Providing hope to cholangiocarcinoma patients by raising and investing in breakthrough research to prevent and cure cholangiocarcinoma, and providing support as they navigate their journey through mentoring, advocacy, love and prayer.
Lisa's Rare Cancer Story
By Lisa Craine | September 23, 2020
When I thought of the word rare I envisioned something precious, beautiful, and exceptional, like an amazing piece of art in a museum; something that brought joy and smiles to people. I didn’t think of diseases until I was diagnosed with Stage IV Cholangiocarcinoma in 2010. When I researched bile duct cancer, I learned that less than 20, 000 people are diagnosed a year. I learned that the 5-year survival rate is 8%. I read that rare diseases were classified as orphan diseases, so I was now considered a rare orphan? My heart sank thinking about the sadness of being an orphan. My sadness grew as I was told I had six months to live. Thank goodness for second opinions, research, and not giving up hope. I had genomic testing in 2010, but at the time there were no clinical trials for bile duct cancers.
Fast forward to 2020 and I am celebrating 10 years since my diagnosis thanks to organizations like NORD, The Cholangiocarcinoma Foundation, Target Cancer, and The Bili Project. The pathway has had many bumps in the road including 5 recurrences with 8 tumors, but the joyful moments have outweighed the bumps! Being a rare disease survivor has been a catalyst for positive change in my life, pushing me to be a voice for our community and to advocate for others. I want to shout from the mountain tops that rare is beautiful! Orphans are beautiful! You are not alone!
I have had no evidence of disease for years now, but not a day goes by that I don’t wake up knowing that it can come back any time. I recently had one of those bumps in the road. My MRI showed a spot on my spine which the radiologist noted potential malignant metastatic disease. The weeks to follow were filled with tests, tears, anxiety, and more tests. The final diagnosis was a compression fracture resulting from radiation treatment in 2014. Wow, cancer treatments... the gifts that keep on giving! Driving home I thanked God for compression fractures, neuropathy, and body aches because I can live with these.
I am grateful for the gift of life and I share my Hope with others through raising research funds for Cholangiocarcinoma through our 501(c) 3 charity we started in 2012, Craine’s Cholangiocarcinoma Crew. I mentor patients and provide them support through love, prayers, and knowledge. I volunteer for the Cholangiocarcinoma Foundation as a research Advocate and love sharing what I learn with others. If I could only share one piece of critical information with a new patient, it would be to have biomarker testing. I have watched over the last ten years the progress in rare disease treatments and this can be life-saving.
Yes, I am rare and unique but I am not an orphan! I am surrounded each day by our rare disease community and I am proud to be a part of it. My heart is joyful each day for the opportunity to spread hope, love, and kindness with others.