Almost six years ago, the doctor told me I had thyroid cancer. “But don’t worry,” he quickly added, clearly noticing the color draining from my face, “you are going to be fine. You have time to find a surgeon, it’s not the worst cancer, and you have the GOOD CANCER.”
With those final words, my mind stopped processing any more information. The only words I could hear—to think, to walk, to move, to survive—were GOOD CANCER. The part where my doctor described the removal, the radiation, the whole-body scans, didn’t reach my ears. It’s incredible how the mind works when confronted with a situation that makes you feel afraid, panicked, and overwhelmed.
Connecting with others
Three months after hearing those words, I realized how much of a “newbie” I was to thyroid cancer. This small gland controls so much in the body! I needed to educate myself, look for support groups, and meet others like me. I found many survivors and newly diagnosed patients with similar issues and concerns and quickly became as much of an expert as I could be. I learned many of these patients also felt their diagnosis was diminished by the characterization of thyroid cancer as a GOOD CANCER.
Thyroid cancer is real cancer
Thyroid cancer is not the “good kind.” No cancer is! I couldn’t understand why they used that term, or why they continue to use it. I still suffer from feelings that they lied to me. Living with thyroid cancer has not been an easy journey—surviving this cancer means dealing with secondary effects and changes for the rest of your life. As a survivor, you depend on hormone pills, continuous scans, and blood work; but the worst and hardest part of this journey is that doctors, nurses, caregivers, and family need to believe and understand your symptoms. When a surgeon removes the thyroid gland, it is not the end of a health ordeal, but the beginning of a new person—that person may sometimes be likable, and at other times be very unlikable, because they are constantly dealing with hormone issues, weight problems, blood pressure issues, palpitations…the list goes on.
Looking back, I think my first approach with the medical team helped me make decisions that affect how I research and ask questions today. Back then I was confused, afraid to ask questions. I thought I wasn’t supposed to feel this way. I didn’t give my mind and body time to suffer or adapt to the new me because I wasn’t supposed to feel like that; my cancer was the GOOD CANCER. I didn’t want to become the bothersome patient or the crazy hormone-woman who complained all the time. It was only after meeting others on the same journey, I realized I needed to take an active part in my own health care.
Thyroid Cancer is a hard cancer, like any other, so please, don’t diminish it or the struggle. My suffering is real and I don’t need to feel guilty or apologize for only having thyroid cancer.
They say things happen for a reason, and I believe that my reason is to be a voice for other patients with thyroid cancer. By talking about my experience, I can educate and help others open up and be less afraid or ashamed to share symptoms I know are very real. We can start by saying thyroid cancer is more treatable, rather than calling it a GOOD CANCER.
I finally stopped feeling guilty about only having thyroid cancer, and gave my body and my mind permission to suffer. I’ve finally made peace with the new me.
Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.
About the author: Alexandra “Aleka” Leighton is Chilean, but grew up in Venezuela. She is a journalist who loves to cook, read, run and lives with her husband in Miami, FL. Aleka works to create awareness about thyroid cancer in Hispanic and other communities. Find her on Twitter at @AlekaLeighton.