Feelings upon Diagnosis
It was April 4, 2019. It had been ten days since my total thyroidectomy, and I was getting ready to pick my son up from preschool. A few minutes before I needed to leave, I got a call. When I answered, it was my surgeon. He asked if I was available to talk for a few minutes. I didn’t know what he was going to say, so of course, I said yes. He proceeded to tell me that my thyroid pathology had come back, and it was confirmed that I had follicular thyroid cancer.
I remember I was standing when we first started talking, and at that moment, I sunk down into my desk chair. I started taking notes, trying to write down everything he was telling me about my cancer, but in reality, I could barely hear him. After we hung up, I felt like a zombie moving through the motions—putting on my shoes, grabbing my keys, driving to my son’s preschool. I didn’t make eye contact with anyone and just got my son in the car as quickly as I could.
When I got home, my husband, who was working in our home office, was in a meeting, so I just sat on the couch and waited in shock. Once his meeting was over, I didn’t have the words to tell him what I’d been told just a half-hour earlier, but once he saw my face, he knew. It took me a few days to process what I’d been told. I didn’t cry, and I didn’t feel particularly angry or upset. I was mostly just in shock.
As our survey results show, this experience can be different for all of us. While I was mostly in shock, others described their experience as “an out of body experience” or “like my world had stopped.” They felt fear, numb, alone, afraid, uncertain, sick, lost, confused, worried, scared, and, like me, shocked. Some weren’t asked if they were available to chat upon answering the phone—the news was just given. Others received their results via a portal before their scheduled appointment. Many were told they had the “good cancer” and felt as if their diagnosis was downplayed, but cancer is cancer.
How to Support a Thyroid Cancer Fighter
Once you get diagnosed with cancer, everything changes, or at least it did for me. I suddenly started thinking completely differently, and I needed support from family and friends more than ever. In the beginning, I needed help processing what had happened. Having a listening ear or someone to help me with my kids meant more than anything.
As things progressed following my surgery and I needed radioactive iodine treatment, the little things people did for me meant so much. I had one friend gift me a mug that said “You Got This,” and another friend that would just check in via text every couple of days to make sure I was doing okay. My husband and sons were great supporters as well. My husband gave me the space and time I needed to heal and process everything I was going through, and the unconditional love I got from my boys was immeasurable.
So, if you’re wondering how to support a cancer fighter, it doesn’t take much—be there for them, listen, and do little things because those are the things that add up to mean the most.
It all comes down to love. Where it differs is how this love is shown. Sometimes love means being the distraction, hanging out, or watching a movie. Sometimes love means giving someone space and time to process. Our survey results show that the majority of thyroid cancer survivors just wanted to be heard—to have someone there just to listen with no responses, no opinions, and no judgment. Unfortunately for many, this is easier said than done. Thyroid cancer is an invisible cancer, so it can be difficult for our support squad to understand what is wrong, but even if you don’t understand, just be present.
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What I Wish I Knew Sooner About Thyroid Cancer
I was under the impression that once I went through surgery, radioactive iodine treatment, and started taking levothyroxine at the right dose, life would go back to normal, and everything would be how it was. That just wasn’t the case, and that’s the biggest thing I wish I had known sooner. I am not the same person I was before thyroid cancer, and I never will be. I have a lifelong commitment to medication to keep me alive, and I have to be my own advocate for my health far more than I ever thought possible.
Having cancer, even when you are told there is no evidence of disease or are in remission, is a life-changing diagnosis that completely changes you. This is by far the greatest misconception out there. As our survey results show, it is NOT just about taking a pill daily and being okay. Survivors mentioned feeling frustration, low energy, hormonal imbalance, and even depression.
Many mentioned going to therapy, because it’s not just a pill: It’s the right dosage and the right brand and bloodwork from now until the end of time. It’s a new normal, and to be completely honest, there is a fair amount of survivor’s guilt that comes along with it. It can be trying to be grateful to still be here, as well as acknowledging that it’s not an easy process.
We would like to take a moment and thank everyone who participated in our survey, both survivors and supporters. Thank you for your vulnerability and for being so open to sharing your experiences. For allowing others to share in your comment and know that they are not alone. It is by amplifying our voices that we can continue to create awareness about this invisible disease and educate our supporters.
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According to our survey results, here’s some dos and don’ts to follow:
What to avoid saying/doing:
- Don’t ask about it constantly. A periodic check in would be nice, but sometimes I just don’t want to think about it. Allow me the chance to bring it up if I want to.
- Pity eyes.
- Don’t say, “It’ll be okay, don’t worry.” Even if it will, this doesn’t make it any easier and can feel dismissive.
- Don’t mention “the good cancer.” There’s no such thing as a “good” cancer.
How to support someone newly diagnosed:
- Listen instead of trying to fix things or just dismiss what’s happening.
- Accompany me to appointments whenever possible.
- Ask them what they need: Do they need to vent or do they need a distraction? And then be the person who listens or provides the distraction.