The first time I went to the myCancerConnection Cancer Survivorship Conference after being diagnosed with breast cancer, I remember feeling out of place, like I didn't belong there. “Why do these people keep coming back?” I wondered. “What are they celebrating?” I thought it was so odd.
Little did I know that 18 years later, I’d still be attending the conference. And that in between, I’d not only serve as a member of the conference’s planning and steering committees — but also as the chair of one.
What I liked about the first few Cancer Survivorship Conferences
In the early days, I found myself fascinated by the science offered in the general sessions. Those spurred me to start volunteering at the Cancer Survivorship Conference. Soon, I was asked to be on the planning and steering committees. That got me interested in patient advocacy. Now, I represent the patient’s perspective when considering research proposals and grant applications, both on MD Anderson committees and those of other organizations. I also mentor other patient advocates.
We patient advocates play a surprisingly important role, because it’s amazing how often researchers have never met a patient before and are not aware of the challenges we face during treatment. Not all cancer hospitals are like MD Anderson, where researchers are often physicians who work with patients in clinic, too. Some researchers are just off in a lab somewhere, so they don’t think about things like long-term side effects, or how certain types of chemotherapy can affect the heart and lungs.
Why the conference remains special to me
My favorite part of myCancerConnection Cancer Survivorship Conference now is the hope that we long-term survivors give to the newly diagnosed. When I was first diagnosed, I was kind of overwhelmed, and it was so important to have the support of other people who’d been there. The myCancerConnection Cancer Survivorship Conference offers just that type of person-to-person contact. So does myCancerConnection, MD Anderson’s one-on-one cancer support community of patients, survivors and caregivers.
Just the thrill of seeing old friends at the conference year after year is incredible. None of us asked to be in the cancer club. But oh, the incredible people I’ve met through it! The friends I’ve made are truly lifelong. And MD Anderson really embraced me. That’s why I chose to remain in Houston. I actually left my job in New York to stay close to MD Anderson, just because of the warm support I received there.
‘It’s never behind you’
Sometimes people ask me, “Why are you still so involved in all that cancer stuff? Why don’t you just put it behind you?” The answer is because it’s never behind you. You are always a survivor. Always. And every test or screening for the rest of your life will be different because you’ve had cancer.
Some primary care providers still don’t quite know what to do with cancer survivors, so it changes the way you navigate even the most basic aspects of health care, like seeking treatment for a cold or the flu. I can’t tell you the number of times I’ve had to tell a nurse or doctor that the mass on my chest X-ray was just scar tissue, not a new tumor.
How the Cancer Survivorship Conference has evolved
MD Anderson doctors understand that when a survivor comes in, he or she will experience some things differently than someone who’s never had cancer would. And all of that is highlighted at each conference, and presented in such a way that the average person can understand it.
Over time, the Cancer Survivorship Conference has become more detailed in the information that’s shared. I think that’s why it’s grown so much. People are starting to realize how important it is. MD Anderson is always up on the very latest of the latest. It’s light years ahead of everyone else. And that’s why I keep coming back to the conference, too: to learn, to share, and to give hope to the newly diagnosed.
This year’s myCancerConnection Survivorship Conference will take place on Sept. 13 and 14. Register now.
Request an appointment at MD Anderson online or by calling 1-877-632-6789.