My advocacy journey began as a teenager when I stomped into that doctor’s office with my list of symptoms and a mission for a real diagnosis. I knew my life was on the line, and it is why I am here today. I was 19 years old and had every symptom of colorectal cancer. I have an extensive family history of colorectal cancer. My dad was diagnosed at 44 and his father passed away at the age of 41 of colon cancer. My grandfather’s brothers also suffered from early onset colon and stomach cancer. I was 17 when I first began feeling symptoms but was continually told I had internal hemorrhoids.
After 16 years of ignoring my long-term side effects from rectal cancer treatment and my Lynch Syndrome diagnosis, I recently had a hysterectomy to prevent endometrial cancers. I felt broken. I had to find a way to get the advocate in me to came alive again. I realized through meeting others in the colorectal cancer community, they were suffering from the same issues. There are many gaps in care when it comes to treating colorectal patients during and after treatment. I am filled with hope and confidence that these gaps in care are finally being recognized and addressed.
The Early-Age Onset Colorectal Cancer Summit focused on five main gaps of care when a young adult is faced with a diagnosis of colorectal cancer. I had never been in a room full of radiologists, oncologists, nurses, geneticists, social workers, survivors, and advocates. Several other survivors and I were invited to give short testimonials about the many gaps that we face.
The first gap has to do with the resources and information doctors have but don’t utilize. For example, Tabitha Cavanagh was diagnosed at 31 with stage III colorectal cancer. Her family health history was never brought up. Her medical team had information proving she was at high risk for getting colorectal cancer, but she was not screened ten years prior to the age of her youngest relative’s colorectal cancer diagnosis.
The second gap was focused on earliest possible diagnosis and treatment through timely recognition of the symptoms and signs of young adult colorectal cancer patients. Wes Hensel, stage III rectal cancer survivor diagnosed at 34, was not diagnosed until four years after experiencing symptoms. He later discovered that despite having no family history, he has Lynch Syndrome. If Wes had diagnostic and genetic testing when he first reported symptoms, he may have been diagnosed at an earlier stage. Wes’s children must get screened for Lynch Syndrome at 18 or younger depending on the comfort level of the parent and physician.
The third gap focused on the earliest possible diagnosis and treatment through timely recognition of the symptoms and signs of young adult colorectal cancer. I have never heard one story from an early onset colorectal cancer survivor that said they were not misdiagnosed. All early onset colorectal cancer patients have had to advocate for themselves to convince the doctor something severe was actually happening. As a result of not getting a timely diagnosis or treatment, young adults are dying of the most preventable cancer and it is on the rise.
The fourth gap focus was timely and effective quality of life and fertility preserving state of the art treatments. We need to focus not just on treating cancer but also on the future life of the patient. We need to make sure we discuss the options of preserving fertility and about sexual function after radiation treatment. Infertility has been one of the most painful parts of this journey for me. I feel a void in my life every single day. I never received the support I needed on this issue and was just left alone to deal with my grief of the loss of a child that I could never have.
The fifth gap focused on lack of palliative care. When we speak about palliative care, we think hospice, but every person needs palliative care during and after treatment. As a long-term survivor of 16 years, I still need palliative care. Psychological care, fertility treatments, genetic follow-ups, screening, scar damage prevention, pelvic floor therapy, ostomy care, bone health, neuropathy, skin damage, heart issues, vein problems, teeth damage, nutrients deficiencies, dehydration, and many other issues are treated with palliative care.
As survivors in a united force, we each stood up and asked why this happened and why is it still happening? In this journey, we have all been misdiagnosed and feel empowered to never let anyone be left in the shadows again. We trust our medical teams, so we listen to them and sometimes it ends up costing us our lives. To all of those in attendance on May 22, 2019, thank you for listening to me and my fellow survivors and being aware colorectal cancer is on the rise.