Talk, Test, and Take Control: Living With Pancreatic Cancer

Four months. From the time my dad was identified with pancreatic most cancers to the time that he died was simply 4 months. It’s exhausting to consider that greater than 21 years have handed since that have and the way it modified my private {and professional} ardour to create a world the place pancreatic most cancers sufferers can thrive. And whereas we nonetheless have quite a lot of work to do, there have been steady incremental advances over the past 20 years — most just lately, developments within the function of genetic and tumor testing for sufferers and members of the family — that give me purpose to be very hopeful about what lies forward and the chance to considerably change affected person outcomes.

Like most, I knew little or no about pancreatic most cancers earlier than my father’s prognosis, however as quickly as I heard these phrases, I went on-line and rapidly discovered there was a lack of knowledge, assets, and analysis dedicated to the illness. Back then, little or no was identified about pancreatic most cancers — solely a handful of researchers have been learning it and the 5-year survival charge was simply 4%. I used to be offended that my dad and 1000’s of different sufferers got no hope. They have been provided no therapy choices and despatched house to get their affairs so as.

That hopelessness and anger impressed me to take motion, and shortly after my father died, I found the Pancreatic Cancer Action Network (PanCAN) in 1999, a newly fashioned group on the time. I started my journey with PanCAN as a volunteer and was employed because the group’s first full-time worker in 2000. In my function as president and CEO, I’m honored to have the chance to work with the pancreatic most cancers neighborhood and I’ve watched PanCAN turn into the driving drive for accelerating progress: funding over $149M in pancreatic most cancers analysis thus far, supporting sufferers and their households by way of our Patient Services program, and constructing a passionate and energetic neighborhood of volunteers and advocates who’re elevating funds and consciousness to drive our mission.

I’ve all the time been impressed by affected person advocates, witnessing firsthand what sufferers and their households do for PanCAN in honor of their family members to vary the longer term for pancreatic most cancers sufferers, however I had a newfound realization in regards to the significance of affected person advocates once I grew to become a affected person myself.

In 2018, I used to be identified with breast most cancers, found throughout a routine mammogram. I contemplate myself exceptionally lucky — my prognosis was early-stage due to breast most cancers screening — and after surgical procedure, I used to be cancer-free. I additionally had genetic testing performed, which is normal for breast most cancers sufferers, to find out what remedies may be greatest for me and to grasp my household’s danger of sure sorts of most cancers. After that have, I used to be so extremely grateful to the breast most cancers advocates who had come earlier than me and pushed for early detection and higher remedies for the illness.

This expertise strengthened how necessary it’s to rejoice the incremental advances being made yearly for pancreatic most cancers sufferers as a result of I do know with every bit of recent data, we unlock the mysteries of this difficult illness.

Due to advances in analysis, it’s now beneficial that each one pancreatic most cancers sufferers get genetic testing for inherited most cancers mutations and biomarker testing of their tumor to find out their greatest therapy choices. And for the primary time, new tips launched by the National Comprehensive Cancer Network (NCCN) point out that understanding your genetic danger could also be necessary for members of the family who’ve had just one first-degree relative identified with pancreatic most cancers. It is necessary to grasp your danger, keep knowledgeable, and be your personal greatest advocate.

November is Pancreatic Cancer Awareness Month and PanCAN is emphasizing the significance of testing for each sufferers and their households. Knowledge is energy, and we would like folks to take three easy steps that would save their lives: discuss, check, and take management.

For first-degree family of pancreatic most cancers sufferers, we suggest that you just discuss to your physician or genetic counselor that can assist you perceive whether or not you must have genetic testing. PanCAN Patient Services will help you put together for that dialog.

For these already identified with pancreatic most cancers, PanCAN strongly recommends genetic testing for inherited mutations as quickly as doable after prognosis, which will help inform members of the family of their very own danger in addition to doubtlessly impression the affected person’s therapy choices. We additionally suggest that each one pancreatic most cancers sufferers obtain biomarker testing of their tumor tissue by way of a precision drugs service like PanCAN’s Know Your Tumor to grasp if their tumor biology might assist inform therapy choices.

Today, pancreatic most cancers sufferers and their households have extra data and choices than when my father was identified with the illness. And I’ve little question that with the continued relentless effort of PanCAN advocates, there will likely be a day sooner or later when somebody is identified with pancreatic most cancers early as a result of there may be an early detection check and cured as a result of there are new remedies. In the meantime, every day we’re taking steps that speed up the speed of progress. Talk, check, and take management. Three easy steps that present data and empowerment now for pancreatic most cancers sufferers and their households. Learn extra at pancan.org.

Julie Fleshman is president and CEO of the Pancreatic Cancer Action Network.

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