I'm not long finished treatment for thyroid cancer and please believe everyone when they say that (generally) the outcomes are great. My GP actually said to me 'if you had to get any type of cancer, thyroid cancer is the one you want to get because it's so curable' I've just turned 27 but was 26 last year when it happened, and I agree 45 isn't old in medical terms! Strangely thyroid modules are very common amongst younger women, not sure why.
I also had a FNA biopsy taken on the day I had an ultrasound, which came back as likely being a T4 nodule (on the scale of T1 - T5, I think this might be what you mean when you mentioned 4/5?). After both my surgeries and treatment were complete my final diagnosis was T2 and that was including it having spread to my lymph nodes. Although this is frightening now, your final outcome and diagnosis may change slightly so please try and remember that.
Because the biopsy wasn't conclusive when it was taken, I had the affected side removed in August. While the surgeon was doing the op, she was concerned about the appearance of my lymph nodes on that side so removed them too. It turned out that the nodule was cancerous and had spread to my lymph nodes, so in October I went back to get the other half of my thyroid and the remaining lymph nodes removed.
The surgery really isn't that bad to recover from. For my first surgery I was doscharged the following day, but if you have both sides removed at once they will likely keep you in longer as you will have a drain at the incision and they will want to monitor your calcium levels.
My throat was quite sore after the surgery, but a lot of that was down to the breathing tube they use during surgery. My voice was a little hoarse, but that didn't last longer than a day or two.
You are quite limited mobility wise for a while after the surgery. No stretching up, picking up things, bending down etc. I had a longer recovery time because my lymph nodes were removed at the same time, but if it's just your thyroid being removed you can be back to work in a few weeks apparently.
After my two surgeries, I then had a course of radioactive iodine. To be honest, I probably found this part the hardest as it was so strange.
Due to how your thyroid is positioned in the body, there will always be some thyroid tissue left after your surgery. The radioactive iodine is used to ablate the remaining tissue. Your thyroid naturally processes iodine that we eat, so the radioactive iodine is absorbed by the remaining tissue and the radioactivity destroys the remaining tissue. This means no more chance of any cancer cells growing back!!
There is some preparation you need to do before you have this treatment. You need to stop your medication for two weeks. At the start you'll feel fine, but towards the second week I had 'brain fog', was exhausted. Try not to have anything too much planned during this period.
The second part is starting a low iodine diet. You start this the week before your surgery. Because your thyroid naturally processes iodine, by starving the body of it for the week before, the tissue is even more 'hungry' for the iodine and soaks it all up.
The diet is a pain in the arse, I won't lie. No sea salt, no sea food, no diary, no egg yolks, no processed food (because you can't tell if it's used sea salt), no red died food (no French fancies or salami 😢), even things like stock cubes and condiments you need to be careful of because again they might contain sea salt. Generally ingredient lists don't specific whether it's sea salt or non sea salt so I avoided it just to be sure.
BUT you can still eat pasta, rice, bread, fresh meat, fruit and veg. There are some great recipe books available with online access through google. If I remember correctly one was from the ThyCaAssociation (US based) and there was a British one available as well. The American guidelines are a lot stricter because iodised salt is more common there. They recommend avoiding bread and pasta, but you will be given a list of food to avoid by your clinical team so just stick to that to avoid any confusion.
One thing I can't stress highly enough is make as much stuff as you can in advance. Because you can't use things like stock cubes, you don't want to be arsing about making homemade stock when you're withdrawing from your medication. I prepared loads of things the previous week and froze them so it was all ready to go. I used SAXA salt as I read a forum where someone had called their uk customer services and they confirmed that it was non iodised salt.
Although it sounds a total pain, try not to stress too much if you accidentally have something you're not meant to. Obviously being strict betters your treatment but it's not the end of the world if you accidentally have a little.
The radioactive treatment itself is more boring than anything. When you've taken the tablet you're officially radioactive. The nurses are not allowed to touch you (but they obviously will if you get ill or something) and there are lead barriers the nurses have to stand behind when they come into your room!! It's a little lonely as the nurses aren't allowed to hang around and chat, but I was given a laptop, there was a tv and dvds in the room, and I was allowed to take my phone in - but other health boards have different guidelines re phones so don't take that for granted. I would set up a Skype account just in case, if you don't already have one.
You will not be allowed to take anything you bring into the room back out with you. (I was allowed to take my phone back out because it is a metal iPhone and doesn't pick up any radioactivity, but again your health board may have different rules). From the moment you take the tablet you are radioactive so everything you come into contact with is then contaminated. Take old jammies or clothes you don't mind loosing (good change for a clear out!) and old books and magazines. You don't have to follow the low iodine diet when you're in there so I took snack galore and loved them after the diet the week previously!!
I had my tablet on the Monday, and was released on the Wednesday afternoon. So it's not too long!! You do have some restrictions in place when you leave, based on how radioactive you are.
In the immediate days when you leave, you can't be around pregnant women or children, can't share a bed with anyone, can't be within arms length of anyone, and should avoid being in the general public. Nipping to the shop is fine but you can't do anything like go to the cinema or pub where it's prolonged contact. For me, those full restrictions were only in place until the Friday. Then until the Monday I had to stay away from pregnant women and children, but could be in public, share a car with someone, etc.
These restrictions are determined by how radioactive you are. The less radioactive, the shorter they are. Because radioactive material is secreted from your skin, and in your urine and bowel movements, you can help reduce the levels while you're admitted. Drinks gallons of water of juice to flush it out, and have showers and wash your hair. I had a shower on the Monday night, then 2 on Tuesday, then again on Wednesday before I had my final scan which dictates how long you need to stay away from people.
You feel no different after you've taken the iodine (and you don't glow in the dark haha!). Some people can get a bit nauseous, but you can get anti emetics if you want. It can cause your salivary glands to swell. This happened to me and it was uncomfortable, but nothing that paracetamol wouldn't shift. The nurses can give you medication for it.
My first surgery was August, my second October and I had the radioactive iodine in November. I returned to work in January after being off since my first surgery. Physically I could have gone back to work sooner probably, but my GP was keen I take some extra time towards the end to make sure I was emotionally ready to go back.
This has ended up huge, but I hope it's helped to explain the process a little and to reassure you. Honestly, it is a strange process, but the outcome is generally great and you don't have to worry about chemotherapy or anything. You will have a small scar on your neck but over time they fade to nothing. My scar is about 3 or 4 inches long and sits at the base of my neck just above my collar bone. It is quite noticeable at the moment because it's so fresh, but a family friend had his thyroid removed a few months ago and you cannot see his scar at all. So try not to worry about that either!! All in all, it's a relatively smooth process, so try not to worry too much :)