Not sleeping!

Hey lulu, 

Sorry to hear about the situation you find yourself in, but I'm glad you found us! 

Just to check, I presume the CT showed it on your lungs rather than while they were operating they went right down and looked at your lungs? Because ENT shouldn't be heading that far down as that's thorassic territory. 

Also, do you know what sort of thyroid cancer it is you've got? 

Mine has spread to my bones, so I've been in a similar situation to yourself. I've had 4 RAI so far, and we've got rid of most of it. So ask whatever you like and we'll help where we can.

Lass

Xx

They found the cancer on the lungs on my ct scan. 

I have papillary and follicular cancer. Do they both spread? 

I haven’t been told the full report of the ct scan yet, because I had the ct scan in swindon and my operation was in oxford. Oxford only had images of the scan. How go they pick up it’s on your bones?

Thank you

Well, aren't you a greedy one getting two types! Lol.

Regarding spread, it's not that both will spread, but both do have the potential to spread. There's a big difference there. Usually, papillary spreads to the lymph nodes - if it spreads, while follicular tends to prefer to spread to distant sites. But of course, that isn't always the case and there will be some who buck the trend, like me, but that's commonly how it happens, if it happens.

How they find it in the bones can be different for everyone. With me, they didn't know it had spread until they did my RAI. At the end before they discharge you, they give you a WBS, whole body scan, or gamma scan. This looks for radiation, and will show the doctors where the RAI has been absorbed and therefore if the cancer has spread. My scan, I lit up like a Christmas Tree! I was riddled. But for others, there's been a couple of people who went to the doctors with pain somewhere. After tests, they discovered it was thyroid cancer. So they found the spread before they found the original.

Lass

Xx

That’s what my family keep saying! It’s uncommon for someone my age to have both. 

I am worried about if  it has spread anywhere else in my body. It came back and spread to my lungs so quickly! 

Feel like my life and my family life has been put on hold for me to have my treatment. I feel like me and family are being punished. 

I hope to not make you feel less 'special' but I don't think the combination of the two types is all that rare. And mostly, once the stuff is out of your neck, it doesn't really matter too much what it was.

We get a lot of 'follicular variant of papillary' or vice versa but a bit of both isn't especially rare. For now it's simply a case of 'it is what it is' - or rather since it'll soon be out, it was what it was - and they'll get zapping your lungs and watch out for any other bits by tracking your thyroglobulin after the RAI treatment. Try not to let the double diagnosis get you down - treatment is pretty much the same regardless of the specifics.