A Young Woman With No Warning Signs
Allison Rosen was 32 years old, in the best shape of her life, when she noticed something wrong.
She had Crohn’s disease, so she was hyper-aware of her digestive system. She knew her body well. And something felt different—something unusual.
“When I would eat, I would feel like I had food stuck inside me, and eventually I would go to the restroom and eventually it was just so painful that I was like, I can’t ignore this anymore,” she recalls.
She thought it was heartburn or indigestion at first. Her doctor didn’t seem too worried. But Allison knew her body better than anyone, and she trusted that instinct. She kept pushing.
An X-ray suggested a blockage. She was sent home with magnesium citrate, told to wait it out. But the pain didn’t resolve.
Finally, her doctor agreed to a colonoscopy, even though Allison wasn’t due for one for several more months.
The colonoscopy revealed a tumor. And during recovery, the surgeon told her something that stopped her cold: If she had waited a few more months, the tumor would have broken through her colon wall. She might not be here today.
In 2012, at age 32, Allison was diagnosed with early-onset colorectal cancer.
The Double Burden of Youth and Cancer
Allison was working in cancer research at the time, blood cancer specifically. She had education about cancer, medical knowledge most patients don’t possess.
But nothing prepared her for being a patient.
“The doctors take care of all the physical stuff, but the mental aspect of going through cancer at a younger age was huge and hard,” she explains. “I felt very alone. Everyone thought my mom was the patient when we would go to the clinic. My friends that were my age were getting married, having children, and I was going to bed at eight 30 because I didn’t feel great.”
She reached out looking for support. She contacted Imerman Angels, MD Anderson’s Cancer Connection, and other organizations asking if she could be matched with someone, another young adult who understood what she was going through.
She found some support, but it was scattered. There was no dedicated young adult cancer support group at MD Anderson, one of the nation’s premier cancer centers.
So Allison made a decision: If the support she needed didn’t exist, she would help create it.
Advocacy Born From Necessity
Allison didn’t wake up planning to become an advocate. She “fell into advocacy,” as she describes it.
After completing treatment and being declared cancer-free, she wanted to find community. She went to a Get Your Rear in Gear event in Houston (organized by the Colon Cancer Coalition) and brought about 60 friends and family members with her—though she was still recovering and could only walk part of the 5K.
Someone at the event asked her to serve on an adolescent and young adult advisory council. She said yes, partly because she wanted to meet people like her.
Then she was asked to tell her story. She said yes.
Then another opportunity came. And another. Each time, she said yes.
“I never said no,” she laughs. “And so that sort of led me to where I am now involved in so many different amazing organizations.”
Her background in cancer research became an unexpected asset. Thirteen years ago, patient advocates weren’t typically part of research conversations the way they are now. Allison’s unique combination of lived patient experience and research knowledge made her invaluable to organizations working on clinical trials, research protocols, and studies.
Defining Advocacy on Your Own Terms
When asked how she defines advocacy, Allison’s answer is simple but profound:
“It’s using my voice, my story to help others improve care. So advocating for the community and the people that maybe don’t know about anything related to cancer prevention, and then the people that do.”
But there’s something else she emphasizes: You don’t need expertise to be an advocate.
“You don’t have to have the knowledge. I did. But I think it’s really important that the patient experience, caregiver experience, survivor experience are all a part of the conversation related to research,” she says.
This is critical: a lived experience expert—someone who has been through cancer treatment, someone living with cancer, someone caring for a cancer patient—doesn’t need a PhD to contribute meaningfully to research, policy, and care decisions.
The Four Types of Advocacy
Through her 13+ years of advocacy work, Allison has engaged in multiple forms:
1. Community and Patient Support
She helped create the young adult support group at MD Anderson that didn’t exist when she needed it. She still hears from people who found community, built lasting friendships, and found strength in that space.
“I met some of my best friends who are still my best friends through that support group,” she recalls.
2. Policy Advocacy
Allison noticed gaps. One gap: many young cancer patients couldn’t afford fertility preservation treatments before chemotherapy. She got involved in policy work to improve coverage. Another gap: people weren’t getting coverage for screenings and colonoscopies. More policy advocacy.
“Advocacy was where are the gaps and where can I share my story and my experience,” she explains.
3. Storytelling and Awareness
But perhaps her most powerful form of advocacy is simply sharing her story. All of it, not just the inspiring parts.
“My experience was not rainbows and butterflies. There were times that I choose not to remember, but I realized those times need to be shared,” she says.
She’s shared her story about living with an ostomy. She’s talked about the three surgeries needed to make it permanent. She’s opened up about going into sepsis three different times, about four open surgeries, about kidney issues that resulted from her treatment.
“There wasn’t necessarily mistakes, but there was knowledge that I didn’t have that if I had connected with others or if I had known the questions to ask or if I had not had fear, then I would’ve maybe not necessarily made other decisions,” she reflects.
By sharing the difficult parts of her journey, she’s helping others avoid some of the complications she experienced, or at least go into their treatment with realistic expectations.
4. Research Advocacy
“I call everyone in the community that has gone through or is going through it a ‘Lived Experience Expert,’” Allison says. “Because that’s what—after our name, it should be LEE. Lived Experience Expert. I think it should be because yeah, we didn’t get our PhD, but we were experts in our experience.”
As a research advocate, Allison brings the patient perspective to the research table. She reviews protocols, looks at inclusion and exclusion criteria, and asks the questions that researchers in a lab might never consider:
“If you say you have to go and get your blood drawn every single day for two weeks and you don’t live in that city, you can provide that perspective and say, I don’t think that will work because of cost, because of transportation, because of family, because of job.”
The Critical Importance of Being at the Table
One of Allison’s strongest messages is this: Patients, caregivers, and survivors must be involved in research from the very beginning—not as an afterthought.
“If patients, caregivers, and survivors are not at that table during the research process, these decisions are being made for us, not with us,” she emphasizes.
This is a major shift. For decades, researchers conducted studies and made clinical trial decisions without any input from the people who would be affected by them. The results: trials with unrealistic requirements, research that didn’t address patient priorities, and decisions that made perfect sense in a lab but didn’t work in real life.
“Now a lot of times it’s required to have a patient advocate as a part of a grant or when you’re looking into trials,” she notes. “But I think when you are, if you’re interested in becoming a research advocate, you must insist on being a part of the process from the very beginning because sometimes people will be like, ‘Oh, will you write me a letter?’ and you never hear anything again.”
She’s clear: patient advocates should not be a checkbox. They should be a voice. A valued contributor. A gold star, not a thorn.
The Power of Sharing Your Story
Allison’s advice to anyone considering advocacy is powerful and achievable:
“Don’t be shy about sharing your story and don’t think overnight. I think it takes time to figure out what part of advocacy you’re interested in. I think for me, it didn’t happen overnight. I told my story and it just kind of accidentally happened.”
She emphasizes that you don’t need to do something grand or public to make a difference:
“By sharing your story, even simply on social media, you can help one person. And I don’t think people really understand the impact of sharing their story, be it in a newspaper, on a blog, one post could change the trajectory of anyone’s life.”
Whether it’s a one-on-one conversation with a friend, a private message to someone newly diagnosed, a social media post, or a formal speaking engagement—it’s all advocacy. It’s all valuable.
“As long as you’re sharing in some way, if you’re comfortable one-on-one via social media, via your friends and family, you are helping people and you are an advocate,” she says.
The Gift of Second Opinions
A lesson woven throughout Allison’s story: always get second opinions. And third. And fourth.
When she was diagnosed, she consulted with three different surgeons. They all recommended different approaches to surgery.
“Really who you choose can make a huge difference in your life. And if one doctor doesn’t listen to you, go to the next. And if that one doesn’t, find someone that will listen to you because you deserve that,” she advises.
She’s also clear about a boundary: “If a doctor doesn’t respect that you want a second opinion, they’re not a good doctor.”
Knowing Your Body Better Than Anyone
An important thread running through Allison’s story is this: You know your body better than any medical professional.
Even with Crohn’s disease awareness and medical knowledge, she might have doubted herself when her doctor downplayed her symptoms. But she trusted her body’s signals.
“No matter what age you are, if you have a colon, you’re at risk,” she emphasizes. “If you think something doesn’t feel right with your bowel habits, with your eating habits, with any sort of pain, you should talk to your doctor. And that’s really what I tell people, especially younger people, that no matter what age you are, if you have a colon, you’re at risk.”
And critically: if your doctor isn’t listening, find one who will.
The Lived Experience Expert
Perhaps Allison’s most powerful contribution to the advocacy conversation is reframing who gets to be considered an expert.
In medicine and research, expertise is typically conferred through degrees and credentials. But Allison argues, rightfully, that patients, survivors, and caregivers are experts too.
They’re experts in their own experience. They understand the real-world impact of decisions made in labs and conference rooms. They know what’s actually feasible, what’s actually compassionate, what’s actually needed.
“We’ve graduated. Or we’re again graduated, people living with or have gone through. And we deserve as much of a degree of some sort for our experiences,” she declares.
It’s not just semantics. It’s a fundamental recognition that expertise takes many forms, and lived experience is one of the most important.
Find Allison Online
You can connect with Allison on:
Her pages are public, and she welcomes DMs and messages. Whether you need one-on-one advice, want to talk about your journey, or need a connection to the right organization, she’s available. Just search “Allison Rosen Colorectal Cancer”
What Allison Wants You to Know
If you’re recently diagnosed, in treatment, in survivorship, or caring for someone with cancer, know this:
Your story matters. Your experience is valid. Your voice needs to be heard—not just in support groups and patient communities, but in research conversations, policy discussions, and clinical trial design.
You don’t need a medical degree to advocate. You just need to be willing to share what you’ve been through.
And if your doctor doesn’t listen, doesn’t respect your questions, doesn’t take your symptoms seriously—find a new doctor. You deserve better. You deserve a healthcare team that sees you as a partner in your care, not a passive recipient of it.
Most importantly: you are an expert in your own experience. That expertise is valuable. That voice is needed.
To learn more about turning your own health journey into purpose and impact, visit https://frompatienttoadvocate.com where you’ll find resources, stories, and practical guidance for advocates at every stage of their journey.
