Post surgery thoughts

Hi Isabel

You are going through exactly what most people go through. You've DONE the surgery, you're recovering well and then along comes this massive dose of 'DOUBT' and 'WHAT IF?' Your imagination goes into overdrive and, for some strange reason, it doesn't spend its time thinking about lying on tropical beaches having a spectacularly wonderful life. Instead, it niggles and nags and makes you ask yourself how bad it could be. And once you've done that, it dollops an extra dose of even worse on top.

Forgive me that I'm not familiar with all your details so I'm not sure what you had or how big it was. 

RAI used to be given to just about everybody and it was quite a blunt instrument. These days, unless the doctors have good reason to expect metastasis, they either don't give it at all (typically for teeny tiny cancers) or they give a much lower dose than in the past. 

What you describe reading about somebody's husband is good stuff. When thyroid cancer spreads, it usually retains the characteristics of thyroid cells (this applies to the papillary and follicular variants most of the time). This means that wherever those cells go, they'll suck up the radioactive iodine and glow on the post RAI scan.

That scan isn't very precise. We like to give the impression of people's lungs or distant metastases lighting up on the scan like a Christmas tree - usually, it's nothing like that as the scan's just a fuzzy mess and takes a lot of interpreting.

The good news - and believe me, even the bad stuff has good bits in it - is that IF other areas light up on a scan, by definition, they're doing that because they sucked up some iodine. And that iodine is going to work already killing the thyroid cells.

When there is spread identified, people may get further doses of RAI to zap them again. But seeing a glow elsewhere means that you might have some spread but it's already committing its own suicide by drinking up the iodine. 

Specialist nurses? Good luck getting one of them. I asked and was assigned a contact from the Head and Neck cancers section at the local hospital where I was going to have my RAI. I don't want to be dismissive, but I had to explain RAI to her, not the other way around, and she was the type to draw smiley faces in the little circles over the letter I when she wrote things. Unlike most cancer types, we really do struggle to get nurse support. I wish it wasn't true, but we are pretty much left to get on with stuff ourselves - all the more reason why groups like this are so necessary. 

Thank you for your reply. I really needed that.

Papillary - that's what I had and probably should have mention at the first post.

They never mentioned the size of the cancer but I had a lump on my left side of neck and all lymph nodes plus thyroid were removed successfully. 

I know that prognosis are good with thyroid cancer. It's just feels like my mind doesn't want to get that info in and instead it chooses to remember that BBC radio presenter is dying of (different type) of cancer and I instantly think that will be me.

I've never asked for specialist support and I would probably not used it anyway as I am a woman that wants to deal with everything by herself and don't like to share. 

The reality of having cancer is that statistics can mean totally different things to differing people.

Tell an optimist that they have a 1% chance of survival and they'll tell you "I have as much chance of being the lucky one as each of the other 99 people. So I can get through it"

Tell a pessimist they have 99% chance of survival and they'll think "Well, I'm obviously going to be the one that doesn't make it".

This is why statistics are pretty rubbish when people are involved. 

You are far more likely to be absolutely fine than to not be. Hang on to that.  You are young, you are most likely going to look back on this in 11 years time (that's where I am) and wonder why the fear had such a hold over you. But only by living through it will you gain that wisdom (Oh, just listen to me claiming to be some wise old thyroid owl!)