Thyroid cancer

A place for people affected by thyroid cancer to support one another, ask questions, and share their experiences.

Shocked

Potter37
Posted by

Hi guys ,I was was diagnosed with follicular thyroid cancer yesterday lunchtime after a hemithyroidectomy on the 11th November for a large cyst , the tumour was 5cm and I am awaiting completion surgery which will be within 2 weeks ,I waited just short of 6 weeks for the results

I am so shocked by it all it’s very difficult to take in ,I was told that it was just a cyst and I had no need to worry ,they were going to leave me another 6 months as they were sure from the U/S and biopsy that I had nothing to worry about 

I was told on the way to surgery and a day after that it was just a cyst and now I am so shocked to find out it’s cancer 

I don’t know the staging or anything as I was rushed out of the room with a Macmillan nurse and sent for a pre op ,they just said it was follicular thyroid cancer and 5cm

It started in July when they found a lump during an mri looking for something else 

I am so confused ,how can a 5cm

tumour be missed? Is this classed as big?

Sorry if it doesn’t make much sense ,I am 38 male from the uk

Any advice would be greatly appreciated 

Thanks

Carl

latchbrook
Posted by

Hi Carl and Merry Christmas!

I'm sorry to hear that you've recently been diagnosed with follicular thyroid cancer after being told previously that you had a cyst.

I haven't had this type of cancer but I do recognise only too well the shock of being diagnosed with cancer when it was the last thing you expected. 

I can't answer your questions but by replying to you it will bump your post back to the top of the first page where, hopefully, someone with the right experience will see it and be able to help you.

Wishing you all the best

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

Potter37
Posted by

Hi Latchbrook,Merry Christmas and thank you for the reply 

All the best

Carl

PhoenixRising
Posted by

Hi Carl

So sorry to hear you are going through this. I hope you managed to have a nice Christmas Day as I know its so hard to put the worry out of your brain.

I had a similar experience in that when they took my thyroid out [after an inconclusive FNA} they said it had a tiny cancer in. Nothing to worry about, no RAI. The only problem was I still had a massive lump on my neck they hadn't removed! which I was panicking about. Took me 3 weeks of badgering for another FNA and to get them to take me seriously. They were almost patting me on the head and saying "well well do another FNA if it will make you happy!" The next FNA revealed a massive cancerous lump {as I had told them} and they went into panic stations and got me back in again asap  for a full neck dissection to remove what they had missed. Then ended up with RAI and the full works.

So I guess Im just telling you this to say you aren't alone, and it is a shock when your diagnosis suddenly swings from "its all fine, dont worry!" to panic stations. 

I think FNAs and ultrasounds are not very sensitive and sometimes miss stuff. I think in my case, people mis reading the pathology report didn't help.

I look at it as a good thing as it means they focus more sharply on it when the diagnosis has changed. In my case it meant a more extensive neck dissection which found another little cancer that would probably have been missed if they hadn't ended up being more thorough. So it all worked out for the best.

It is very frustrating though. The good thing is that they are now pulling out all the stops to get you in asap so you will soon have the cancer out and can focus on recovery.

Wishing you a peaceful and relaxed Boxing Day as much as possible.

x

Thyroid cancer warrior

Potter37
Posted by

Hi Phoenix Rising,

Thank you so much for the reply ,Christmas was ok it’s just difficult to get my head around it really,if I am honest I don’t think it has really hit me

I have spent the last 6 days comforting my family about it and telling them it will be ok it’s just really odd ,

it’s hard to not think about if it’s spread etc

I am sorry you have been through the mill too and I hope you had a lovely Christmas and are on the mend 

Thank you again for taken the time to reply

Carl

PhoenixRising
Posted by

No problem. Im glad xmas was Ok. Yes I do think you stay in shock for a while as it doesn't seem real and you end up looking after everyone else whilst internally going "WTF!!??" I think thats a very normal reaction .Macmillan Nurses are very good at support so make sure you make use of that.

You take care of yourself and hope everything goes smoothly for you in the new year and you have a nice boxing day

xx

Thyroid cancer warrior

Potter37
Posted by

Thank you so very much ,all the best 

Carl 

JamStevens
Posted by

Hey Carl

I'm so sorry you are going through that. I'm going through something very similar at the moment, only my surgeon had just performed the lobectomy and I need to wait to hear if it's malignant. 

Hang in there. Sorry I don't have any useful insight, just wanted to say you're not alone. It's hard.

Potter37
Posted by

Hi Jam,

Thank you for the reply,you are right it’s so hard to function knowing what’s going on but we have just gotta keep going ,let’s hope you receive the right results when they comeback 

If you need someone to talk to don’t hesitate to message me

Enjoy the rest of Christmas and have a great new year try and stay positive 

Carl

Lass
Posted by

Heya

How are you doing now? Got your head around it a little more now?

Any word on further treatment?

Lass

xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

Potter37
Posted by

Hi Lass, it’s hit me now to be honest ,had the other half removed on Monday ,they said I would need radio iodine and I will be passed on to an oncologist,just have so many things going around in my head ,hope you are ok and thank you for the message 

Carl

Lass
Posted by

Heya Carl,

Well, we've all been there, so we get it!

Anything in your head that you'd like to talk about, more info on, or questions answered then you know where we are!

Hope you're managing to sleep ok on your slope, and are taking care of yourself!

Lass

xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

Potter37
Posted by

Hi Lass , it’s just trying to understand the invasive bit of the capsular and vascular part ,they have started me on 125ml of thyroxine ,is that standard? Head feels all over the show 

Potter37
Posted by

Sleep is weird ,I feel shattered but don’t sleep at night but manage an hour in the day 

Lass
Posted by

Heya, 

So, if you think of the tumour as a pea, the shell of the pea the capsule, and then the pod of the pea the thyroid. Sometimes the tumour can eat away/break through the capsule and into the thyroid in varying degrees. It will then sometimes escape the thyroid too, and start trying to attach to other things. When the word vascular is used, this is talking about the veins running through your thyroid and neck.

So what have they said exactly about invasion? 

As for thyroxine, there isn't really a standard. It's sometimes based on weight, sometimes folks are just started on 100, it really varies from doctor to doctor. I was started on 250. Lol. So at 125 I'd say you're good for a starting point. Just stick a note in your diary to get a TFT - thyroid function test - done 8 weeks from this week.

And did someone explain, or did you read here, how and when to take your thyroxine?

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh