Let’s Make Sure Bladder Cancer Is No Longer Referred to As “Uncommon”

When my first husband, Ahmad, was diagnosed with bladder cancer (early stage in 2011 and then metastatic in 2013), time and again we heard comments like “oh I’ve never heard of that” or “that must be very rare” or “I didn’t know there was such a thing as bladder cancer.”

The comments resonated with me because they were precisely the same thoughts I had when I first learned of the diagnosis. Even some doctors (non-oncologists/specialists) mentioned how uncommon bladder cancer was.

Even many urologists don’t treat much bladder cancer

I realized through research and conversations that many urologists (outside of NCI-designated institutions) treat far more cases of prostate cancer than bladder cancer. (So, yes, relative to prostate cancer, bladder cancer could be considered rare. According to the American Cancer Society, an estimated 192,000 new cases of prostate cancer are expected in 2020 while an estimated 81,000 new cases of bladder cancer are expected.)

The benefits of NCI-designated institutions

For this reason, I always encourage newly diagnosed patients to seek out a urologist who treats a lot of bladder cancer. These doctors are typically found at the NCI-designated institutions, which will often have a urologic oncology department.

But it’s not uncommon or rare

But those of us in the trenches of bladder cancer for years know that it is not a rare disease. In fact, it is one of the more common cancers. Its ranking varies depending on how you measure. Per the American Cancer Society, it is the fourth most common cancer in men and is expected to be the seventh most common cancer overall in 2020 in the U.S.

It’s frustrating to still hear it referred to as uncommon, rare, or “weird”

One of the recent Oscar winners was a film called “American Factory,” directed by Julia Reichert and Steven Bognar. It won for Best Feature-Length Documentary. I haven’t seen it, but it sounds fascinating. and I very much look forward to seeing it. Julia Reichert caused a mild sensation – and burst of pride among cancer patients – in that she chose not to wear a wig. She is bald due to the effects of chemo she’s received for bladder cancer. I commend her courage and hope that she responds to some kind of treatment.

But I must say I was disheartened at her description of the disease in an interview with Terry Gross on NPR’s “Fresh Air” on February 3. Specifically, what frustrated me was her response when Terry Gross asked if she had lymphoma:

“Well, actually, the cancer I have now is not lymphoma. It’s a weird one. It’s called urothelial. I mean, I’m fine to talk about it a little bit. I was diagnosed with cancer about a year and a half ago now. And I fought it, and it went away. But then it came back in a small spot, and so I’m – I’ve had to fight it again, which, of course, is never good news. It’s actually an incurable cancer. It’s fatal. And I’m very aware of that…”

She goes on to discuss how it has changed her perspective. I so appreciate her speaking publicly about it. And I don’t want to suggest in any way that it is incumbent upon the sickest patients to advocate for, explain, or educate people about the disease.

Those of us who are well enough need to educate others

But I do wish she had called it “bladder cancer” instead of urothelial. And I do wish that she might have distinguished that in her case, it is likely to be fatal, but that doesn’t mean it is a terminal illness for everyone. And I really wish she hadn’t called it “weird.”

Telling our stories

I cut a lot of slack to any cancer patients. They are all in the fight of their lives. But I think it is incumbent upon those of us who are able – the caregivers, the recovered patients, the family and friends – to talk about bladder cancer in a way that demonstrates that it is not rare and it is not necessarily fatal. We do this by telling our own stories to whoever will listen.