Rob Read, neuroblastoma and thyroid cancer survivor

"It seemed that doctors put more focus on healing the body, there was not be adequate emphasis on what to do after the cancer is gone."

As a one year old I nearly stopped breathing one day.  I was rushed to the hospital where doctors found a small grapefruit size tumor in my back, which caused my lung to collapse.  Shortly thereafter I was diagnosed with stage two neuroblastoma.  I had surgery to remove the tumor, received radiation treatment and my mother administered chemotherapy pills to me orally.  Doctors reassured my mother that there would be no side effects of the radiation.  Up until the age of 18 I had regular checkups to asses my overall health.  At 18 I was fortunately told that I had a clean bill of health.

While in college in 2004 doctors found a colloid nodule attached to my thyroid gland.  During spring break of senior year doctors removed this nodule.  Also apparent were multiple tumors attached to my thyroid gland.  Later I was told that my thyroid cancer could have resulted from the radiation treatment I received as a child.  Six months after my total thyroidectomy I underwent radioactive iodine treatment, which forced me to be in complete isolation for three days due to the radioactivity.  Once again I was not told by my doctors about potential side effects of this treatment. 

At the time of my second diagnoses I did not know the right questions to ask.  Doctors were minimally helpful in providing me information on his disease and on follow-up recommendations for coping.  It seemed that doctors put more focus on healing the body, there was not be adequate emphasis on what to do after the cancer is gone.  I believe that oncology doctors also need training on what programs and services are available to their patients after treatment to address post-cancer issues.  

I am currently giving back to cancer community and hope to start a cancer research related non-profit one day. I am the volunteer coordinator for The Leukemia and Lymphoma Society's Light the Night event, and chair the Sonoma County ACS leadership committee.  I believe that my volunteer and advocating efforts are just the tip of the ice berg.  I can never pay back all those people who sacrificed time, money and much more to enable me to be alive and cancer-free today.  However, I can join their efforts to help more people lead happy and productive cancer-free lives.

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