I was diagnosed with an underactive thyroid nine or 10 years ago and have been on thyroxine ever since, going from 75 mg up to 150 mg, which is what I’m on now. I had all the symptoms all the way through and my symptoms never really changed until I felt a small lump on the right side and I put off going to the doctors until I kept feeling it more just because I knew it was there. I really felt silly going because I thought it was all in my head, but the doctor knew just by looking at it, so off I went maybe four weeks later for an ultrasound. I was told it was a swollen thyroid gland on the right side. I will cut this short: I went for another scan six months later as it was getting bigger this time and was a bit more visible and the doctor had told me to, so I got referred to see a specialist.
Over the months, I was finding it hard to swallow, I was getting more breathless, tiredness and more depressed. I had an FNA (Fine Needle Aspiration) approximately four months after that because they were going to remove my thyroid as it was getting bigger quite quickly. The FNA came back negative. I was getting passed from pillar to post at the NHS hospital. With waiting times to see the consultant, then the surgical side, then the scan biopsies, it took nearly a year to get round for them to say it needs to come out, and even after that it took another two months to get an appointment to go for a review.
So my GP switched me to a different hospital, but by this time my neck was very big. In September 2012, I had lost a stone in weight in one month, so after numerous scans of anything but my thyroid, X-rays and blood tests the doctor couldn’t find out why I’d lost the weight and sent me to another NHS hospital for tests (I already had a November 7 appointment booked at a private hospital to look at my thyroid). I was admitted on November 1 and the plan was for me to stay in there a week for tests, but I had the private hospital appointment, so on November 7 I went there and the consultant decided they wanted an ultrasound and biopsies done that night. This was a very long and painful experience, I had to take the letter back to the ward to show what had been done to me.
I got back on the ward at 8:30 pm and the next evening at approximately 5:45 pm my consultant came and pulled the curtains round and told me I had thyroid cancer. The entire thyroid was affected and it was the worst type of thyroid cancer. He just said I didn’t need the biopsy on the temple now because he knew what was wrong with me, so I got sent home the next day. I had to go and see the private consultant the following Wednesday. Well I now had loads of questions – the first NHS hospital had told me after the FNA biopsies that I didn’t even have cancer? What stage was the cancer? How long have I got? Can it be operated on? So many things were going through my head. I couldn’t bear the thought of leaving my hubby whom I have been with since our teens. We are both turning 50 this year.
I was with my three children, my four grandchildren and my friends and as soon as we walked into the room the consultant told us, “I'm sorry but I don't have your results back yet.” My husband and I looked at each other and she said, “What’s wrong?” So I said, “Well I know what it is. It’s cancer and it’s anaplastic carcinoma.” She replied, “No one should have told you this or anything else about the matter until we get the biopsies back.” It was like I was in someone else’s dream. She was going to let us know the results as soon as she knew. I waited two anxious days until she finally rang and said, “Mrs. Woods, there is no cancer.” Well, I didn’t know whether to laugh or cry. She wanted to see me the next week. I won’t go into what took place between me and my family those few days.
When we went back to see her, she showed me the paper that said: “No malignancy,” but she told me that she wanted to send it for a third opinion. At this point there had already been two opinions, so it was once again a case of “Have I or haven’t I got it?”
It wasn’t until December 3 that I was told it was not cancer, but instead I had a very rare disease called Riedel’s thyroiditis. I saw a surgeon, but he told me he could not operate as it was stuck on my windpipe jugular veins and right carotid artery. I had my first appointment with an endocrinologist last week and he wants bloods, scans and a bone density scan, so at least I’m getting looked after at the moment. I have been on steroids for six or seven months, but I am going to try Tamoxifen soon as it has gone down, but as it’s gone down its gone inwards, affecting me more with the swallowing, breathless & depression. So that’s where I stand at the moment. I want this condition highlighted because of what it can do to you physically & mentally. This is still affecting me on both ways, but if I can help just one person I will be happy.