especially after my husband's experience 5 years ago with diagnostics. He had blood in urine with no pain or other symptoms. CT read locally said normal. Cystoscope done locally said normal. A FISH test sent to MAyo Clinic checking cells in the urine said high grade urothelial cell cancer. That was ignored by local doctor. An executive physical at Mayo that had been previously scheduled connected us with a doctor who identified the need to pursue this and when Mayo radiologists read the CT scan done locally they immediately saw the tumor in a diverticulum off the bladder. Long story short, keep looking until you get an answer. You could request a FISH test from a urine sample. Do you have a large referral center or teaching hospital nearby to request a referral? Keep looking, ask for second opinions, advocate for the best care possible until you get answers.

Hi, I did not get a diagnosis quickly. I experienced back pain & abdominal pain for 6 months & finally was referred to urologist & had cystoscope which revealed high grade non invasive bladder cancer. Please get a second opinion. You are your best advocate!

Hi Karibear5
I had blood in my urine as the first sign. I also started having urinary urgency re-occur, which had been taken care of after a hysterectomy for a massive fibroid.
I had all kinds of tests, urinalysis, culture, abd CT , obgyn work-up and nothing came up, until I asked to see a urologist
A cystoscopy found the cancer.
Hope this helps

I had surgery 2 months ago to remove cancer on my bladder.
They did a chemo wash for a hour during and at the end of the surgery.
All seemed fine. Two weeks later a little spotting in my urine but it has been clear for over a month.
I am now experiencing lower back soreness on my left side.
Is this a sign that the cancer is growing back?
My next cystoscopy is not unit April.
Anyone who may have experience with this or any comments would be appreciated.

@karibear5, I wanted to check in with you. Did you have further testing? Did you and your doctor find the cause of the bleeding? How are you doing?

The spotty clots have not come back. Probably a little left over from the surgery and the bladder healing.
The back soreness is on and off.
Today I left a urine sample and asked about the FISH test.
Seems like most of the regular DR. D.O. have no idea and just send you for more testing to make more referrals.

Thank you for reaching out. I'm 81 and waiting to hear what they are going to do. My cancer has returned 3 times. Now I have High Grade Non Invasive tumors that were removed. The Doctor is slow to decide to tell me anything. He had said BCG but sitting in limbo.

I had BCG for about one and one half years. Did not work for me. Biopsy said cancer was not invasive, but after consultation with my Oncologist I decided to have my bladder removed. Glad I did because cancer was invasive. Just FYI. Might want to look at some of my previous posts to see if it will help you going forward.

Go see a urologist or oncologist. Forget generalist