What Is the Culture Surrounding Bladder Cancer?

As I became more deeply involved in bladder cancer patient advocacy, I read and heard a lot about the culture surrounding breast cancer. A few decades ago, breast cancer was one of those diseases that wasn’t talked about. There was seemingly a sense of shame or embarrassment associated with it.

Breast cancer awareness has come so far

But how times have changed. Breast cancer is probably the most ubiquitous of the cancers with regard to “awareness” and broad-based support for early detection, research, and treatments. Pink ribbons seemed to explode in the last 10 years or so. They now appear on so many products and on the credit card machine at the drug or grocery store. They seem to be everywhere in October, the official breast cancer awareness month.

The evolving culture around bladder cancer

Let me say that every cancer is cancer and there is no so-called “good” cancer to get. And my intent is not to pit one cancer against another. But rather to consider the evolution of the culture surrounding breast cancer. And to consider the evolving culture around bladder cancer and what it might look like in coming decades.

Cancer below the belt

I have often heard bladder cancer described as a “below the belt” cancer that people are embarrassed to talk about. But wasn’t this the case with breast cancer a few decades ago? And now it has become almost synonymous with corporate do-gooding, donating profits to it, etc.

Breast cancer patients made waves

That change happened because breast cancer patients got vocal and active. And poured money into the cause. The pink ribbon has its detractors, and I know many breast cancer patients (especially metastatic patients) who do not like or support the simplicity it suggests. Nor do they support the “rite of passage” style culture that blossomed around breast cancer: you get it, you have a lumpectomy or mastectomy, you may or may not do some chemo or radiation, you are deemed cured and join the ranks of sister “warriors” who walk in the annual fundraisers.

Let’s be clear: people still die from breast cancer. Many people die annually from it. And so the culture of ribbons and smiling survivors can feel almost insulting to metastatic patients.

Diversity within groups of people with cancer

And from this diversity of experience with the disease has come concepts that could be useful in the culture of any cancer. For example, in the past, metastatic breast cancer patients were discouraged from telling their stories in support groups for all stages. They were told their stories might “scare” less sick patients.

Yes, they might. But where does that leave the sickest patients who also need emotional support? As a result, support groups formed specific to stages of the disease. This is a concept that equally applicable to bladder cancer.

What is the culture around bladder cancer?

And this brings me back to, what is the culture around bladder cancer? What should it be? It is a disease many of us never heard of until it entered our lives – uninvited. Awareness of it has correlated with the rise of online health communities and information.

Sharing stories and learning together

There are far fewer bladder cancer patients than breast cancer patients diagnosed each year. So perhaps the culture could be described as a bit scrappier – a bit more startup than corporate. A small but growing universe of individuals telling their stories, helping each other, and learning together about the successes and failures in evolving treatment options.

I hope that one day as many people will have heard of bladder cancer as know of breast cancer today.