Hi. I had my thyroid removed in May after being diagnosed with Thyroid cancer, and received RAI in June.
Over the last couple of weeks I've been having pain in my jaw when I eat, and some occasional swelling. At first I thought it was an absys but the dentist has confirmed it isn't. The pain goes off after a while but has been getting gradually more frequent and more intense.
I have mentioned this to the cancer nurse and she wasn't too concerned, but advised me to drink more fluids and it's likely a side effect of the RAI whilst that continues to do its job. However it's almost been another week and I am getting more and more concerned that it could be a sign that the cancer has spread to my salivary glands.
Has anyone had a similar experience?
I'm presuming your gamma scan didn't show any spread to your jaw? When was the last time you had a blood test? Did it show any increase in TG?
If both were clear, then you can probably rule out spread to the salivary glands.
So the next question is, how do you know the pain is coming from your salivary glands? Have you been to the GP to get checked out?
Your nurse could be correct. RAI works in the body for 6 months after being taken. Salivary glands can be damaged by the RAI if they aren't flushed out enough. Did you eat sour sweets after the pill and did you drink at least 2 litres of water a day while in isolation? Even if you did these things, it's not a guarantee they won't be damaged sadly, it just increases the odds of them being OK. Though usually, any damage just results in a lack of saliva rather than pain and swelling.
One thing that does happen to the salivary glands, and is unrelated to the RAI, is that they can produce stones. It could be that when you're eating, you produce saliva, the saliva pushes the stone into the end of the tube and blocks it, this then causes swelling as the saliva behind the stone can't come out. A good way to get rid of stones, if you get them, is to suck on lemons. The amount of saliva produced, pops the stone out of the tube, just like passing a kidney stone.
No harm in sucking on some lemons tomorrow, but I'd def get an appointment with your GP for the end of this week or sometime next week to get it checked out if you haven't already.
I had RAI in August and over the last week have had awful toothache, I have been to the dentist and my teeth are fine. It must be the RAI working. After my thyroid and lymph nodes were removed I had awful toothache, which was more painful than the surgery. My dentist told me I would have had a tube down my throat during the operation which would have gently vibrated off my tooth for 61/2 hours, aggravating my teeth.
Its easy to forget that the treatment will carry on working for 6 months.
Hope your pain goes soon
Thanks for your reply Lass. I went to the gp yesterday and he prescribed me some antibiotics to see if it makes a difference and told me to go back in a week if not. I called the cancer nurse again and she says it sounds like it's a persistent blockage in the salivary glands and reminded me to drinks lots and keep massaging it. Thankfully it's not been anywhere near as painful today.
I hope your pain goes away soon.
The pain I've been getting is similar to a toothache /earache. The pain starts directly below my left ear. I also went to the dentist and she confirmed all is OK. Even did an xray to rule out an abscess.
Perhaps you have something similar, so I pass on the advice I've been given... Drink lots and massage the pain. Also, might be worth checking with the gp.
Glad you saw the GP, even if they have just thrown antibiotics at the problem. Lol
If your nurse is saying it's a persistent blockage, it could be one of those stones I was telling you about. They're pretty much the only thing that can block a salivary gland from the inside. Did you try sucking on a lemon? If not, guess what.......? Lol
Hope it all works out quickly for you!
I just wanted to mention TMJ, I’ve suffered for years from it, goes away then comes back with a vengeance, just been to the dental hospital and they’ve given me exercises and coping strategies, was really bad after my op. Causes pain in my glands, teeth, earache, at some points feels like one side of my face is drooping, just something I thought I’d mention Incase they don’t get to the bottom of what’s causing your pain.
All the best
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