Meet Carole, a Colorectal Cancer (CRC) survivor, advocate, and
a spokesperson for our #KnowYourBiomarker campaign.
Written by Carole.
Published with permission.
I was diagnosed in 2016 at the age of 42. Prior to diagnosis, I was in the best shape of my life, running/hiking daily, and practicing great healthy habits both physically and mentally. I was in utter dismay when a sore shoulder from a hike the previous day landed me in the ER and led to my diagnosis of Stage IV Colorectal Cancer.
I was discouraged to find out locally that my cancer was not able to be surgically removed, only treated with systemic chemo. Locally, I was given grim news of a 6-11 month life span after diagnosis even with chemo that would only be palliative.
I traveled to The Cleveland Clinic in Ohio to seek out a second opinion from leading experts in the field. I was offered genetic screening in addition to germline screening and tumor testing to determine where my cancer was coming from a genetic perspective. It was there that I learned all cancer is genetic, some semantic and some are hereditary. I found out through genetic testing that my cancer was in fact hereditary and came from a BMPR1A gene defect caused by a hereditary difference from my paternal side. My cancer is caused by Juvenile Polyposis Syndrome a line under the FAP umbrella(family)of hereditary cancers. As a result of my diagnosis and screening are done on my family members, we discovered my children all carry the defect, one son had 3 pre-cancerous polyps at age 19, my sister was diagnosed with the defect and was subsequently diagnosed with stage 0 colorectal cancer. Several aunts, uncles, cousins were also screened and it was determined they all carry the same hereditary marker. My diagnosis saved the lives of my family members and my children.
I began chemo in 2016 and the result was positive. What was first considered hopeless started to see glimpses of light. After 10 rounds of Folfoxfiri, it was determined that I had significant enough cancer death to go forward with surgical removal of the primary tumor and associated liver metastasis. This was done over a process of 3 intense and difficult surgeries. I also received the HAI pump implanted in my abdomen to administer chemotherapy after tumor removal as a method of post-surgery "Clean UP" of lingering cancer cells.
During this process and the chemo administered through the HAI pump, my liver began to fail and inflammation in the biliary track became difficult to combat. After 19 surgeries and multiple biliary stents, and biliary drains, in Oct. 2017, in The Cleveland Clinic Parking lot, I had a liver aneurysm and things became grim yet again. I was rushed back into the clinic and admitted into immediate surgery to fix the aneurysm.
After the surgery, the physicians determined my liver was not going to work and my life was again on the line. The Cleveland Clinic physician team was researching a novel new procedure from Norway involving Hard organ transplantation for patients with Colon Cancer limited to their liver. I was approached with the possibility that this could be a potential opportunity to extend or maybe save my life. The doctors felt there was no more we could do with my liver and that it wouldn't withstand any more intense chemo. I would have to find a donor for this procedure on my own.
My surgeons were decidedly sure that the transplant would work and asked me to seek out people that might want to donate a part of their organ to me. Much to my surprise, my congregation had 50 people willing to pass along a spare part(who knew the liver could be split or people would be ok with giving part of theirs. LOL). Jason(my donor)was a friend from church and felt he was called to donate his liver. He was the 6th person to be considered by Cleveland and ultimately my perfect match. There is a lot more to this amazing part of the story.
On April 23, 2018, Jason and I underwent a 14hr. surgery #20 for me in 3 years. The surgery was followed by a 6-week stay in Cleveland to make sure all was going well. I became the first person in the US to undergo this type of transplant after being diagnosed with Colorectal Cancer.
Currently, I live in CT and strive to bring more awareness to the disease and the inequity in care and opportunities related to care.
I believe that through genetic family history evaluations my children's lives were spared and we can do more to save others' lives.
Through the research of new novel approaches to the treatment I received life-saving opportunities to survive and these opportunities need to be available to everyone no matter what. We are fighting for life or death. I also believe that we can achieve these goals by offering better access to information to patients as they are being diagnosed and bring them the information that is necessary to save more lives.