Papillary thyroid cancer

I am sure most start with...... Its been a journey but it truly has. Nearly 5 years ago now I presented to my GP with severe Night sweats and itching as well as a few other things that were suggestive of under active thyroid. However, my one blood marker was always within range with the other one being way off (I still don't know what they are but one is T4!?)

All was a mystery but I was put on propantheline bromide and the night sweats stopped. I did however mention that I have a funny sensation in my throat often, like something is stuck, had a cough for a while and my voice was getting really hoarse even though I wasn't ill. Reluctantly they did an ultrasound and found the left side of my thyroid was enlarged and I have several nodules but one was 2cm, It was classified as U2 and I was discharged back to GP Care. 

It wasn't until a few years later I ended up back in front of that consultant again as the propantheline bromide was low in stock and you could only have a prescription from a consultant. I mentioned by throat again as it was getting worse and food was getting stuck and my voice was so husky everyone thought I had a permanent cold. He did another ultrasound again U2 but its had grown 38mm. The lovely nurse arranged a barrium swallow test, as sadly I was made to feel that this was all in my head. That test in fact confirmed I had a ubend in my throat as the nodule was pressing on it causing the compression. It actually ended up growing 12mm in just over 12 months but still considered U2 (I do have family history of FAP).

My case was cancelled over 11 times to be discussed in MDT and in the end it was bypassed and referred to ENT. Sadly I was once again made to feel like I was making a fuss and even told my voice change was due to drinking too much tea. He popped me on the waiting list and advised cancer patients are priority and wasn't sure how long the wait would be.

I had an episode when I choked and even went blue, so I went private. Then consultant was lovely and after looking at all my scans (only ever had an ultrasound) he was happy to do the surgery without further tests aside from a CT scan. 

I had a hemithyroidectomy on 5th August, on the 22nd August I received the news that of the 52mm nodule, 35mm was cancerous. My thyroid itself was also 5cm by 6cm and was going under my collarbone as well as just started to touch my windpipe. 

The part I can't seem to pass it being told its benign and can never become cancerous to it is cancer! In one appointment I was told I had cancer but no longer have cancer but will be monitored for cancer for the next 5/years. Also having this cancer growing in my body for over 4 years and not feeling too unwell. Then of course comes the 'what ifs' 

I also recently found out I have Hashimotos, auto Immune Pancreatitis and cysts in my liver and one on my left ovary. 

I've been around cancer before having lost a friend and my dad but I am struggling with navigating this. 

Thanks for reading it you got this far! 

  • Hey. As somebody who had papillary thyroid cancer 6 years ago, it isn't what one normally imagines when one hears the word cancer. It's almost never life threatening and doesn't require ongoing treatment. Nor does it normally make one feel unwell. It is usually found accidentally or sometimes when somebody has a nodule and they just check in case.

    Odds are you're done with it and that problem is solved now. I realise the other health problems remain.

    Recurrence is a possibility but if it happens, they just take out the lymph nodes that are affected and odds are that will be that. Again, unlike many forms of cancer, recurrence doesn't mean it's more serious than the original situation.

    I know it's hard to avoid thinking, "but what if I am one of those rare cases when it comes back outside the neck?" And it sounds like you had a particularly horrific situation where the thyroid cancer actually was causing symptoms. In my case, I just went to the doctor for something completely unrelated and he noticed a nodule on my neck and said it should be checked out just to see what was causing it and it turned out to be thyroid cance - a 10.5cm nodule of which 6.7cm was cancerous!! And absolutely no symptoms.

  • I know I'm lucky with regard to the type, having watched my Dad die of small cell lung cancer which also went to his brain and my friend of bowel cancer. I say it to people who ask if you had to pick one this would of been it, one of the good ones. Its the combination of the complex medical conditions and that the Hashimotos is the likely trigger for the cancer. 

    I still obviously have it so the nervousness is more around it attacking my remaining side. A few have said why didn't you just have it removed but not sure many realise what the thyroid does. 

    I am currently in TSH suppression to try and reduce that risk. 

    Can I ask if you had any weight issues and if so what you did if anything to counter it? 

  • Nope, didn't have any weight issues or any issues at all with the medication. I hope it will go equally well for you.