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.

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.

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.

This meant my husband now had metastatic disease.

How did we get here?

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.

A desperate quest

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The BladderCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

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  • Elizabeth
    10 months ago

    I am so sorry for your loss. In general I have had faith in most doctors, but then came bladder cancer. My husband had a benign tumor over 10 years ago, it was removed and he was fine until last August. This tumor was malignant and fast growing, Full torso CT scans showed it was contained in his bladder and a cystectomy was done to remove the tumor, radiation and chemo followed. On the first follow up, six weeks after the chemo and radiation, we saw the dead tissue of the older site and surrounding it an even larger ring of the cancer. Another cystectomy, this time instilling the chemo Mutamycin into his bladder for 2 hours. Done and home we came.

    My husband still wasn’t eating much after the first chemo and radiation, he quit eating after this. Less than 5 days after his last cystectomy, he was very confused and mostly unresponsive. I called 911, this hospitalization was when they found the tumors throughout his lungs and kidneys. He refused further treatment. They got him walking and with promises to hospital staff and me that he would eat, I brought him home. He died in four days, at home where he wanted to be. I was helping him to the bathroom when he looked at me and said, “I’m dying”, sat back in the wheelchair and died. I thank the Powers That Be it was quick, fast and he didn’t linger.

    Now comes the hard part, dealing with the day-to-day, work and sorting through our life together, deciding what stays and what goes. I cycle through grief, anger and love each day, it’s wearing on the body and mind. Luckily I have supportive co-workers and bosses. Next Saturday I’m going to the baby shower for my newest Godchild, that will be my favorite moment for that day.

  • Sarah Wallin moderator
    9 months ago

    Elizabeth,

    Thank you for sharing your story here in response to Renata’s.

    I am so sorry to hear about the recent and sudden loss of your dear husband and the hard part you are dealing with now. Please know that the community including myself and Renata are here for you. You are justified in feeling the way that you do as you process this difficult loss.

    I am grateful to hear that you were able to be with your husband in the comfort of your own home during his final moments. I’m also glad that you have supportive co-workers and bosses at work as well as a baby shower that you are looking forward to on Saturday. Your ability to reflect on the positives in your life during this extremely challenging situation speaks volumes about your character.

    I am wishing you some feelings of comfort during this tough time.

    Sending hugs your way,
    Sarah (BladderCancer.net Team Member)

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