From ‘Living to Die’ to ‘Dying to Live,’ Colon Cancer Survivor Shares Her Journey to Patient Advocacy

Health writer
Trish outside her senator, Barbara Mikulski’s, office, during an advocacy day on Capitol Hill.
Trish Lannon

Every year, Trish A. Lannon gathers her blue colorectal cancer awareness gear, packs her bags, and heads to Washington, D.C. to advocate for her fellow colorectal cancer survivors. The Maryland native has been visiting her representatives on Capitol Hill for six years, and throughout that time, she’s advocated with a wide group of people from her state. Some have returned. Others, claimed by cancer, have not.

She returns every year, she says, to make a real difference for herself and others who have traveled the tough road of cancer.

Here’s her story.

HealthCentral (HC): Please tell us about your cancer experience.

Trish: My journey with cancer began in March 2007, when I ended up in the emergency room surrounded by nurses and doctors who were telling me they were surprised I had not had a heart attack because I was missing two thirds of my blood volume. At the time, I had convinced myself that there was something wrong with my appendix, but it quickly became apparent that there was something much more serious going on.

After five blood transfusions over a 24-hour time period, I was wheeled into the operating room where they found a cancerous tumor in my ascending colon. Surgeons removed my ascending colon, my right fallopian tube and ovary, and 15 lymph nodes — eight of which turned out to be positive. My diagnosis? At the age of 39, I had stage 3C colon cancer. Trouble had hit me from behind… literally.

I was put on Folfox4 [5-Fluorouracil] as my chemo regime and due to my struggling blood numbers, it took me eight months to complete six months worth of chemo. I was determined not to let chemo get the better of me and I went to work every single day during treatment. Work kept my mind busy — I am an assistant principal in an elementary school, so being around all the children helped lift my spirits. I needed my life to be as close to normal as possible for myself and for my family. Going to work made me feel strong. I felt that if I could continue my life as it was before my diagnosis, it meant that I would be OK and beat it. I did not want anyone’s pity. I did not want people looking at me and only seeing a victim.

When I came home from the hospital I was so lost. Here I was, not the typical victim of colon cancer. I was a woman and I was 39 years old! Everything I searched for about colon cancer referred to men or people over the age of 50. When I tried to find a support group, the nearest one was two hours away and mostly consisted of older men. I had to find something, and I needed questions answered. I needed to feel like I wasn’t alone in this crazy journey!

After searching on the internet, I found a great online support group for people under the age of 50 who are battling colorectal cancer. The Colon Club became my rock and my support system, and I finally began to feel like I was not alone! Having this amazing support group helped me to fully understand what was going on with my body and allowed me to be a better advocate for myself. I became a stronger person and was no longer embarrassed to talk about my colon. Instead, I began to talk very openly about my experience and encouraging others to get screened early.

As part of my desire to educate others, I applied to be a model in a calendar that educates people about colorectal cancer and how it can affect women as well as men and those under the age of 50. The Colon Club puts together this wonderful calendar they call The Colondar every year. I never thought in my wildest dreams that I would be picked, but one day in February of 2008 I got the call that I had been selected for the 2009 Colondar.

Being Miss March for the calendar was such an honor and it opened so many doors for me. I have been interviewed for newspapers, TV, my college alumni magazine [Towson University's Towson Magazine], and my sorority [Alpha Gamma Delta] alumni magazine. I have been speaking up about the need for early detection and getting the word out about being your own advocate with your doctor about signs and symptoms. If I had to go through colon cancer, I needed to have a purpose — and mine is to educate everyone about colon cancer and to make them understand that they don’t have to be afraid to talk about their butt!

I had been NED [no evidence of disease] for 16 months when I got the call that I had breast cancer — specifically ductal carcinoma in situ (DCIS) stage 0 grade 3. Trouble was now hitting me from the front. I was assured it was not my colon cancer coming back and spreading, but a totally separate cancer.

After I fell apart initially, I picked myself up and got to fighting. Due to the amount of areas in my left breast that had linear calcifications, my surgeon told me I would have to have a mastectomy of my left breast. I then met with my oncologist who laid out all of the statistics for me, which led me to make the decision to have a double mastectomy. I did not want to find myself in this situation again five or 10 years from now. I had a lot of people who were shocked by my decision to remove my right breast, which was healthy, but it is my body, my fight. The double mastectomy was my “big bat,” and I was going to fight back and win!

In May of 2009, I had a double mastectomy and began the reconstruction process. My surgeon placed tissue expanders under my chest muscles that she filled every week until I was back to the size I was before all of this happened. August of 2009, I had another surgery to get breast implants, followed by two more surgeries after that to complete the reconstruction process. Since I was stage 0 and my sentinel nodes came back clean, I thankfully did not need chemo.

HC: How did you become involved in patient advocacy?

Trish: When I was invited to the retreat and photoshoot by The Colon Club, I gained an enormous amount of strength from that trip. I went there living to die and returned dying to live. The experience was so intense that I knew I had to find my advocacy voice and tell my story. I did not want anyone to have to go through what I, or my family, had gone through. I immediately talked to the president of The Colon Club at that time, Molly McMaster, and asked how could I help. She then had me working as a moderator on their online support group called Colon Talk. I did that for three years, as well as, I worked very hard to get my story out there and was featured in several national magazines and newspapers, as well I was on the news. My role at The Colon Club grew over the last 10 years and last April, I was named the president of The Colon Club. While my full-time job is being an elementary school assistant principal, I spend my free time running a 100 percent volunteer-run non-profit. And I wouldn’t have it any other way.

I am also the secretary of the Grassroots Advocacy Committee for Fight CRC and have attended their Call-on Congress every year for the last six years advocating for colorectal cancer issues on Capitol Hill.

From ‘Living to Die’ to ‘Dying to Live,’ Colon Cancer Survivor Shares Her Journey to Patient Advocacy-Trish Lannon-2
Trish takes the Capitol with help from a friend.
Trish Lannon

HC: Why should patients attend an advocacy day or even advocate alone in their state capitol or Capitol Hill?

Trish: I think that everyone needs to understand that EVERY voice matters. I don’t think people believe that anymore when it comes to our government. If you attend an advocacy day, either locally or on Capitol Hill, you will see first-hand how things work and what a difference sharing your story can make. I have met with a representative or senator’s office knowing going in that they have not signed on to a bill we want them to support. It is a hard thing to do, but you never know the power of a story until you share it. It is such an amazing feeling when you get a response from their office after your advocacy day saying that they are going to sign on. If you want to see change, you need to be a part of the change and raise your voice!

HC: How can cancer patients become involved in advocacy on Capitol Hill?

Trish: They should reach out to a national organization that participates in them. They are always looking for volunteers. In my case, for colorectal cancer that organization is Fight CRC. These organizations typically have the information about how to sign up for these experiences on their websites.

HC: What’s been the toughest thing about advocating as a cancer patient on Capitol Hill? The best thing?

Trish: The toughest is coming back year after year and still advocating for the same exact thing you were the year before that. Change takes time. Remember that School House Rock video “I’m Just a Bill” that used to play during Saturday morning cartoons? It really explains in layman’s terms how long something can take to actually become a bill. You have to be willing to understand that this process is a marathon and not a sprint.

The best thing about the experience is working closely with some amazing survivors and caregivers, getting to listen to their stories and work with them as a team to help move something forward. I am reminded every year how lucky I am to still be alive when I hear their stories and meet the families of those who have lost someone.

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