Apparently my thyroid nodule has been around for at least 8 years

Yes that is completely possible. Most thyroid nodules are very very slow growing and the majority of these are benign. If everyone had their thyroid scanned there would be a lot more incidents of people being diagnosed with nodules cancerous or not. Its so slow growing is why it goes undetected.

Hi my nodule was around for over 12 years! It was very slow growing and I noticed it straight away. It had been ultrasound and biopsied at least twice a year due to my paranoia and I was always told it was benign. I got it out due to the size it had grown to and low and behold then they discovered it had papillary cancer. I wish I’d had it taken out when I first noticed it but I was assured it was fine and didn’t want to cut my neck open for no reason! Wish I could go back now. 

yes MissAnabel  that is exactly what I am thinking - whilst its been there for at least 9 years I didn't know about it, but now I know my gut feeling is just to have it out straightaway and not mess about with watch and wait (and worry)….  How big was it when you finally had it out (mine is 2cm now)  and does that mean that you have to have the whole of your thyroid removed now they have found papillary cancer?   Mine has the characteristic or papillary (to look at) and if there is any cancer in there I just want rid asap.  

Ah yes mine was 2cm when I found it but it grew to apparently 7cm (every time I talk to someone it seems it gets even bigger! They told me 5cm at my deciding time to take it out but apparently now iwas 7!). I was pregnant though and they aren’t sure if the cells could have changed in pregnancy but I just feel it was always Cancer. Plus my version is actually papillary with follicular variant wch they said doesn’t show up in ultrasound or biopsy. I’m still a bit bitter and annoyed as I trusted them but trying not to be! I’m not into scaremongering and do think they do all they can but somimes we are only human and people make mistakes. I would go with your instinct. I have had all my thyroid removed and waiting on RAI. To be honest the ops have been absolutely fine. Just make the desion you feel is right for you. If you need to chat just message me  

sorry about all the emojis they just appear! 

Hi ladies I feel your pain! I had an incorrect biopsy 6 years ago and had it picked up the cancer then I would still have half a thyroid - does make me angry thinking about it. Plus like T I was pregnant when it was finally diagnosed so that put a real dampener on the phone pregnancy what with two operations and the like. Now waiting for my radioactive iodine - oh the joy! But I am so glad I only have papillary thyroid cancer, that is what I tell myself anyway! Good luck to you both xx

Ah so you will have a little one Yanbu...how big did your nodule get? Apparently it is a ‘very good’ cancer to get. Although that does make me angry too because it’s ALL very scary when it’s happening to you! But I’ve found this site to be really reassuring and at the very least help me to realise it could be so much worse. Hope you don’t have long to wait, I’m hoping to be in for my RAI in about three weeks. Did your pregnancy prompt diagnosis? Just my nodule seemed to get so big in the third trimester I was having trouble breathing but everyone I saw assured me it was because I had no room left to breathe with such a big bump but I just knew it was compressing my airways in my throat. 

Hey Yanbu,

Just wanted to say that had your biopsy 6 years ago shown cancer, you wouldn't still have half a thyroid.

6 years ago, even a little over 2 years ago, any sign of cancer at all resulted in a completion thyroidectomy and then RAI. Leaving half in on an observation basis is a fairly recent development.

So 6 years ago or whenever your cancer was found, the end result would actually have been the same for you. So hopefully that will help dissipate the anger you're feeling at the moment. 

Lass

Xx

Hi MissAnnabel what happened was we were trying for a baby and I noticed the nodule was starting to be noticeable when I swallowed so went back to the GP. Still didn’t think it was anything sinister after the previous all clear error. Between biopsy and results I found out I was pregnant. Luckily I have a fab surgeon in Leeds and the first thing she said when I told her was Congratulations. I was worried she was going to say Oh dear! I can’t remember exactly how big it got but I think it had grown from 4cm to 5.5cm in the 6 years between the first and second biopsy. Not massively in the grand scheme of things but the surgeon did warn me the first time she saw me about a year ago that she thought it would be cancer. She wanted it out ASAP but we had to wait till after 12 weeks to start surgery to make it safer for the baby (foetus!)  

I’ve just started the low iodine regimen in anticipation of my RAI in 2 weeks. It’s a bit easier than I thought but I’m already craving cheese and mayo! Gorgeous little baby is 4.5 months now. Am so dreading being apart from him!!!

this is a lovely site isn’t it? Just discovered it yesterday. How come you don’t know when your RAI will be?

Jules xx

WOW Lass you’ve made me cry - that’s oddly the best thing I’ve heard about my cancer ever! For me the toughest thing is getting used to being dependent on meds for the rest of my life which is so tough when I’ve previously felt so strong. Now I feel very, very vulnerable! Suddenly things like medicine supply crises scare the living daylights out of me. To know that the outcome would have been the same either way is such a relief that I don’t need to be angry anymore! Thank you xx

How do you know so much about thyroid cancer by the way? I’ve noticed you’re a litany of knowledge!

Hey Jules,

First off.... I'm sending you great big hugs!! You cry away and just let it all out, there's a LOT of surprise emotions that come along with a cancer diagnosis!

Are you having your RAI in St James' then? If so, it's lovely there, and you'll be well looked after. That's where I've been having all my treatment, with my hemi and TT ops at the LGI.

As for the meds, the thyroxine taking will soon become second nature. As soon as you open your eyes you'll reach for your pills and knock them back without registering it or needing to think about it. Your strength will come back, it's just having a wee holiday at the minute. As soon as things get back on an even keel and you're out of the unknown, then you'll find it again bit by bit. 

As for me, I'm a complicated thyroid cancer case, and I was diagnosed 6 years ago. So, I'm the sort of person who will look into everything and try to learn as much as I can about whatever is wrong with me. That way, I can ask intelligent questions and have decent chats with my Drs, so I can fully understand what's going on. It also means that if they ask me to make a decision about my treatment, then I go into it informed on what it means if I do x, or if I do y.

I've also been on site here for a couple of years too, so I've learnt from other people's experiences, operations, diagnoses, etc. It's amazing how much treatment and experiences vary from hospital to hospital.

Lass

Xx