Oral Cancer: One Family's Journey

Started by Barbara, August 02, 2016
1 reply for this topic
Barbara

Member
558 Posts
Posted on
August 02, 2016
Most bloggers write about current experiences. My story is different. It spans the 33 years of my mother’s two bouts with oral cancer—one maxillofacial, which she survived with great courage and in the face of many challenges, and one squamous cell, which took her from us. The intervening years brought personal triumphs and daily traumas; the subsequent years resulted in recurring catharses of grief for her caregivers.
 
Of course, much has changed since my mother’s first diagnosis in 1963. Yet my family’s journey was so extensive that it still offers many lessons—some practical, some inspiring, some simply sad. They emphasize the need for better awareness and public education, for accurate presentation of the diagnosis and treatment options, for explaining anticipated changes in functionality and outward appearance, for careful selection of a medical team that is both highly skilled and compassionate, and for understanding the impact of the disease on the quality of life of everyone in the patient’s circle. It raises issues about palliative care versus surgery, of coping mechanisms and emotional support, of how to function as a survivor, and how best to negotiate the path to end-of-life decisions.  
 
This is my first post, and my goal is to expand the dialog by sharing experiences and learning how others have responded to the challenge of advanced oral cancer. What can we teach each other and how can we help those about to embark on this journey?
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DrScott

Member
0 Replies
Posted on
June 25, 2016
My deepest condolences on the loss of your mom, Barbara, and thanks for having the courage to tell your/her story. Also, thank you for putting up what appears to be Cure's first oral cancer post--I was disappointed to find that OC is not a main discussion heading for the magazine (...and yet anal cancer is; how ironic!). I'd welcome a further discussion with you about changes I envision in how clinicians and patients alike face OC as we move forward (see below). Dentists such as myself (non-practicing writer/researcher/blogger) need to do a much better job at re-defining early detection, mostly via salivary DNA testing now available, to identify OC risk at its very earliest stages. Some dental practices do not perform regular OC screenings, which came as a shock to me. While there have been some improvements, sadly, the OC survival numbers haven't changed appreciably since your mom was first diagnosed. I invite you to check out my consumer-focused oral-systemic blog at drscottsaunders.com, which features considerable OC content; please visit and leave your comments. Critical input from educators like yourself can only improve the content of my posts. Hope this helps--please do share your impressions and I look forward to contributing to your dialog!
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