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 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 quite a lot of work to do, there have been steady incremental advances during the last 20 years — most 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 discovered there was a lack of know-how, sources, and analysis dedicated to the illness. Again then, little or no was recognized 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 provided no remedy 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 change into the driving pressure for accelerating progress: funding over $149M in pancreatic most cancers analysis to this point, 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 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 long run for pancreatic most cancers sufferers, however I had a newfound realization in regards to the significance of affected person advocates once I turned a affected person myself.
In 2018, I used to be recognized with breast cancer, found throughout a routine mammogram. I contemplate myself exceptionally lucky — my analysis 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 commonplace for breast most cancers sufferers, to find out what remedies is likely to be greatest for me and to grasp 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 remedies for the illness.
This expertise bolstered 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 each bit of latest info, we unlock the mysteries of this difficult illness.
On account of advances in analysis, it’s now advisable 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 remedy choices. And for the primary time, new tips launched by the Nationwide Complete Most cancers Community (NCCN) point out that figuring out your genetic threat 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 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. Information is energy, and we wish individuals to take three easy steps that would save their lives: speak, check, and take management.
For first-degree kinfolk of pancreatic most cancers sufferers, we suggest that you just speak to your physician or genetic counselor that will help you perceive whether or not you need to have genetic testing. PanCAN Affected person Providers may also 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 attainable after analysis, which may also help inform relations of their very own threat in addition to probably influence the affected person’s remedy choices. We additionally suggest that each one pancreatic most cancers sufferers obtain biomarker testing of their tumor tissue via a precision medication service like PanCAN’s Know Your Tumor to grasp if their tumor biology could assist inform remedy selections.
As we speak, pancreatic most cancers sufferers and their households have extra info 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 might 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. Speak, check, and take management. Three easy steps that present info and empowerment now for pancreatic most cancers sufferers and their households. Study extra at pancan.org.
Julie Fleshman is president and CEO of the Pancreatic Most cancers Motion Community.
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