Metastatic Bladder Cancer When We Least Expected It

I lost my first husband to metastatic bladder cancer in 2014. That was after being told in 2011 that he had been “cured.”

We experienced both the best case and worst versions of the disease. That 2011 diagnosis was low grade disease that was Stage Ta (the earliest stage possible). We took it seriously but didn’t worry too much as the urologist seemed confident that it was a manageable condition.

After a partial cystectomy, he was "cured"

BCG was not an option because the cancer was in a diverticulum. The urologist did not think BCG could reach it. So after two concurrent opinions, my husband opted for a partial cystectomy. The doctor deemed him “cured” and we went on with our lives, practically forgetting about bladder cancer.

An inexplicably swollen leg

Nearly two years later, in April 2013, my husband came home from jogging and his leg was inexplicably swollen. No pain, no other symptoms, just an odd swelling. For two weeks, his clinic shuffled him one specialist to another. He had cardiac and lung tests, he had an ultrasound to rule out a blood clot, he saw a sports medicine specialist.

No one suspected cancer.

Getting a CT scan

Finally, one of those doctors ordered a CT scan. It showed a swollen retroperitoneal lymph node (near the spine). This lymph node was compressing a vein in the leg, cutting off blood flow that then caused the leg to swell. The enlarged lymph node was biopsied and confirmed to be bladder cancer.

My husband had metastatic bladder cancer

This meant my husband now had metastatic disease.

While we knew it was serious, it was difficult to get clear answers from the oncologist. I suppose no one, especially those in the business of fixing and curing, want to deliver bad news. But I finally asked directly about the prognosis. That moment in May 2013 made it real and sticks in my mind as the moment everything changed. She said, “months to years, depending on how he responds to chemo.”

Months? He looked healthy and had been jogging two weeks ago. It didn’t seem possible that she could be right.

He lived 11 months.

Metastatic disease snuck up on us

This launched us on a desperate quest to try to save his life. We did not succeed. He died in April 2014, just one year after the swollen leg and less than three years after he was deemed “cured.”

Immunotherapies did not exist then and genomic sequencing was in its infancy. These offer some hope for today’s patients. But too many people still die from bladder cancer. And for too many, metastatic disease sneaks up on them, like it did for us.

We all know we will die someday. But this knowledge is theoretical, it is not internalized, until we or someone close to us receives a terminal diagnosis. It is then that the value of a healthy body—of a functioning liver, of a normal leg, of a healthy bladder—becomes real.

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