Can you help me understand this diagnosis?

Hello there, you've come to the right place for support and to find others in a similar position to you , so welcome!

U might also want to "Ask an expert" ( listed under cancer groups - experience) or ring the helpline 0808 808 0000 8am to 8pm for advice  re your diagnosis 

Good luck for Sept 12

Hey there Kirsty, (Sorry, I'm simplifying your username! Lol)

Welcome to the group, though I'm sorry you find yourself here.

I'm afraid asking the experts is no good, they always just tell you to speak to your doctor for more information on thyroid cancer etc.

I'm afraid that what you've got at the moment are findings, not a diagnosis. So the ultrasound you had graded your nodule as a U5, which means it looks suspicious and they need to do an FNA on you for more details. The Thy3, which is often shortened to T3 when talking about FNA results, says that once they got the cells under the microscope, they are sitting on the fence about what it shows. It could be cancer, it might not be cancer. 

Folks who get a T3 result are sometimes offered a choice, either to sit and wait then redo the FNA in 3 to 6 months time to see if they get a different result. Or take the half with the nodule out, put it under the microscope, then see what they are dealing with. 

Now, the interesting bit is it says you have nodal metastasis. Just check that's definitely the spelling of it. Because that's basically saying that one of your lymph nodes has something in it too. It'll be this bit that has your consultant so sure that it is cancer that you've got. But nothing is yet confirmed, because lymph nodes can swell and they fight off infections and all sorts regularly, which would make them look like they have stuff in them.

So a question, do you know what operation it is you're having? Hemi thyroidectomy, lobectomy, total thyroidectomy, or any of those with a neck dissection?

You'll be fine with the operation as you go in, get on the bed, you're chatting away, then next thing you know you're in recovery and it's done. 

Definitely nothing to stress about, promise! 

Lass

Xx

Hi there Lass,

Thank you for your reply.

I will be having a total thyroidectomy and left neck dissection, so that's everything gone right? 

What sort of treatment will I need after that? Obviously life long hormone replacement medication, they have mentioned possibly a bit of radiotherapy and possibly RAI treatment which scares the crap out of me. 

I just want it done and over with xx

No worries! 

And yes, if you're having a left neck dissection then while they don't know what type of thyroid cancer you have, they're pretty sure it has already spread to the lymph nodes. However, that's not anything to worry about as with thyroid cancer, it doesn't usually change the prognosis. 

So first off, some tips for recovery. You're going to need what I call a pillow slope to sleep on once you're out of hospital. You're going to want to lie at roughly the angle of the top of this arrow... >. So find some soft things to build up, then as you feel better and heal, you can remove pillows until you're back to however you normally lie. Also, when you sit on the couch or chair etc, make sure your head is supported to give your neck a rest. 

I don't know what your living situation is, but for at least the first week you're going to get tired very easily. So if you need to, try and either prep a load of meals before the op so they just need defrosted and reheated, or buy a load of ready meals. You're not going to want to stand and cook. Also, if you have small kids, you aren't going to be able to drive for at least a month because you won't be able to turn your head fully, you also won't be able to pick up anything too heavy without it hurting/possibly doing yourself damage. So have a think if you need help with any sort of childcare.

Pain killers like Ibuprofen and paracetemol, start stocking up now. That's probably all the pain relief you should need, but different people feel pain differently. So if you are taking them regularly and are still in pain, don't be afraid to talk to your doctor about it. But do take them regularly as the packet says, don't take them reactively when you're in pain. Otherwise you don't get the full effect. 

Finally, with a neck dissection the average recovery time is 6 months. You might heal faster, it might take longer, it depends on your surgeon and what they need to remove from where. So after 2 or 3 weeks, you should be healed enough for some physio and massage. So go to your GP and ask them to either refer you to a physio, or to give you some exercises to do to help you get your full mobility and range back, or to retain it as things heal. The massage will help to keep the scar smooth, and help drain any fluid that might collect around the wound site. 

And yes, a total thyroidectomy means your whole thyroid is removed, while the neck dissection means they are taking out lymph nodes, but just on the left side of your neck. They also won't know how many until they are in there and looking at them all. They'll remove all the ones that look dodgy, then a few more as well to make sure there's a clear margin. Then everything will be sent to the lab for testing, and the doctors will get a report back telling them what, if anything, was in the thyroid, as well as what was in the lymph nodes, and how many nodes of the ones they took out were afflicted.

Treatment afterwards does involve taking thyroxine every morning, as soon as you wake up, then waiting a minimum of 30 mins before taking any other medication or eating any food or drink. That will be for the rest of your life. Also for the rest of your life, after everything else is done and dusted, you'll have 1 blood test a year to check that everything is tickety boo.

If they do confirm it's cancer, it's highly unlikely that you'll need radiotherapy. Barely anyone with thyroid cancer gets that or chemo. RAI, or Radioactive Iodine, is the standard treatment, and it's classed as a targeted therapy. One of the jobs of the thyroid is to mop up excess iodine in the body. So by flooding the body with radioactive iodine then the thyroid cells suck it up like a sponge, while the rest passes out in your sweat, urine, and faeces. Then, all those thyroid cells that sooked it up, wither and die. For most people, even those with lymphatic spread, one dose of RAI is all they need and they're done. But it's definitely nothing to be scared about.

I'm a super special squirrel, because I've had RAI 4 times so far. So I can def say it's nothing to be worried about. But we can go into RAI details more if they confirm you've got thyroid cancer and after you've got a date set for it. Otherwise it is just too much information all in one go. So for now, focus on the surgery and planning for that. One step at a time!

Lass

Xx