Anyone who has read my previous post What even is hyperparathyroidism, anyway? will know that towards the end of 2020 I started experiencing some pain and stiffness in my hands, as well as an overwhelming feeling of fatigue. Due to coronavirus, the next step was a bit delayed, but it eventually led to me having a rheumatology appointment on 24 May 2021. The locum rheumatologist I saw that day thought it was probably due to lockdown and being indoors, but sent me for a blood test anyway. This was the beginning of a chain of good decisions and flukes that have potentially saved my life.
The blood test I had led to a few more, before I was eventually diagnosed with primary hyperparathyroidism in August 2021. I was immediately referred from endocrinology to a surgeon to arrange removing the affected parathyroid gland. This surgeon arranged a number of scans to locate the affected gland, including an ultrasound of my neck.
At this ultrasound on 12 October 2021, the sonographer found two nodules in my thyroid gland, purely by chance while looking at my parathyroid glands which are located nearby in the neck. She told me there was probably nothing to worry about as they were both small and nodules in the thyroid gland are very common, but added them to her report to my consultant anyway. My consultant decided to refer me for further tests to be on the safe side.
On 17 December 2021, I attended another ultrasound appointment to have a fine needle aspiration (FNA) of the larger of these nodules to determine what it was. I was incredibly nervous about this procedure – and it was fairly unpleasant. The doctor said that the nodule was on the borderline size of concern, so there was a chance they may not need to do the FNA at all. He got a second opinion from a colleague who agreed that the size wasn’t of concern, but suggested that as I was there, I should have the procedure done anyway – “because if we don’t do it, you’ll always wonder,” and to be fair, he was bang on there!
On 14 January 2022, my surgeon told me that the results of the FNA were inconclusive and had been graded a 3f, meaning they couldn’t determine what the lump was but there was a 1 in 4 chance that it was cancerous. In ordinary times, this would have meant having surgery within 12 weeks to remove that section of my thyroid, but it was in fact 18 weeks before I could have this procedure, on 19 May 2022.
On 13 June 2022, I was told that the nodules were a type of thyroid cancer called papillary carcinoma. They had caught the cancer early and removed all of it, which means I don’t need to have any further treatment for it, and will just have follow-up appointments.
Every single one of these decisions could have easily gone the opposite way, and I would now still be on the waiting list for surgery to have my parathyroid gland removed, while unknowingly having cancer. In fact, there are a few of these decisions that I didn’t agree with at the time – particularly the decision to do the FNA! But every single one of these healthcare professionals trusted their knowledge and instincts and made the best decision for me.
Thyroid papillary carcinoma is the most common type of thyroid cancer and is treatable in most cases, and I’ve been told it won’t affect my life expectancy now it’s been removed. But I didn’t have any symptoms or even a lump that you could feel in my neck, and it’s impossible to know how long it could have gone on, undiagnosed.
While I don’t feel particularly fortunate to have had cancer or primary hyperparathyroidism – or arthritis, for that matter! – for an unlucky person, in terms of my health, I am feeling incredibly lucky today.
Oh Collette! Just came across your Blog and what a relief that this series of decisions has resulted in you finally being given the all clear. As you say could have definitely gone completely differently if one person had ignored their instincts!