Papillary Thyroid Cancer - Possible lymph node involvement.

Hi

I had a TT and 31 lymph nodes removed in April and didn’t find it too bad. I had a 2 night stay in hospital, but could have gone home after 1 night. I took the pain relief which was recommended so wasn’t in pain. After I got home I was tired and slept every afternoon for a week. I did go out for walking as soon as I got home. 

I ate a lot of soup the first week, partly because I wasn’t that hungry and also wanted “easy” food. I was careful about lifting heavy things and got my grocery shopping delivered 4 weeks.  I had a very stiff neck I couldn’t drive for 10 days. 

Good Luck

Thank you for your response!!  

I am having 'at least' a TT and possibly a lateral neck dissection (if the lymph node that showed no cancer actually comes back positive during the surgery) ... 

How was the Anesthesia for you??   That scares me at least as much as what I have in my neck (no matter how silly that is).  Did you do well going to sleep and waking back up?   I will be getting Propofol and Ketamine.   

11 days may as well be 11 years.     Thanks for letting me ramble :) 

The anaesthetic was fine, I remember chatting to the nurse and anaesthist about  marathon running and the next thing I knew I was in the recovery room. I was monitored closely until I was taken to the ward.

I had 31 lymph nodes removed from my neck, but not sure of the medical term to describe the procedure. 

Dont worry, my philosophy is there is nothing I can do to change the suitation so there is no point worrying about it.

Good Luck.

Hey Greg, 

Glad to have you on the forum, and yes, get off Google!! Lol

So, anaesthetic. We aren't usually told what drugs they use to knock us out here in the UK, so I'm afraid I doubt that anyone will be able to give you specifics on those ones. I've been knocked out a few times, and only once have I had a side effect which was I just couldn't stop shivering for about an hour. I wasn't cold, I was just shivering. You'll find that for about a week after the op you're extra sleepy, then again a month or two later you'll feel sleepy again. The first is just the remnants of the anaesthetic leaving your body, the second is your fat cells that absorbed some of the anaesthetic being broken down and releasing the drugs. Neither are anything to worry about. 

Pointers for after the TT... 

You don't mention your living arrangements, but there are a few things you can do to make life easier.

First, you're not going to be comfortable lying in bed with your normal pillows. Best thing to do is to find some spare pillows, towels, duvets, etc and build a bit of a slope for you to recline against. Then, as your neck heals then you can gradually lower your slope until you're back to lying flat again.

Second, your neck is going to get tired really easily. So make sure that when you sit down, you're resting your head against something so that your neck isn't constantly supporting your head while you're awake. The more you can rest and relax in the first week, the better. 

Third, if you're the main cook in your house, cook extra now and freeze it. Standing and cooking is going to knacker you, so if you can meal prep now so all you need to do is defrost and reheat after the op, you'll thank yourself for it later. 

Fourth, if you're the primary care giver to any vulnerable adults or kids, you're going to need help for at least a week. You're not going to be able to drive or lift things that are too heavy, so if that's key to anything you do then try and think of help you can get in. 

Pain level - everyone is different and everyone copes with it differently. I was on paracetemol and Ibuprofen for a few days then nothing. Others have said they needed morphine. So it all depends on what your pain tolerance is like. But as I say, for me, it was nothing. The worst bit was that it felt a bit tight and inflexible because of the internal stitches and external glue.

The other thing to mention, especially with you being a Floridian, you need to keep your scar out of the sun for about a year. It's new, delicate skin growing there, as well as old damaged stuff, so you need to take care of it. So neckerchiefs, factor 50 constantly applied, polonecks, whatever you feel like putting over it. Just keep it out of the sun. 

Hope that helps! 

Lass

Xx

Hi Greg,

I hope you're recovering well, both physically and mentally. I went down a very similar road just over two years ago and am quite alright now.

My story:

My other half told me to have a big lump in my neck checked out so I went to the GP who referred me to the hospital. There was a three month wait and I'd moved house in that time and forgot all about the appointment and missed the letter.

The X Ray department rang and said I'd missed my appointment and did I want to book another one, and on the flip of a coin, I said yes. So I went about two weeks later and the ultrasound operator took a lot of pictures and mentioned calcium deposits. I didn't know what that meant but was pretty certain it was bad.

I went home and asked my partner what it meant, and she said it likely meant I had cancer, which she knew because her husband had died from an ENT cancer two years beforehand, which freaked her out.

I googled too, but my search led me to the Macmillan website and I got an idea of what the problem was from their cancer types section. I had lots of people around me but I felt pretty blooming alone. I stopped looking after I realised how likely it was that I had cancer. It was a bit like the bit in Poltergeist where the mum creeps up and opens the door to her daughter's room and shuts it immediately when it screams at her and she's left sobbing on her own in the hallway. That's pretty much how I felt.

I had an appointment or a test every week for four weeks. The FNA test was definitely not something I would want to repeat! It came back benign but the ENT surgeon said he didn't trust it.

On the fourth week I went in for surgery and they removed a stage 3 cancer that had migrated down my lymphs into my chest and was the size of a couple of tennis balls. They did a biopsy on it and it was two types of cancer, both of which could be dealt with with radioactive iodine.

I've got no lypmphs on the rhs, no parathyroids and no thyroid and had a vocal palsy which thankfully cleared up. After that it was thyrogen injections and radioactive iodine to mop up about two months later. I don't know what it was about the RAI but I slept better than I had for months, maybe it was because I knew I was at the end of the road regarding treatment.

I remember there was a tall billowing chimney outside my radioactive room and thinking, "that'll be you if this doesn't work", which seemed a little unfair as we'd just bought a house and were expecting our first child.

Levothyroxine: I'm on a high suppression dose which makes my guts run fast, which initially created some actually quite comical moments but it got old quite quickly. But it's not all the time and I've altered my diet which slows it down a little and the whole things calmed down now.

The biggest hurdle for me was getting the levels of calcium and alphacalcidol right because I'd lost my parathyroids. I was up and down like a yoyo for about a year. I'd suddenly start tingling around my mouth and then I'd be unable to talk and my hands assumed the position of a shadow play bird. It was awful. I was so tired, I could just about get through work. Low calcium also made me hallucinate - things, people out of the corner of my eye, ants everywhere, beetles, that sort of thing. I thought I'd lost it until the levels were sorted.

It's all sorted now, endocrinology were brilliant, they realised the doses were back to front - I was on four Sandocal a day and 1mg of alphacalcidol. They dropped the former, increased the latter and I went off like a greyhound out of its trap. I was back, I had my old energy back and wasn't seeing ants everywhere.

I've heard of people feeling tired because of levothyroxine but I've personally not noticed it. Probably because we now have two boys so we're both worn out all the time!

I get frustrated being dependant on medication to continue existing, but frankly it's better than the alternative.

Do you get colds and flu in Florida? I'm finding that without the lymphs I am captain of the flu team and general keeper of colds. I get wiped out about every 3 to 4 months by probably not very complex viruses.

Mentally it took me longer to get over it in my head than my body, I was back to work after three weeks but I didn't get my head around what had happened for about a year. I found myself sporadically bursting into tears at work and having to make safe, drop tools and pull myself together in the toilets.

How are you holding up? Are you recovering alright?

It must be nice in the Sunshine State!

I hope you are well.

Nick

Hey Nick, 

Thanks for sharing your story, sounds like you've had a bit of a time of it. However it seems like things are back on track now though. 

Just one thing, could I ask how old you were at diagnosis please? 

Ta

Lass

Xx

Hi Lass,

I was 35.

Have I broken a forum rule?

All the best,

Nick 

Hey Nick, 

Nooooooooooo not at all! Lol

There was just something that didn't quite sit right with what you were saying is all, so I played a hunch - and I think I was right.

Thyroid cancer is a bloomin weird one in how it is staged. It actually varies depending on age at diagnosis. You say you had two types that are both treated with RAI, so I'm assuming papillary and follicular? If so, then your cancer wasn't stage 3 because you weren't over the age of 55 at diagnosis. It can only be a max of stage 2.

So mine had spread to a lot of my bones when I was diagnosed at 31, but I'm still classed as stage 2. If I were over 55, I'd be stage 4. As I say, bloomin weird! Lol

Lass

Xx

I just went with what the specialists told me.

Either way, I hope my first post was of use to the chap from Florida.

All the best,

Nick

Yeh, the ENT consultant told me I was stage 4. It was my thyroid oncologist who corrected me when I first saw her and we were going through everything to make sure I understood what was happening. 

But I'm sure that some, if not all, of what you said will reassure and help him!

Lass

Xx