The Residual Paranoia That Bladder Cancer Gave Me
I lost my first husband to bladder cancer in 2014. He was diagnosed metastatic in 2013 after previously being early stage in 2011. After several TURBTs and a partial cystectomy in 2011, we thought the cancer was gone. And then suddenly it was back and it was bad.
The “unlikely” suddenly becomes real
After the treatment cycle in 2011, we relaxed. The cancer had been caught early; the urologist told him he was “very lucky” that he did not need to have his bladder removed; he was also “very lucky” that he didn’t need chemo. I vividly remember at one appointment that the doctor said he had just removed someone else’s bladder that morning. He was telling us about that patient in order to emphasize how lucky my husband was (I have often wondered if that patient is still alive today).
And then the luck ran out
I spent months after my husband’s death (and during his time with metastatic disease) reliving those early appointments, conversations, and test results. As I learned more and more about bladder cancer, I realized the questions I wished I had asked. And I realized how the odds had been in my husband’s favor, but he just got really unlucky. I don’t think the doctors did anything wrong. I just wish I had pressed them more and maybe they would have been more aggressive in some way.
I realized how savvy some patients and caregivers were. They understood nuances about their diagnosis and treatment. I could not answer the same questions about my husband’s bladder cancer (I was the designated researcher for him). I felt sad, defeated, and scared.
I saw the worst of bladder cancer
Many people have a much different and far less severe experience of bladder cancer than we did. We lived the worst of it. The diagnosis was bad, the cancer did not respond to treatment, and the treatment options in late 2013 were far more limited than they are today.
His pain was difficult to manage
And worst of all, Ahmad suffered. He had a lot of pain. The pain was hard to manage and constantly evolving. When it became apparent that he was not likely to survive, I realized that death really wasn’t the scariest part. It was the getting there, the suffering.
I became terrified of cancer, any cancer
I would estimate that for the roughly two years after he died, I lived in fear of cancer. I had a friend who had a normal mammogram but then six months later had invasive breast cancer. That terrified me.
I reviewed some of my own medical records and realized I’d had trace blood in my urine several times over the course of a year. My primary care doctor understood the anxiety that caused me, given the loss of my husband to bladder cancer. She granted my request to see a urologist and have a cystoscopy. It was normal and there were no problems. But I couldn’t relax until I had confirmed that via the test.
I did not want to take a conservative approach to my health
And finally, I developed ovarian cysts that I was told were “most likely” not cancerous. But no one could tell me for certain. They caused me periodic pain. The recommended course of conservative action was to wait and watch. The aggressive course was to remove them either via a limited or full hysterectomy. I opted for the full hysterectomy and I opted for it quickly. Ovarian cancer is very difficult to detect. I simply couldn’t tolerate the risk or the worry after the bladder cancer experience.
I’m not as scared but the fear is still with me
These days, I’m not quite as scared, but I am far more vigilant than I used to be. I follow up with my doctor on aches and pains. I research (probably too much) likely as well as more remote causes so I can ask intelligent questions and consider all possibilities. And I follow through with whatever cancer screenings for which I am due.
I do not fear dying someday. However, I do fear suffering from cancer – or anything else – and rightly or wrongly, I feel vigilance may help prevent that. If nothing else, it gives me a sense of control.
How are you raising bladder cancer awareness this month?