The Importance of Telling Your Cancer Story Honestly

With this past April being proclaimed by the White House as National Cancer Prevention and Early Detection Month and with DNA Day on the 25th, it seemed like the perfect time to share my late wife’s hereditary cancer story with the White House. The White House has a “Share Your Story” button on the Cancer Moonshot page and I was going to make sure my wife’s cancer story and how her cancer could have been prevented was shared.

Because hereditary cancers are the most preventable, I thought DNA Day would also be the perfect day to try and get other members of the hereditary cancer community to share their stories. It would be my nonpartisan, grassroots effort to get those affected by hereditary cancer — be it patient, survivor, previvor or caregiver — to speak up. Like cancer itself, each cancer story is unique and needs to be told.

Ever since my wife died of triple-negative breast cancer caused by a BRCA2 mutation and I learned that our daughter also inherited the same mutation, I’ve been sharing my wife’s story, including here at CURE®. However, I have also become a hereditary cancer advocate and a volunteer for several national nonprofits. And in my advocacy, I have heard far too many stories of cancers that could have been prevented but were not because nobody spoke up.

The challenge, of course, was getting the word out on social media. As you might know, social media can be a junk pile of lame positivity memes, pet videos and outright toxic waste. Getting people to look at and act on a serious subject is difficult at best. But I was determined to try anyway, knowing it just might get ignored.

Here's the graphic I shared on social media that got lots of attention.

So, I created a graphic inviting people to share their story and posted it. To my surprise, it actually got some attention. Much more than I ever anticipated. I know quite a few people who shared their stories with Cancer Moonshot and on social media.

And many shared raw, heartbreaking stories, exposing cancer in all its evil ugliness, which I had hoped those sharing their stories would do. Cancer sucks, and the stories need to be honestly told as such. Everyone wants the feel-good survivors’ stories. The pictures at the big cancer conferences that promise the next cure, or the successful cancer walk or gala with numerous smiling participants. But that isn’t an honest story of cancer.

I sincerely hope the powers at the Cancer Moonshot take notice and spur action. I may not have moved the needle much, but it is a start. And I’d like to encourage everyone reading this to share their story with the Cancer Moonshot and elsewhere, no matter what kind of cancer has affected you or your loved ones. And be honest about your story — the good, bad and the ugly. Your story needs to be told!

From what I’ve witnessed, the hope of cancer prevention and early detection is just not going to happen if we keep glossing over the sheer awfulness of cancer. Please speak up.

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