Surgery on Monday

Morning,

I’m somewhat concerned about my Surgery on 17/5 as everything has gone from slow to unbelievably fast in under a week.

My first visit was to my GP in November 2020 presenting with swollen glands in my neck, difficulty breathing, swallowing, hoarse voice, fatigue, sore throat and some other bits and bobs such as terrible ringing in my ears and a chest rash that has now been biopsied.  I’d had these symptoms for over a year. The GP referred me to an ENT consultant to be scoped, this happened in December 2020 and I explained all my symptoms again and was told that I was run down and most likely had COVID early in 2020. My lifestyle is a very healthy one and the explanation of run down made me press them a little bit was pretty much dismissed and rushed, however I was scheduled for a ultrasound on my neck. At this point no one had discovered, investigated or even said the issue could be with my thyroid. 

After 5 months of calling & visiting my GP and being vocal, with constant dismissal by my practice and that my ultrasound was non urgent, calls to the hospital to try and schedule an appointment I eventually got to see my primary GP and managed to get my neck ultrasound appointment. 

This appointment then turned out to be a FNA on the spot with reassuring words which was two days after my chest biopsy. Two days later I get a call to visit the ENT consultant surgeon the next day (May 7th) where I was told that the biopsy was suspicious for a papillary thyroid carcinoma and that I was “warned” that I will most likely need some surgery on my thyroid gland and a thyroid lobectomy. In addition I was told that my case was already referred to a 30 strong MDT meeting at Addensbrook. 

May 12th I got a call from the head consultant ENT surgeon telling me he would be performing a total thyroidectomy followed by RAI, but was totally dismissive of my questions and that surgery would be 1-2 months who then backtracked saying it would be late May or June. The consultant kept tutting at my questions, continued to be dismissive of my requests for Thyroid Function test, CT/MRI etc as the only. Later that day I was called by a MacMillan Nurse, who was more sympathetic and was the first time I was told my mass was 5cm x 3cm, only the right side of my thyroid and the first time they had seen a cancer like mine growing inside of something else in my Thyroid and that they had referred it back to the radiologist for more investigation to the results (this is where it gets sketchy as I can’t recall exactly what they said and getting info is like pulling chickens teeth). 

On May 13th I got a call from the hospital asking me to attend a Pre Surgery appointment yesterday 14/5 as I was now classed as rapid access followed by a call later the same day that Surgery was scheduled for 17/5- a COVID swab later with self isolation until Surgery on MONDAY. 

No staging, no information as to why it’s now such a rush, which I’m truly grateful for however the lack of information, dismissive by the consultant who advised he had asked his team to play down what they told me on 7/5. I’ve left messages for everyone as I feel I’m in the dark and only know more by researching MacMillan, NHS and other similar sites. No one has told me the length of surgery, managed my expectations or able to know exactly what they are taking out, aside from the whole thyroid - I’ve managed to find out it’s around a 4 hour procedure, that I’ll need a small tablet a day for T3 or T4- to make matters even better I’m immunodeficient due to MS and past autoimmune diseases.

I’m grateful once again for the speed that everything is moving now considering others that may have had to wait or are still waiting, but feel my concerns are warranted as I’m not able to get the full facts, that I’ve been dismissed every step of the way and going into this knowing that I don’t really know how bad or good things are or it’s due to my self advocacy and by educating myself- thanks in advance for any responses- I’m male, turned 52 four days ago, best Birthday gift ever.