Meike is 48, and was diagnosed in 2009 with papillary carcinoma, follicular variant (columnar cell variant).
What was most surprising for you about the thyroid cancer experience? (good and/or bad)
Being told that I had a good cancer made me feel like I had a ‘fake’ cancer.
When I was given the news that I would require surgery, I did a lot of research and discovered the Thyroid Clinic at St. Joseph’s. I insisted on an appointment with them. I took control…that surprised me. But it paid off and I was pleasantly surprised by how quickly I was scheduled for appointments, surgery, therapy. I felt very well taken care of. The doctors and nurses at St. Joseph Hospital were/are amazing.
What was most confusing and/or frustrating for you?
My diagnosis was the most frustrating for me. My blood work didn’t indicate any abnormalities. My fine needle biopsy came back inconclusive. My new endocrinologist felt it was cancer; my surgeon was not convinced. The pathology report after my first surgery came back wishy washy using words like: "Likely represents…" and "Might be construed as…"
When I went for my follow-up appointment with the endocrinologist, he said there were two possible diagnoses. One would require a second surgery to remove the rest of the thyroid and the other where it would be ok to leave the rest of thyroid in place. I wasn’t comfortable that they couldn’t be a little more clear as to what the diagnosis was. My endo had the specimens sent to the Cancer Clinic for further assessment where a revised diagnosis of papillary carcinoma, follicular variant (columnar cell). I finally understood why it was so difficult to diagnosis. This type of variant is quite rare.
What was the most helpful and supportive?
I’m a single mom, and my children were 16 and 10 when I went through surgery and therapy. My children were very positive and supportive.
My cancer experience lasted almost a full year. Through this time my support team consisted of three amazing women who supported me in different ways. I believe that we need different types of support throughout this experience and rarely can one person provide it all.
My sister – she came with me to each of my surgeries. She’s the strong silent type, whose hand I held when I needed it most. Her strength and calm presence helped when I was anxious.
My mom – she came with me to appointments with the surgeon and was whom I called first to debrief other appointments and results. She reminded me of things I wanted to ask, or asked clarifying questions when she thought there might be some confusion. Plus, she was mom… and there were times I just wanted my mom.
My best friend – Jenn kept my spirits up. Living next door, we were together more often than the others could be. She was always ready with tea or a glass of wine (whatever the day called for). Jenn was great at letting me talk as little or as much as I wanted about the situation, but also helped me forget for a while and just have fun. When we weren’t together, we were texting or messaging. During my RAI she arranged a lawn party with a bunch of neighbours in my front yard, whom I visited with from inside the house. This is something we still laugh about today!
What do you wish you had known earlier in your cancer journey?
I wish I had had access to the information provided by Thry’vors. I only came across the site when researching RAI prep. It would have been nice to know what I could expect along the way.
It was only by accident that I became aware that the fine needle biopsy I was going to the next day was testing for cancer. When I told a colleague why I wasn’t going to be in the next day he was puzzled as to how I could be so calm given I might have cancer. I thought he was crazy. (I had no idea I was going in for a test to rule out cancer…this was not shared with me.)
What recommendations do you have for patients to help them feel more empowered/active in their care, and/or more in control?
I felt that I was navigating this experience in a fog. For the surgeons and doctors most of this is routine, but for those of us going through it, it’s anything but. I encourage everyone to ask as many questions as they need. It helps to write them down so you don’t forget… and you will forget! If possible, bring someone with you. I remember asking a question, hearing the answer and was absorbed in that and couldn’t concentrate on the rest of the information that was shared OR ask the questions I needed to.
I also made a conscious decision to think positively. I actually didn’t talk about the situation much while going through it. It wasn’t until afterward that I seemed to open up about it. I believe that was a coping mechanism which allowed me to control the type of information I took in and the energy I had around me.