PEN-Powered Activity Guide VI


I never dreamed of being a patient advocate , but then again , I never dreamed of receiving a cancer diagnosis , either . When I was diagnosed with thyroid cancer in January 2017, I didn ’ t have any symptoms . I was told I had the “ good ” cancer or “ the cancer to get if you had to be diagnosed with one ” by my doctors . I took this information to heart , and accepted that cancer was now a part of my l ife , and there wasn ’ t anything I could do about it . It wasn ’ t unti l I ended my treatment , when I declared myself a survivor , that I real ized I was completely wrong . I recognized there were choices I could have made regarding my treatment plan and there were sti l l opportunities to take charge in how I was treated as a patient . Enter patient advocacy in the cancer world . Everyone has a story , no patient or cancer is the same . We each have our own unique experience of how we move through the healthcare system beginning the day we ’ re diagnosed with the “ C ” word . I knew my story was unique because I was an AYA patient , or an adolescent and young adult , I was working ful l - time , and I was in graduate school . I dreamt of being publ ished on places other than social media . I wanted an outlet where I was free to share my side of the story without having to hold back . A place where I could share not only the ups and downs of my journey , but my own insights of what it was l ike to be a young cancer patient . A place where I could advocate for other thyroid cancer patients – let them know what to expect , the questions they should ask of their care team , and how to best take care of themselves . Enter the Patient Empowerment Network . Patient Empowerment Network ( PEN ) is an advocacy organization for cancer patients whose “ mission is to fortify cancer patients and care partners with the knowledge and tools to boost their confidence , put them in control of their healthcare journey , and assist them with receiving the best , most personal ized care avai lable .” I discovered them through one of their tweet chats on Twitter using the hashtag # patientchat . I immediately reached out to see how I could get involved . Leadership discussed their strategic vision of having “ managers ” for different cancers that would create and curate content to educate other cancer patients and help them feel empowered . I was honored when I was told that I would pi lot this program as the Thyroid Cancer Network Manager , and my content would be read and shared by others .


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