Noelle’s Story: “I felt relieved I wasn’t alone.”

What initially felt like cramps, eventually resulted in blood in Noelle Bhenning’s urine which revealed something she would have never expected: bladder cancer. Now, she undergoes regular cystoscopies to manage her condition but found solace in the BCAN community in being able to share her story to support others. This is her story:

About six months before I saw blood in my urine, I had a particularly bad weekend with painful cramping. I went to urgent care because I thought I had a UTI, which I’d never had before. They did a urine test, and it was negative for bacteria but showed traces of blood. They said to follow up with my primary care doctor if the pain continued but that the trace blood was not a concern. The cramping wasn’t horribly painful so I went on dealing with it hoping eventually it would go away for good.

I was just 38 years old when I discovered visible blood in my urine. Throughout the day, I noticed pink on the toilet paper when I wiped. The urine in the toilet didn’t look bloody but a tad bit concentrated as if I needed to drink more water. I knew I needed to do further investigation. I urinated into a plastic cup and was able to tell right away that there was blood in my urine when it was not diluted by the water in the toilet. I also had one other symptom that I did not attribute to bladder cancer at the time. I kept having intermittent cramping that would last a few hours or a few days. I was blaming my uterus and figured I would eventually get around to scheduling a gynecology appointment. I assumed it was likely related to perimenopause and brushed it off.

The night I discovered the blood in my urine, I went to the ER to get it checked as I found it quite disconcerting. The urinalysis showed a large amount of blood but no bacteria, so a UTI was ruled out. Next, I went in for a CT scan with contrast looking for possible kidney stones. That was also negative. My blood work was unremarkable. The ER provider referred me to a urologist.

Two weeks later, I went to see the urologist who performed an in-office cystoscopy. I found the procedure to be mildly uncomfortable. As the urologist was readying the camera, he said, “I highly doubt we will find anything given your age and lack of risk factors.” Unfortunately, seconds after inserting the camera, we both saw what I could only describe as a wacky inflatable tube arm man-looking creature growing on my bladder wall. After seeing that, he took the scope out and said I could get dressed. He was going to look at my ureters with dye under fluoroscopy, but he told the radiology tech it was no longer needed.

I got dressed and we went to his office. He then told me I would need a trans urethral resection of bladder tumor (TURBT). They would remove what they could of the mass in my bladder and check my ureters as well during the surgery. It was scheduled one week later. The procedure was done under general anesthesia. It was followed by one dose of chemotherapy instilled directly in my bladder immediately after surgery. I woke up with a clamped catheter in place holding the medication in my bladder. The nurse stated that the chemo, Gemcitabine, would need to remain in my bladder for one hour and then she would unclamp the catheter and remove it. A few hours later, I was able to go home awaiting pathology results to find out what exactly we were dealing with.

The recovery was rough for about a day or two. I was tired and groggy from the anesthesia. I had sharp stinging pain for a week when I urinated. Two weeks following the surgery, I had a day of some blood in my urine. I was reassured this was normal and it was the scabs falling off my bladder. When the pathology report returned a few days after surgery, I was told I had something called a PUNLMP (papillary urothelial neoplasm of low malignant potential). I was to follow up in three months for another cystoscopy to check for recurrence.

The time came, and I had the cystoscopy which showed no return of cancer! I was thrilled that this would be a one and done deal. My urologist scheduled me to be seen again in six months for another surveillance cystoscopy. Unfortunately, things took a turn.

Four months later, seven months after my TURBT, I noted the bladder cramping had returned. I reached out to my urologist who said I should come sooner for a cystoscopy. I returned for another in-office cystoscopy. Unfortunately, the cancer was back in the same spot. I was scheduled for another TURBT later that month. They did the same Gemcitabine treatment following surgery. The recovery was better the second time. I had less pain when I peed than previously. The pathology results returned in a few days. This time the cancer had progressed to low grade, non-muscle invasive bladder cancer. My hope for a one and done ordeal was squashed. I was put back on the every three month cystoscopy schedule. The three month cystoscopy following the second TURBT was all clear. I go back soon to get it checked again.

I never thought at 38, now 39 years old, that I would be dealing with cancer with such a high recurrence rate. I did not have any risk factors except my grandfather died of metastatic bladder cancer after smoking unfiltered cigarettes for many years.

I discovered BCAN after googling my diagnosis. I found comfort in reading others’ stories. I felt relieved I wasn’t alone. This led me to wanting to share my story to help others.

I am thankful that as long as I keep up with my cystoscopies, it can be managed. My urologist described the tumors as weeds. They often come back but if we keep plucking them out of the soil, they won’t take over the garden.