I am still reeling from everything.
I found a lump end of Oct, doc said it was probably a cyst. Ultrasound found 2 tumours (3cm and 1.5cm) and FNA revealed it is cancer. I was informed it was papillary thyroid cancer by telephone on 5th November. Then the waiting began
I finally met my surgeon last week who wants to preform a thyroidectomy before Christmas and the RIT later.
I had my preoperative assessment this week and a check of the vocal chords.
Possible date for operation is 20th December. Is this really going to ruin my kids Christmas?
I feel bad enough burdening them with the knowledge of having a parent with cancer. We were so shocked by the diagnosis as we truly thought it was a cyst.
Amid all of this I am a teacher and struggling to focus on work too.
Welcome to the forum, though I'm sorry you need to be here.
Having an op on the 20th shouldn't ruin anything for anyone. You'll be able to do just about everything you normally do, you'll just need to sit down and rest your head more than normal.
Alternatively, you could always postpone it and rearrange the op for the new year if you were concerned about it.
I'm just wondering what the RIT is you mention though?
Thanks for the info.
I like the idea of a relaxed Christmas just maybe no crispy parsnips for me.
Still getting used to the acronyms I thought RIT would be Radioactive Iodine Treatment.
My surgeon is very much it is nothing to worry about everything, probably because he deals with it daily.
Is there any top tips for when I get home? Good foods to soothe and ones to avoid?
Ah ha! Lol. No, not RIT. Randomly, it's RAI. I wouldn't be assuming you'll be having it though, because with the size of your lumps, you're actually below the threshold to automatically get it. So it'll be down to what the pathologist finds once it's out and sent to the lab. So you might get to avoid it completely.
To be honest, at this stage, it really is nothing to be worried about. That is MUCH easier said than done, I know, but it's honestly true. Generally, once they've whipped out your thyroid, or half of the thyroid in some cases, that's you cured. It's usually an easy one to treat and get rid of.
Tips once you're home, there are a few.....
As for food, eat what you like. The only thing that's happened to your throat is you've had a tube stuck down it to help you breathe. So eat and drink as normal, as the worst it should feel is like you've got a sore throat from a cold but I personally was fine.
You'll be grand, and just keep asking questions and we'll help where we can!
Thanks I will get the spare pillows out the loft.
Your comments are reassuring, there is not a lot of info on the Internet other than scary stories.
My surgeon has said I will be having RAI about 6 to 8 weeks after.
I am in the same boat as you. It’s comforting to know we arnt alone. Found a lump end of Oct, ultrasound and FNA a couple of weeks later and diagnosed with thyroid cancer on 22nd Nov. I had my surgery today, a total thyroidectomy. Just to reassure you that I feel absolutely fine and going home tomorrow, all being well with calcium levels. I have a bit of a sore throat but nothing major and im eating and drinking normally.
I’m sure the surgery won’t affect your Christmas, if anything it will be a relief. I feel relieved, but still expecting a long road ahead.
I feel exactly the same as you, I keep apologising to my family for ruining their Christmas ️ I also felt the same with work and couldn’t face it so I’ve had the last 4 weeks off already. Physically I’m fine it’s the emotional effects and I felt as though I couldn’t offer support to my patients when I felt anxious and vulnerable myself. That sad this past couple of weeks I’ve felt more positive and consequently happier. Good luck my lovely and keep us posted
And yes, there are a few people who have been told the same thing but it's just that the consultants have a speech that they haven't updated yet.
It used to be that any sign of cancer, then everyone had the full thyroid removed and then were given a medium dose of RAI. However there has recently been a number of studies carried out that show this approach is a bit of overkill. So now, if your tumour, not lump, is over 4cm in size then you automatically get RAI. If your tumour is less than 1cm in size then unless there's something odd going on, then you don't get RAI. When you're in the middle, they have a discussion at an MDT meeting once the pathology results come back, to decide if RAI is needed or not. Also, the doses have been massively reduced too. So where a mop up dose used to be 3 or 3.5, it's now down to about 1.
So we've had a few people pop in saying they're going to have RAI 6 to 8 weeks after their op. But actually once the pathology report comes back, they don't need it and aren't given it. Or the pathology shows it's prob wise if they do have it. Alternatively the doctor turns around and says that they don't mind one way or the other, and it's down to the patient to decide if they want the treatment or not - which I personally think is the worst position to put someone in!
And yeh, don't Google anything to do with thyroids, thyroxine, or thyroid cancer. You'll find almost nothing good, lots of exaggeration, and even more rubbish. Lol.
Oh! One thing almost no-one is told by the ward nurses!
Take your thyroxine as soon as you wake up with tepid water. Don't eat or drink anything else, including other medication, for a minimum of 30 mins though 60 is better.
If you need to take Calcium, you need to take it a minimum of 4 hours after your thyroxine.
If you need to take Iron, you need to take it a minimum of 6 hours after your thyroxine.
This includes multivitamins that have calcium or iron in them.
Also, you can't take cold and flu products that contain pseudoephedrine or phenylephrine. So no more Lemsip or Sudafed etc.
Wow. That is great news so fingers crossed I will be a lucky one and not need it.
Google has given me sleepless nights so I am avoiding it now. I should have come directly here in the first place.
Thank you so much x
i had a total thryoidectomy and 31 lymph nodes removed in April.
It did take me about 2 weeks to start to feel better. For the first week I slept most afternoons. I found eating a bit more uncomfortable and ate a lot of soup and rice pudding, but I go off food very easily.
i did wear a zip up hoodie which I found much easier to put on rather than jumpers, and built up a scarf collection. That was partly because I didn’t want everyone to know.
The operation won’t ruin Christmas but expect to be slightly tired and not able to help as much. I couldn’t hoover or lift baskets of washing fir a while.
Dit with your feet up and let the family spoil you.
Thank you for your informative post.I just want to ask why we can't take cold and flu products that contain pseudoephedrine or phenylephrine? I know calcium and iron tablets but I have never heard/read about flu tablets
The two drugs I mentioned are known to increase heart rate and put more stress on the heart. People on thyroxine, especially those who have had thyroid cancer and so are on higher doses of thyroxine, often find that they get palpitations and increased heart rate. It's one of the reasons why our dose needs to be monitored so carefully, as heart issues can arise from doses that are too high.
So the combination of the thyroxine and the pseudoephedrine/phenylephrine can stress your heart out to the point of giving you a heart attack.
So they generally advise that anyone on thyroxine avoid products containing those two and use other products instead.
Thank you for the reply. I'm actually taking flu tablets when I feel the flu symptoms. I didn't experience any palpitation but notice my heart rate increases from 70 ies to 90 ies.. and back to normal when stop using it. I had T.T. in July 17 and am on 125 mg for 4 days and 100 mg for 3 days levothyroxine. Next time,I'll think twice before using flu tablets.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2020
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: 668265007