Twenty-four years ago, Vanessa Ghigliotty was 28 years old and had just graduated college.
She was a young mom. She was planning to study for her LSATs. She was going to be a lawyer. She had dreams, plans, a future mapped out in her mind.
Then she was diagnosed with stage 4 colon cancer.
“Cancer throws you this big wrench into your plans,” she says, “and everything kind of gets disarrayed and discombobulated.”
But here’s what makes Vanessa’s story extraordinary: it didn’t stay disarrayed. She walked into her first cancer support group to find a room full of wealthy people in their 60s and 70s, getting treatment before retirement. She was a baby by comparison, and she was completely alone.
At Memorial Sloan Kettering, she was surrounded by generational wealth. By life experience. By people who had already lived their lives. And she hadn’t even started hers.
“Everything that could go wrong when I was diagnosed with cancer did,” she recalls. “Every kind of setback that you get in your treatment, I got it. Every side effect, everything that never happens. I was the one in a million girl at MSK.”
But instead of breaking her, that one-in-a-million experience gave her clarity: I don’t want people to have to go through what I went through.
The Dark Ages of Colorectal Cancer: Before Young Adult Advocacy Existed
When Vanessa was diagnosed, colorectal cancer was considered an old man’s disease. There were no young adult support groups. The American Cancer Society had programs for breast cancer and prostate cancer, but when she looked for colorectal cancer resources for people her age, there was nothing.
The closest person in age to her in any support group was 45. And even then, they didn’t connect—because in those days, different cancers stayed siloed. Breast cancer patients didn’t associate with colon cancer patients. And young adult cancer patients didn’t exist as a category.
“I had no one to go to. I had no one to find support to advocate,” Vanessa says. “There are so many things in your journey when you’re sick that you don’t know how to handle that you learn from your peers.”
So for years, she learned alone. She navigated a fragmented medical system by herself. She figured out how to survive a disease that nobody her age was supposed to have.
But eventually, she found the Colon Cancer Alliance—a tiny organization out of Ocala, Florida, with a staff of maybe ten people. There was one person there, Jeannie Hansen-Moore, who changed everything: she was a patient navigator, and she understood that cancer affected not just patients, but caregivers too.
“Everything in their philosophy and everything they did matched up with what I was feeling and what I wanted,” Vanessa recalls.
And then came the moment that would define her advocacy journey.
The Stupid Cancer Moment: When She Found Her People
Vanessa was at a walk in New York City, by the water, for Memorial Sloan Kettering. It was gorgeous. She was with her ex-husband and her mom.
A young man approached her with a survey. He was asking about young cancer patients.
“I flipped,” Vanessa remembers. “I was like, ‘Oh my God, young people, what? Yes.’ And I’m like, ‘I could tell you a million things.’ And my ex-husband was like, ‘You have to calm down.’ And I was like, ‘I can’t. I have been waiting for this. Hello. I’ve been talking about young onset cancer and everyone’s telling me it’s not a problem. You have no idea what you’re talking about.’”
That young man was Matthew Zachary, founder of Stupid Cancer.
He invited her to their first meetup, and when she walked in, everything changed.
“Everybody looked like me. Everybody looked like me,” she says, her voice filled with emotion even now, decades later.
She walked into that room and saw people her age. People facing cancer at a life stage when nobody expected it. People who understood what it meant to have your future stolen from you at 28.
“I realized I need to meet people. I’m not a wallflower. I’m a doer,” she recalls. “I walked up to the first person, and it was Matthew Zachary, and we just bonded.”
That moment—walking into a room full of people her own age, all fighting the same disease, all facing the same isolation she’d endured—became the catalyst for everything that came next.
From Anger to Action: How Advocacy Actually Works
Vanessa’s definition of advocacy has evolved dramatically over 24 years.
When she started, she thought advocacy meant being loud and strong. Angry. You must hear me. This is going to be an epidemic with young people.
She was right, colorectal cancer was shifting toward younger populations. She could see it coming. She went to conferences. She watched politicians’ responses. She gathered data. And she was furious about what she was learning.
“Anger does not get you anywhere,” she says now, with the wisdom of someone who’s spent two decades learning this lesson. “Anger gets doors closed for you.”
What actually moves systems isn’t rage. It’s relationships. Consistency. Showing up, again and again, with the same message and the same people beside you.
It’s the slow wheel that keeps turning.
“Here we are 24 years later and the screening age is lowered to 45,” she points out. “And what I’m hoping is that maybe another 10 years, another five to 10 years, we can get it lower to 40.”
That’s not a headline victory. That’s not a dramatic policy reversal. That’s the slow, grinding work of advocacy—year after year, conference after conference, conversation after conversation, watching the needle move incrementally toward justice.
“The screening age is lowered to 45. We got all the insurances to come along—not only public insurance, but private insurance too. I mean, this is huge. And that’s the difference in advocacy now is that it’s that slow wheel that just keeps going and you keep going and you have other people gathered around you with the same purpose and unite in one voice.”
The Role of Community: Why Finding Your People Matters
Vanessa is adamant about something: not everyone is an organizer. Not everyone is loud or outgoing or assertive.
“Not everyone is outgoing. Not everyone is assertive,” she says. “Not everyone knows how to take the chaos of cancer and the chaos that cancer brings into your life and build something from it.”
That’s why she emphasizes finding your place, not forcing yourself into someone else’s vision.
She found hers in the Colorectal Cancer Alliance, alongside people like Jennifer Butler (then Jen Beckman), who shared her doer energy. They weren’t just talkers. They were people who, mid-conversation, were already on their phones making things happen.
“When I find people who are that way like me, it’s like I have goosebumps,” Vanessa laughs. “Because I know together we can help people who don’t know how to help themselves because not everybody does.”
But here’s the critical part: she acknowledges that not everyone is going to fit into an organization. And that’s okay.
“Every single organization brings something different to the table,” she explains. “You have to sit there and say, where do I fit in? Where do I feel comfortable and what feels like home to me?”
And if the answer is nowhere? You can still be an advocate.
The Power of Social Media Advocacy: You Don’t Need an Organization
This is something Vanessa wishes more people understood: you don’t have to join a nonprofit to be an advocate.
“If they’re not a joiner, if they don’t gel with an org, what they can do is put their story out there on social media,” she says. “You put little tidbits. If you find an article relating to somebody just being diagnosed with colorectal cancer, you retweet or repost that article along with a snippet of your story that relates to that article. And then do hashtags.”
Most people don’t understand the power of hashtags. They don’t realize how far a story can travel when it’s paired with the right tags, the right article, the right moment.
“There’s a desperate need to get the messages that we all have out to the general public, not just amongst ourselves or the medical community,” Vanessa emphasizes. “We need to get out more to the general public and more to the general practitioners who don’t go to ASCO, who don’t go to AACR.”
Rural doctors. Busy general practitioners. Overworked clinicians who never see young people with colorectal cancer because they’re not looking for it.
Those doctors need to hear from you. Not from an organization. From you. A real person. A survivor. Sharing your real story.
“People who don’t gel with organizations, you have so much power to do that just from your own home,” Vanessa says. “We all have that power to do that. It’s amazing.”
The Helper Learning to Ask for Help
After 24 years of showing up for others, Vanessa recently learned something about herself: she didn’t know how to ask for help.
At Cologuard Classic (a Champions Tour golf tournament and major colorectal cancer conference), she had a Crohn’s attack. She got really sick. Her instinct was to hide away in her room. To suffer alone, like she’d always done.
But this time, she did something different. She told her close friends.
“And I can’t tell you how they came through for me. I can’t even explain how they surrounded me and protected me and made sure I was okay,” she recalls, her voice catching slightly. “And that was the first time I ever asked for help. And it was beautiful to know that I got the help that I always give.”
It took 21 years of advocacy for the helper to learn how to be helped.
The Three Asks: If Resources Were Unlimited
If money, time, and institutional gatekeeping were off the table, Vanessa would change three things, all rooted in her experience as a young woman in a disease defined by age.
First: A law protecting young people from diagnostic delays.
General practitioners are the biggest gatekeepers, and they don’t believe young people can have colon cancer. A 19-year-old comes in bleeding from the rectum, and the doctor assumes hemorrhoid. A digital exam doesn’t reveal anything (because hemorrhoids are small), and the doctor sends the patient home.
“If a patient is literally 19 years old and they’re bleeding from the rectum, don’t assume that it’s a hemorrhoid,” Vanessa pleads. “Please, please send younger people for diagnostic.”
She would make it law that doctors understand the difference between screening (looking for disease in healthy people) and diagnostic (investigating symptoms). And she would mandate that a young person with symptoms gets the diagnostic they need—not assumptions, not wait-and-see, but actual investigation.
Second: Young adult cancer clinics at every major cancer center.
Dana Farber created a separate young adult cancer clinic. Vanessa wants every major cancer center to do the same.
“I fought very hard to be this age, to be AARP. And I’m proud of it. I love it. I’m in a different place in my life, but I will never forget the struggle I had as a young cancer patient,” she says. “There should be a separate protocol and a separate program for young adults at every single cancer institution, clinic, hospital.”
Young people need different things than older people. They need fertility preservation conversations. They need discussion of how cancer will affect their careers, their relationships, their identity as young adults. They need peers. They need a separate space that understands their unique needs.
Third: Transportation assistance for cancer care.
This one is less visible but potentially most impactful: patients can’t get to their treatments, tests, and procedures because they don’t have transportation.
“A patient navigator, I can’t tell you how many times this happens,” Vanessa says. “If you are going in for a colonoscopy, you need to take off two days of work because of prep and the day of the test. You can’t drive yourself there and you can’t drive yourself home. So if you don’t have a ride, guess what’s going to happen? You’re not going to go get your colonoscopy.”
A transportation program wouldn’t just be nice, it would save lives. It would make preventative care actually accessible, not just theoretically available.
24 Years Later: What It Means to Earn Your Seat
Vanessa makes a point that younger advocates need to hear:
“I’m a 24-year survivor, that’s 22 years that I’m an advocate. And 22 years later when big decisions are made, I’m considered and I’m spoken to. Where I was dismissed, I earned that. I earned that seat.”
You don’t start with influence. You earn it. Through consistency. Through showing up. Through building relationships. Through decades of doing the work when nobody was watching.
“If I’m doing something and I said, ‘Oh, we should do X, Y, and Z,’ while we’re speaking, I’m on the phone,” she describes herself. “I’m looking at you and looking at my phone and I’ll say, ‘Oh, this place has that, we could utilize this.’”
That’s what earned her seat. Not anger. Not volume. Consistent, visible action.
Connect With Vanessa
If you want to reach Vanessa:
Google her name: Vanessa Ghigliotty — everything comes up, including social media handles and stories
Patient Navigation: If you need help navigating the medical system, she’s there
Support and Connection: If you need someone to talk to, or help finding support groups (online, in-person, or helplines)
GI Cancers Alliance: gicancersalliance.org — Vanessa recently joined and can help connect you to member organizations across different cancer types
Final Thoughts
Vanessa Ghigliotty survived stage 4 colorectal cancer in 1999, when she was the only young person in every room she entered.
Twenty-four years later, she’s helped transform colorectal cancer from an “old man’s disease” to a disease we screen for at 45 (and hopefully soon at 40). She’s helped ensure that young adults with cancer have spaces where they belong. She’s mentored countless advocates and navigated countless patients through a system that still doesn’t always believe in them.
But her greatest lesson might be the simplest one: advocacy isn’t about being loud or angry or heroic. It’s about consistency. It’s about finding your people. It’s about showing up, again and again, with the same message and the same commitment.
“The slow wheel that just keeps going,” she calls it.
It took 24 years to lower screening ages. It took 24 years to earn her seat at the table. It took 21 years before she learned to ask for help.
But it’s working.
And if you’re reading this, thinking you don’t have what it takes to be an advocate—you do. You just have to start somewhere. A social media post. A retweet. A story. A conversation.
That’s how movements start. That’s how wheels turn. Slowly. Then all at once.
Are you a young adult facing cancer? Visit GI Cancers Alliance to find support. Are you a survivor isolated from your diagnosis? Start sharing your story on social media. One post at a time, one hashtag at a time, you might be the person someone else has been waiting to find.
