It’s a question I get asked almost every time I share my cancer journey and my passion for cancer advocacy.
“Why stay?”
Trevor Maxwell, founder of the Man Up to Cancer online support community and host of the MUTC podcast, asked that question when I was a guest on the show in February.
“People get cancer, get treated, you reach no evidence of disease. At that point, people have a choice: you can hang out in Cancerland and be part of the cancer conversation, be part of the community, become an advocate. There’s ways to stay involved. And there are others who say ‘I can’t run to the door fast enough to get out of Cancerland. I don’t want to deal with it, I don’t want to be around it.’ And both of those tracks are totally reasonable, and we support whatever cancer patients decide to do with their survivorship.”
During that interview, I shared a lot about being on staff with the American Cancer Society and the American Cancer Society Cancer Action Network, and how I wanted to use my journey to demystify and be completely forthright about a disease people feared. I wanted then, as I do now, to offer hope to people who have been and continue to be diagnosed with colorectal cancer in the years since I was diagnosed 10 years ago.
Today, I also believe it’s a moral imperative.
There are two reasons I believe this. First, millions of cancer screenings were cancelled or not even scheduled during the height of the coronavirus pandemic. Second, colorectal cancer, already the second leading cancer killer of men and women, will be the number one cancer killer of people between the ages of 20 and 49 by 2030.
A study initiated by the American College of Surgeons Cancer Programs and the American Cancer Society found that screening test volumes dropped significantly during the pandemic from pre-pandemic levels. There was an 80.6 percent drop in colorectal cancer screenings long. Anyone who missed a screening during the pandemic for colorectal cancer, breast cancer, cervical cancer or lung cancer should get one scheduled as soon as possible. The National Institutes of Health estimates 10,000 additional deaths from cancer over the next decade because of this drop in cancer screenings.
It’s the second part of that moral imperative that alarms me most. Colorectal cancer is skewing younger. Anecdotally, I know that from my work in the cancer space and from my own experience. I was a young onset cancer patient when I was diagnosed at age 43. I’ve known of boys as young as age 13 and 4 dying of stage 4 colorectal cancer. Kids should be outside playing with their friends, not making decisions about whether or not to continue brutal cancer treatments. But it’s happening.
On the upside, the American Cancer Society and the U.S. Preventive Services Task Force, both of which set cancer screenings guidelines, have lowered the recommended screening age for colonoscopy to 45 from the previous recommendation of age 50. I don’t think it will be long before the screening age recommendation will be lowered again. If we’re going to do anything to stop CRC from killing young people, we’re going to have to get them screened sooner.
Screening is part of it. So is research. As an advocate for ACS CAN, I ask my senators and my representative to support increased funding for federal cancer research and prevention programs every year. Working with Fight CRC, the request is even more pointed. This year, we asked for funding to stand up a CRC research program as part of the U.S. Department of Defense’s Congressionally Directed Medical Research Program. The DoD does millions of dollars of cancer research because, just like the general population, cancer affects our armed forces. But there isn’t a CRC research program. Since 20-49 hits at the heart of the population most likely to be in service to their country, such a research program seems beyond necessary.
We also want the National Cancer Institute to develop a strategic action plan for CRC. Breast cancer research gets tons of federal, corporate and individual support. October is pink as hell, right? March is Colorectal Cancer Awareness Month. While support for CRC Awareness is growing, we have a long way to go. I’m not asking to diminish anything being done in the breast cancer space. Rather, we need to do more to make people aware of CRC and we need to support research funding, early detection and prevention programs, etc., to make sure everyone who needs a screening can get one.
There are a couple of other issues that are important to me: healthy eating and active living, and health equity. These are issues that need to be resolved in some way, I believe, in order to achieve any significant reduction in CRC diagnosis and death.
I am passionate about Healthy Eating and Active Living. I have talked about HEAL on the lecture circuit, and I tend to live it out loud on my Instagram feed. My feed is chock full of workout and post-workout photos, foods that I’m eating, etc. I may not have a Men’s Health cover body, and I’ll likely never get one, but I exercise almost daily and I watch what I eat. It’s a work in progress since I gained during cancer treatment the 100 pounds I lost in the two years before my diagnosis. I’m still a giant and larger than I would like to be. I’m working on a body positivity mindset, but I know I could be doing better. We all could. Getting up and moving and eating better are two things we can all do to reduce our risk of cancer across the board. And, quite honestly, HEAL is a lot of fun to talk about.
Finally, and certainly not in order of importance, is the need for health equity. ACS CAN is dong yeoman’s work in this area. We need to ensure that where you live does not determine if you live. That means everyone should have access to cancer screenings, education, treatment, clinical trials and survivorship care without regard to skin color, race, religion, creed, sexual identity or any factors that “other” us. Cancer isn’t fair to anyone who gets a diagnosis, but black and brown people shouldn’t be more likely to die from cancer because they can’t get to treatment or because they get diagnosed at a later stage when the disease is more costly to treat. Health insurance coverage needs to be accessible and available for everyone.
I assure you, I will continue to do my part and continue to advocate on behalf of ACS CAN, Fight CRC, Colorectal Cancer Alliance, Colon Cancer Coalition and the National Coalition for Cancer Survivorship. As long as I have a story to tell and for as long as I draw breath, I want to fight to improve the lives of cancer patients, survivors and their families. More importantly, I want fewer people to hear the words, “You have cancer,” which strike fear into the hearts of everyone who hears them.
You, dear reader, can join me in the fight. Whether you join ACS CAN, support any of the organizations listed in the previous paragraph, or support organizations specific to your cancer site, adding your voice is more important than ever.
I know it’s fashionably cynical to think your voice doesn’t matter but I can attest, along with thousands of volunteers from across the country, that every voice matters. Our members of Congress count every letter, every phone call, every district and DC office visit. They may not always vote the way we want them to and watching how the sausage gets made can at times be very painful. Still, for every hope of passing a bill that gets dashed because your senator’s committee is holding it up, there is celebration for a decade’s worth of advocacy that finally pushes something important across the finish line.
Being an advocate, though, that’s the relatively easy part. If you have a story to tell, someone needs to here it. I hope you will find a way to share it. It’s more important than you may think.
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