Lesley on thyroid surgery 

I first found out that I had a goitre in 2007 when I was 70. I went for an MRI scan to check my collarbones, which looked unequal. The verdict was that the collarbones were just a strange bony shape, but nothing to worry about. But something had pushed the windpipe and larynx over to the right of my neck. An ultrasound scan revealed a nodule in the neck, originating from the thyroid.  

Now this was pointed out, I could see there was clearly a lump lying over the top of the collarbone when I swallowed. It was about 7 cm in length and a biopsy confirmed it was benign. I was told thyroid growths are common and subsequently went for annual checks until 2012. As the goitre had not grown, I was then told no further checks would be done. I was glad when I heard that and more or less forgot about the nodule. This was definitely a mistake! I should have been aware of the need to get it checked regularly.  

During a successful knee operation, the anaesthetist noticed a ’wheeziness’ in my chest. My GP then referred me for follow up tests. In January 2020, we met the ENT surgeon and saw the results of the CT scan. My husband, Ian, and I sat there amazed as we saw how a large lump of tissue associated with the thyroid nodule had grown down into the chest area. This was visibly squeezing the windpipe almost flat as it made its way around the obstacle. Suddenly, my breathing problems and lack of energy were explained. I was just not getting enough air into my system. The ENT specialist seemed to think I would be quite ‘happy’ to adopt a ‘wait and see’ approach to the problem. He was quite mistaken about that! 

My husband and I barely had time to discuss the matter, as only five days later, he died very unexpectedly from a leaking abdominal aneurism. My daughters and I were all severely shocked at losing him so suddenly. Dealing with the consequences of this took up all my time and efforts for the next few weeks. However, in March 2020 I went back to the GP to try to get something done about the breathing problem, which had been slowly getting worse. Looking back my failing energy seemed obvious but I put it down to ageing.  

I expected that something could be done but was not sure what. An internet search put me onto the BTF, and I got in touch with them and joined as a member. This proved to be very helpful. They kindly told me about the NICE guidance on thyroid disease, which has details about non-cancerous goitres causing compression of the windpipe. I followed this up with my GP who arranged more tests. The consensus was still to ‘wait and see’, which I was unhappy about.  

So, I arranged for a second opinion from a private ENT specialist. The onset of Covid-19 meant a further delay. When I eventually met the consultant, he explained an operation could be done to remove the entire goitre and told me that it would be wise to get this done while I was in relatively good health. This gave me some of the confidence I needed to push things along with my local doctors.  

They did respond at that point. I went for another CT scan at my local hospital followed by some phone consultations. I felt my breathlessness whilst talking on the phone with them finally convinced them my problem was real. I was referred to Guy’s Hospital in London, as it may have been necessary to open up the chest to remove the whole of the goitre. This was a very scary idea to me. After a thorough inspection, my consultant seemed quite confident the entire goitre could be removed through an opening in the neck but a team would be standing by to open up the chest if needed. I certainly hoped he was right about that.  

Waking up in the recovery ward was one of the best experiences of my life! I felt immediately that I was breathing normally again! There was very little pain, just a bit of discomfort in the throat area. Wonderfully, the chest had not been opened up. By the afternoon I was well enough to ring my daughter myself and tell her the good news – in my new, surprisingly deep, voice. There was no need for any painkillers. The wound was 15 cm long and had been sealed by a series of metal clips.  

My consultant told me the windpipe had resumed its usual round shape in the middle of the chest immediately after the goitre had been removed. That was what I wanted to hear! He informed me that the goitre material had weighed 300g. Quite impressive! It was hard to believe that everything had gone so smoothly! Just 48 hours after the operation, I had my metal clips removed at the GP surgery. This was all pain-free. My wound healed quickly and was not very noticeable at all. My daughters stayed to help me during my recovery. After about three weeks, I was feeling a lot better and energetic enough to do some jobs around the home with a bit of help from a friend.  

On my follow-up visit, my consultant explained a very tiny amount of cancerous material had been detected in the middle of the goitre but that it was quite isolated, not of a spreading type and had been entirely removed by the operation. Looking back, I feel I should have been warned by the ENT people I saw back in 2007 about the possibility of the ‘retrosternal’ goitre in my chest developing from the growth in the neck. I had been completely in the dark about it. Eight years had gone by with no monitoring or testing of the goitre.  

I do regret my lack of curiosity about my own condition. But as you get older, it is easy to blame the years for your failing powers, rather than trying to pin this down to any particular cause. So, I would like to feel that any older person reading this will be encouraged to demand an investigation. Never forget, YOU are the person most concerned by your own condition, and you will be the person who needs to take it most seriously for your own quality of life. 

For more information, please see our patient resources on thyroid surgery

and thyroid nodules and goitres (swellings)

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