May is Bladder Cancer Awareness Month!

May is Bladder Cancer Awareness Month! This means it’s a great time to talk up bladder cancer to everyone you know! Despite being the sixth most common cancer, many people have never heard of it.

I had never heard of it before my first husband was diagnosed.

The Bladder Cancer Advocacy Network (BCAN), the first and only nonprofit dedicated solely to raising awareness and increasing funding for bladder cancer research, sponsors walks in cities all over the country to raise money and awareness.

Bladder cancer walks to raise awareness

I organized and led the walk in San Francisco. You can always see if there’s a walk near you here. I also requested that my local Board of Supervisors (City Council) representative sponsor a resolution recognizing May as Bladder Cancer Awareness Month in San Francisco. Similar resolutions have been passed in prior years in the U.S. Senate and in various states. You can ask your local and state elected officials to sponsor a resolution, too. They are often glad to do it.

I didn’t know anything about cancer or the cancer world until we faced that bladder cancer diagnosis. I didn’t really understand the purpose of so-called awareness campaigns and various events related to specific diseases. I wish it weren’t so but the reality in America is that the vocal advocates get the funding.

Demanding funding

This is how HIV/AIDS patients got research funded: they demanded it. It’s also how breast cancer went from a taboo-to-discuss disease to one in which it seems numerous products have pink ribbons and we are asked on the credit card kiosk at the grocery or drug store if we want to donate to breast cancer research.

Bladder cancer is far from being a “household disease,” that is, one that everybody knows. And it is also grossly underfunded compared to other cancers. It is expected to be the sixth most common cancer in 2019

And yet, the National Cancer Institute’s (NCI) portfolio for bladder cancer research totaled just $36 million in FY 2017 (the most recent year for which data is available). The fifth-most-common cancer was melanoma and NCI-funded research about it totaled $153 million. Both are dwarfed by the funding for breast cancer ($545 million) and lung cancer ($321 million).

You don't choose the cancer you get

I understand that there are more cases of these other kinds of cancers so, in some respect, it makes sense that there is more funding for them, too. But a patient doesn’t choose which kind of cancer he or she gets. So as a patient, you don’t care if there are many or few cases of your kind of cancer. But you do care that there are treatment options available.

Bladder cancer is just starting, in part due to BCAN’s funding and awareness campaigns, to become a cancer with a variety of treatment options for metastatic disease.

A more robust landscape of treatment options in the future

A bladder cancer medical oncologist told me last year that bladder cancer research and treatments are at about the same point that prostate cancer and treatments were in the 1990s. I imagine a far more robust landscape of treatment options in the future, both for early-stage patients and metastatic patients. BCG, while curative for many early-stage patients, can cause side effects that are very difficult to tolerate.

And historically, the only more aggressive treatment that patients were offered was to remove their bladder. Not an ideal option and not a great menu of choices. Researchers are exploring bladder preservation and the vexing question of whose disease is likely to progress and whose isn’t.

The landscape for metastatic disease has opened up with multiple immunotherapy drugs and the first targeted therapy for bladder cancer recently approved by the F.D.A. These aren’t for everyone and they don’t work for everyone. But it’s an improvement upon having only platinum-based chemotherapy as an option.

Talk about bladder cancer!

It is through talking about bladder cancer—in telling our stories, in lobbying public officials, and in participating in events—that bladder cancer will become a widely recognized disease and one with many treatment options.