Hi,

I've already posted a couple of time in the pre diagnosis chat. I finally got the confirmation I have cancer yesterday after months and months of a really tough time. 

I'm posting here to see if anyone at all has had the same as me. It seems to be pretty rare. I was looking for someone to chat with that I could ask questions to see what their experience was like. 

I'm unsure what questions to ask after my next set of tests.

And failing that maybe once I have been through it and someone else is in my shoes this post will be here and I can maybe offer that advice eventually. 

I found a lump on my lateral right side of neck months and months ago. I thought it was probably just a reactive swollen  lymph node and ignored it. But after 3/4 weeks it was still there and my partner insisted I go to the GP. 

The lovely nurse practioner was great said she didn't like the feel of it and given I had not jad any infection recently she would refer me for an ultrasound. She also took bloods and they all came back clear.  A GP then overruled her saying I didn't need an ultrasound after my bloods came nack clear.My partner (who's mum sadly passed from cancer) wasn't happy and I am very lucky to have access to private healthcare through my work so booked an ultrasound. That happened within a week. They scanned my neck and immediately put me back to NHS on the 2 week suspicion of cancer pathway to ENT neck lump clinic. 

I was then seen by a registrar,  who did a quick camera up my nose, and I was given a FNA and core biospy on the same day. 

It was at that stage  I was first told it could be something called a branchial cleft cyst.  As the lump was cystic in its nature and that was the most likely diagnosis but they couldn't rule out something else. But we would wait for biopsy results. 

I waited another 2 and half weeks and had to chase several times to be given these results, when I got the call I was told they were inconclusive,  but she really did think it would be a benign BCC. That she would go ahead and schedule day surgery to have it removed as even though they are normally benign,  they can cause other issues. 

Then again she was over ruled by the senior consultant saying they actually wanted a CT scan done first.

So I waited weeks for that, and then weeks for the results even though the results were done 2 days after my scan, I had the scan done at another NHS trust and it seems they sent my results back on an incorrect system and no one knew they were there. Anyhow once they were found I was told it was absolutely a branchial cleft cyst,  and did I want surgery or not. I (thank God now) said yes please just take it out,  then I'll not be worrying. 

I was told I could wait up till 12 months for surgery. Then to be told less than 6 days later that I had actually been booked in for surgery in two weeks time.

The day of the surgery was the day I met the consultant that had overuled the registrar twice, and he explained the reason I was brought in so quick was because these BCCs can still be cancer,  but that it was very rare. After surgery he came to see me in ward and said it looked like a nice clean cyst and he was pretty sure we were all good and that histology would be done on it and he would write to me with the clear report..... 

Fast forward 2 weeks after surgery, I get a phone call. Being asked to come in to see him in a face to face appointment to discuss my results. The appointment was a week later so I called back obviously very concerned and asked if I could possibly be called ahead of that. He did call. Yesterday. 

The wall lining of the cyst contains thyroid tissue, and in that tissue is Papillary thyroid carcinoma.  

So the stage we are at now is, identifying if this has actually migrated from my thyroid,  and I actually have thyroid cancer.He thinks they may have missed it on my original scans as they were focusing on the BCC. Or has it actually only been in the cyst. That it seems is very very rare and that medical experts actually disagree if that even is a real thing or not. Some say it must always have come from another primary site. 

Next steps back for another ultrasound to see if they can find a tumour on my thyroid. Then there will be discussion on what treatment route I need. 

Sorry that was long. It's been the worst 5 months ever. My work has suffered,  my relationship has too, and my mental health is in the pan. 

I'm just glad that I finally know what is wrong. As I knew there was something. I'm 43. I know my body. The biggest and most impactful symptom I have is fatigue.  The most oppressive fatigue all the time making it really hard to function.  

So yes. If anyone can guide me on the beat questions to ask once I have my next set of scans or even just reach out to tell me they have been through similar? 

Thanks