Primary Adenocarcinoma of the Bladder

Hi, I am submitting this story for my hubby, Paul who was diagnosed in the fall of 2021 with Primary urinary Bladder Adenocarcinoma (PBA). He was 48 yrs old at the time of diagnosis.

Fortunately, my husband has always been in tune with his body. He is active and healthy and positive. It came as a huge surprise to us both when the worst was suspected.

Symptoms and Scans

His initial symptoms started around May 2021. He noticed that he was peeing more at night. He had pain and pressure when he sat for any amount of time. He noticed other things going on that seemed out of the norm.

He schedule an appt with a urologist, but it was so far out like 2 months away he decided that the quickest way in was to go the Urgent Care where he would be seen sooner. At the urgent care, they did a urine sample to see if he had a bladder infection, which was negative. But they did find blood in his urine. That got him into the urologist's office within a week.

The urologist ordered CT scan and cystoscopy. The CT scan showed 2 tumors, one in the bladder and the other in the prostate. These initial scans also revealed a missing left kidney. The tumor was on the side of the bladder with the missing kidney.

Waiting for a diagnosis

Later during the cystoscopy, the ugly tumor could be clearly seen. Paul described it as a red lesion with white hairy tentacles floating in fluid. He said it looked dangerous. The urologist didn’t flinch but the attending nurse had a surprised look in her eyes. My hubby sensed it was serious.

There was little we could do as we waited to get a clear diagnosis so we immediately went to work on a very clean diet and high doses of melatonin, which has been shown to keep cancer from metastasizing. We also started researching cancer survivors with high grade cancers. Cancer is so complex it can’t be fought with just one modality, so we researched what others did.

Treatment options

After the cystoscopy, the urologist scheduled a procedure to remove the tumor. The tumor was sent to pathology and was studied by 2 hospitals, the latter being MSK in NYC. The latter pathology report came back as Primary Adenocarcinoma of the bladder and was staged at around a T2 with slight invasion of the muscle wall. Its a rare aggressive cancer that consists of 1 percent of all BC. The resections, Turp and Thurbt was done in November 2021. Once we had the diagnosis, thru MSK, surgery was scheduled for a radical cystoprostatectomy with pelvic lymph node dissection.

Before the surgery though, a number of test had to be done. They did scans of his chest. They did a colonoscopy to make sure there was none in the colon indicating metastasis. One by one the boxes were being checked as we got closer to the surgery date of January 4th, 2022.

We are convinced that years of low-grade inflammation to the bladder because of having a ureter without its kidney could have changed the affected area over time to cancer developing. We were very fortunate that the lymph nodes were all negative with cancer contained in the bladder. My hubby continues to take high-dose melatonin, and he is also on the Jane Mclelland protocol since this aggressive cancer is not responsive to chemo or radiation.

Staying positive

He is 1 year out with clean scans.

This experience was tough, but helped us to be the best versions of ourselves and to appreciate life and the little things even more, especially each other. We try to keep a positive attitude and not worry about what we can’t control. He had a rough few months after surgery adapting to a Urostomy bag, but now it's become second nature. He lives life to the fullest like he did before even playing sports. He will continue to go for regular checkups as these come up.

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