4 months. From the time my dad was recognized with pancreatic cancer to the time that he died was simply 4 months. It’s laborious 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 a variety of work to do, there have been steady incremental advances during the last 20 years — most just lately, developments within the function of genetic and tumor testing for sufferers and relations — 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 analysis, however as quickly as I heard these phrases, I went on-line and shortly realized there was a lack of knowledge, sources, and analysis dedicated to the illness. Again then, little or no was identified about pancreatic most cancers — solely a handful of researchers had been learning it and the 5-year survival price was simply 4%. I used to be indignant that my dad and 1000’s of different sufferers got no hope. They had been supplied no therapy choices and despatched dwelling 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 shaped 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 function as president and CEO, I’m honored to have the chance to work with the pancreatic most cancers group and I’ve watched PanCAN develop into the driving power for accelerating progress: funding over $149M in pancreatic most cancers analysis up to now, supporting sufferers and their households via our Affected person Providers program, and constructing a passionate and energetic group 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 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 recognized with breast cancer, found throughout a routine mammogram. I take into account myself exceptionally lucky — my analysis was early-stage because of breast most cancers screening — and after surgical procedure, I used to be cancer-free. I additionally had genetic testing accomplished, which is customary for breast most cancers sufferers, to find out what remedies may be finest for me and to know 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 vital 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.

Attributable to advances in analysis, it’s now really useful 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 finest therapy choices. And for the primary time, new tips launched by the Nationwide Complete Most cancers Community (NCCN) point out that figuring out your genetic danger could also be vital for relations who’ve had just one first-degree relative recognized with pancreatic most cancers. It is very important perceive your danger, keep knowledgeable, and be your individual finest 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 wish folks to take three easy steps that would save their lives: speak, check, and take management.

For first-degree kin 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 is best to have genetic testing. PanCAN Affected person Providers may help you put together for that dialog.

For these already recognized with pancreatic most cancers, PanCAN strongly recommends genetic testing for inherited mutations as quickly as potential after analysis, which may help inform relations of their very own danger in addition to probably influence the affected person’s therapy choices. We additionally suggest that every one pancreatic most cancers sufferers obtain biomarker testing of their tumor tissue via a precision drugs service like PanCAN’s Know Your Tumor to know if their tumor biology could assist inform therapy choices.

At present, pancreatic most cancers sufferers and their households have extra data and choices than when my father was recognized with the illness. And I’ve little doubt that with the continued relentless effort of PanCAN advocates, there shall be a day sooner or later when somebody is recognized with pancreatic most cancers early as a result of there’s an early detection check and cured as a result of there are new remedies. Within the meantime, every day we’re taking steps that speed up the speed of progress. Discuss, 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.

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