Rare disease awareness event in nyc.

Voices of Rare Cancer: Jan’s Story

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My name is Jan and in January 2018 life changed for my husband and me as we knew it. I was on the operating room table to have gastric sleeve surgery. I had six months of intense and detailed medical tests prior to the surgery. Imagine my shock when I woke up from surgery (the first time I had  major surgery except for a tonsillectomy) to be told: “they couldn’t do your surgery…they saw something on your liver so they aborted your planned surgery and did biopsies. WHAT!?? My mom died from cholangiocarcinoma (bile duct cancer) in 2011. I am so thankful to Dr. Peters for seeing this shadow on my liver and recognizing that it wasn’t good, or I probably wouldn’t have been here today. Shortly thereafter I heard those wordsYou have cholangiocarcinoma. Wait – what? I had been told cholangiocarcinoma was NOT genetic. After a misstep in my care, which often happens with cholangiocarcinoma patients, as there are a limited number of oncologists who truly understand this complex, deadly cancer, I knew I was literally in a fight for my life.   

My incredibly supportive internist Dr. Maleh got me an appointment with Memorial Sloan Kettering Cancer Center. When I went to MSKCC, I felt cared for and that I had hope. Dr. Jarnagin gave me hope. Not long afterward I was on the operating room table having a liver resection. It truly was a whirlwind and without the love and support from my amazing husband I would have been a mess, but his confident, positive attitude and determination that WE would get thru this was all I needed. MSKCC does its own genetic testing “the impact study.” I love knowing that in the future when traditional modalities and treatments for cholangiocarcinoma fail, I have options with the mutations identified with this testing. This is a HUGE bonus for patients. I then met my incredible oncologist, Dr. Shcherba, and started a six-month course of Xeloda. It was tough. I had hand-foot syndrome from day 4 of my first cycle and now suffer from neuropathy in both my hands and feet but I am alive and continue to fight. Some days are tough. Super tough. The one thing that many cholangiocarcinoma warriors wish people knew is that just because we “look” good…doesn’t mean we “feel” good. Many of us are masters at looking good all the while feeling awful. We get used to faking it. We do that for family, friends and for ourselves. We WANT to feel like our old selves and sometimes forgetting about cancer, putting on make-up, and dressing up can do just that. We pay for it the next day…we are exhausted. But it is so worth it. 

I now spend my time raising awareness about this cancer, which has included a radio interview on a local station, articles in a local magazine, painting rocks with my friend for awareness (Rocks for Cholangiocarcinoma Awareness on Facebook), and sending out large boxes with cholangiocarcinoma swag to all major news stations and talk shows (sadly, no response yet)I also had Delaware declare February 12 World Cholangiocarcinoma Day, making it the first state to ever do this! The mayor of Wilmington did a proclamation for our original race day to declare Wilmington Cholangiocarcinoma Day, and so much more. I had also planned a 5k,  only to have to postpone it due to Covid-19, but we will now do a virtual event (bit.ly/QuackOut). 

Cholangiocarcinoma is often diagnosed at a later stage. It is difficult to treat with limited treatment options and has poor outcomes. We need to change this. I don’t miss an opportunity to try to spread awareness about this rare and aggressive cancer. I truly believe that awareness = donations, donations = researchresearch = hopeAnd we all need hope!  #rarecancerpatientsmatter #aloneweareraretogetherwearestrong #cholangiocarcinomapatientsmatter #RareCancerDay 

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