LETTER FROM GINA

 

Cholangiocarcinoma, or bile-duct cancer, is an under-funded, under-talked about and ‘under-screened for’ type of cancer, and yet it attacks one of the most vital organs – the liver.  Often, it is not found until it has spread making treatment options extremely difficult.  

After experiencing pain similar to gall stones after eating dinner one night, my husband made a doctor’s appointment for a checkup.  His doctor, who suspected gall stones, sent him for a scan which revealed his gall bladder was fine, but there were “spots” on his liver.  The news from there was unimaginable.  Advanced Cholangiocarcinoma.  

At the time of Patrick’s diagnoses, we were told this cancer affects 6,000 people per year and it mainly affected older males (70 years +) in predominately Asian countries. Doctors had little to no explanation as to how an otherwise healthy male in his thirties had it, especially since Patrick had no symptoms and didn’t fit any of the ‘causes’ of this cancer.

To hear the words ‘You Have Cancer’ is life changing.  To hear ‘It’s Incurable’ is devastating. While searching for treatment options because you are ready to start the fight of your life and to hear ‘You have a rare cancer and options are limited because it’s so rare’ is unacceptable and needs to change.

The fact is, this is a cancer that affects more than 70 year old males in Asian countries. On an online group I belong to, there are countless stories of people in their 20s, 30s, and 40s being diagnosed across the United States and in other parts of the world.  It’s becoming more and more prevalent. 

No one should ever hear you have cancer and there isn’t much we can do.  We heard it and it knocks the wind out of you, it shatters your heart into pieces, and it makes you cry tears you never knew you had.

The Cholangiocarcinoma Foundation is dedicated to finding a cure for this cancer and improving the quality of life for those affected. Raising awareness and raising funds that goes toward research to finding effective treatment options and ultimately a cure is my hope so when someone does hear those life changing 3 words, they are followed by ‘but here’s what we can do to help you and to eradicate this from your body. We have many options for you’. 

I, and both of our families, thank you from the bottom of our hearts for your support and your remembrance of my dear husband — a loving son, brother, grandson, nephew, cousin, friend, neighbor, colleague, racer and lover of everything cars.  

- Gina Hespen