I was told I had colorectal cancer a week after my 37th birthday. Misdiagnosis, surgeries, miscarriage, pain and delays led up to this diagnosis. Doctors dismissed my concern that something was terribly wrong and they assured me I am too young to have cancer.
My nana passed away at age 54 from colon cancer and she too was told she was too young and healthy to have this cancer. Since my parents had no polyps there seemed to be no concern for me. Little did we all know that I have a rare genetic disease that grows lots of polyps. One of my sisters was screened right after me and discovered she had the same disease but minus the cancer. She had no symptoms. My symptoms started a year prior and they evolved; pelvis ache, tailbone pain and bowel habit changes. All were blamed on something other than cancer. I had low iron for years but was told it was from my vegan diet. I just thought my body had a hard time absorbing iron.
I was told I was inoperable and I would likely only live 3-5 more years. My cancer had spread to my lungs. I was told from another cancer patient that I had to connect with Filomena at CCRAN. I emailed her and within a short time she gave me a call which gave me so much hope for my future. Hope was needed for me to continue living with a positive mindset. After 6 months of chemotherapy and feeling extremely healthy I was approved for colon surgery. My colon surgeon removed my entire colon since I had polyps that lined it, leaving me with a temporary ileostomy bag. After that I saw a Thoracic surgeon who removed 2 out of the 5 lung nodules.
I thought everything was going smoothly until my next lung nodule removal was cancelled. I was left overwhelmed as I knew something more could be done but I didn’t know how to navigate the medical system. That’s when I reconnected with Filomena at CCRAN to seek her advice. She made it her mission to get me the care and treatments needed.
I am heading into a procedure tomorrow for my lungs. I have plans in the works for treatment after discovering my cancer is also in my spine and rib (but still limited). I feel less overwhelmed knowing I can call, text or email Filomena anytime when another issue arises. In addition, CCRAN offers patient zoom meetings where I feel supported and offers new research/trial information plus web seminars with medical professionals who discuss new treatment options. This service is vital for anyone battling this disease as it fills in the holes of the medical system.
I hope I am able to reach no evidence of disease (NED) this year. I am fighting to live as long as I can for our 3 year old daughter, Vera, who is named after my nana.