Robyn Schmid Tiffie, Stage IVA Survivor/Patient
Oklahoma City, Oklahoma
Before diagnosis, I had about 10 years of tummy issues. From senior year of high school and well into my late 20s, I saw numerous doctors and several specialists. I was told that my symptoms were due to a subclinical hypoactive thyroid. I changed my diet, cut out gluten, went through almost every test possible just short of a colonoscopy. When a colonoscopy was presented to me as the next course of action at the age of 28, it was positioned like this: I was told that it probably wouldn’t give us any additional information (because at the time, they thought my symptoms were all diet/ gluten related) and it was expensive and that I was too young for the insurance to pay for it. At the time, I had single payer coverage and was barely out of college and honestly, all my doctors seemed unconcerned with the symptoms and told me it was pretty normal, so I made the choice most people would make when asked if they want to opt in for a colonoscopy.
A few years later, I was feeling some payoffs from some hard-won success in a new job that had great insurance and stability. But I was disassociated from what was going on with my body, because I was so focused on all other areas of my life. Luckily, I was beginning a new relationship with a wonderful man with whom I felt comfortable sharing some of my symptoms that I had been ignoring. And the day I shared with him what was happening was the first time someone said, “Robyn, that’s not normal.”
I listened to him, and 24 hours later I had an appointment with a specialist who told me I was too young to be seeing him, and prepared me at worst for a diagnosis of ulcerative colitis. I insisted on his first available colonoscopy. I was diagnosed with colorectal cancer.
I came away from my colon resection extremely sick from a massive infection from a pinhole leak that went undetected and unchecked for weeks. I was restaged from Stage IIIA or B to Stage IV because the first radiologists to read my initial scans missed the lesions on my liver. My treatment was delayed for months and I was given a temporary ileostomy, which I still have. My nutrition was so poor and my health was in such bad shape, that the gatekeeper/new patient staff at MD Anderson wouldn’t consider my case. Luckily, we had a personal connection with a nurse in another oncology unit there who hand delivered my files and plead my case.
Starting in October of 2014, I had 27 rounds of FOLFIRI. Almost a full year later, in October of 2015, I was told that I was a candidate for surgery because my response to the therapy had seen so many of the lesions shrink and disappear. From November 2015-January 2016 I had a liver resection in three separate stages–two major surgeries–that removed 85% of my liver. This past May I had a follow up scan that showed although my liver tests healthy and it has grown, some lesions also appeared on the remaining liver.
Since then, I’ve had 4 rounds of FOLFIRINOX, and scans. I’m hopeful that my body responds to the treatment as well as it did before. And the hope is this chemo will give me a good running start to then transition to immunotherapy–which my doctors are telling me they are well on the way of creating the vaccine for my tumor! I’m learning more as we go.
What One Million Strong Means to Robyn
I passionately feel that had I heard just once that maybe I wasn’t too young for this, we could have caught my cancer at a much earlier stage. And I want to contribute positively to the cause and the content that can be found on the Internet. In my first few hours of diagnosis, I turned to the Internet to research and dig into other survivor’s stories and experiences and Fight CRC was one of the first places I found that gave me facts and gave me hope. Since then, I knew I’d like to volunteer my time in some way, but I have missed your registration dates for various opportunities until now. I’m looking for a community, and I am eager to contribute.