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

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4 months. From the time my dad was identified with pancreatic cancer to the time that he died was simply 4 months. It’s arduous to imagine 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 loads of work to do, there have been steady incremental advances during the last 20 years — most just lately, developments within the position of genetic and tumor testing for sufferers and relations — that give me cause 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 shortly realized there was a lack of expertise, sources, and analysis dedicated to the illness. Again then, little or no was identified about pancreatic most cancers — solely a handful of researchers have been finding out it and the 5-year survival charge was simply 4%. I used to be indignant that my dad and 1000’s of different sufferers got no hope. They have been provided no remedy choices and despatched residence 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 at 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 position as president and CEO, I’m honored to have the chance to work with the pancreatic most cancers neighborhood and I’ve watched PanCAN change into the driving power for accelerating progress: funding over $149M in pancreatic most cancers analysis thus far, supporting sufferers and their households by means of our Affected person Providers program, and constructing a passionate and energetic neighborhood of volunteers and advocates who’re elevating funds and consciousness to drive our mission.

I’ve at all times been impressed by affected person advocates, witnessing firsthand what sufferers and their households do for PanCAN in honor of their family members to alter the long run 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 cancer, found throughout a routine mammogram. I take into account 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 completed, which is normal for breast most cancers sufferers, to find out what therapies is perhaps greatest for me and to know my household’s threat 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 therapies for the illness.

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

As a consequence of advances in analysis, it’s now beneficial that every one pancreatic most cancers sufferers get genetic testing for inherited most cancers mutations and biomarker testing of their tumor to find out their greatest remedy choices. And for the primary time, new pointers launched by the Nationwide Complete Most cancers Community (NCCN) point out that figuring out your genetic threat could also be essential for relations who’ve had just one first-degree relative identified with pancreatic most cancers. It is very important perceive your threat, keep knowledgeable, and be your personal greatest advocate.

November is Pancreatic Most cancers Consciousness Month and PanCAN is emphasizing the significance of testing for each sufferers and their households. Data is energy, and we would like individuals to take three easy steps that might save their lives: speak, check, and take management.

For first-degree kinfolk of pancreatic most cancers sufferers, we suggest that you simply speak to your physician or genetic counselor that will help you perceive whether or not it’s best to have genetic testing. PanCAN Affected person Providers 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 potential after prognosis, which will help inform relations of their very own threat in addition to probably impression the affected person’s remedy choices. We additionally suggest that every one pancreatic most cancers sufferers obtain biomarker testing of their tumor tissue by means of a precision medication service like PanCAN’s Know Your Tumor to know if their tumor biology might assist inform remedy choices.

As we speak, 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 therapies. Within the meantime, every day we’re taking steps that speed up the speed of progress. Speak, check, and take management. Three easy steps that present data and empowerment now for pancreatic most cancers sufferers and their households. Be taught extra at pancan.org.

Julie Fleshman is president and CEO of the Pancreatic Most cancers Motion Community.

This text is a part of WebMD’s contributor program, which lets individuals and organizations outdoors of WebMD submit articles for consideration on our web site. Have an thought for a submission? E-mail us at [email protected]



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