New Diagnosis of Metastatic Papillary Thyroid Carcinoma

Hi Gav

I’m 26 and had surgery in December and RAI 3 weeks ago. Like you I had a clean health history before this. 

It’s incredibly scary to get used to suddenly being involved in the healthcare system, but do take it as a reassurance that thyroid cancer is relatively treatable compared to some of the other forms of the disease.

The word “metastatic” is incredibly scary when it comes to cancer but it’s worth noting that lymph node mets are both far more common and easier to treat than distant spread outside of the neck. 

Surgery tips:

- I will caveat that I did NOT had a neck dissection as my cancer wasn’t believed to be in my lymph nodes (they later found during the surgery that it HAD spread to lymph nodes, but only “level 6” nodes closer to the thyroid and not to others in different areas of my neck). I’ve been told that the neck dissection is a slightly more complex surgery than a bog standard thyroidectomy and you may need a slightly longer recovery period than the routine 2-3 weeks.

- You’ll be asked to report to hospital early in the morning of the surgery and not to eat or drink anything after 4am. Take a book or something with you, because once they check your height, weight, bloods etc and admit you, it may be several hours before the surgeons are ready for you

- Once they’re ready, you can walk into the anaesthetic room and lie on the bed. You’ll be given surgical socks to help prevent deep vein thrombosis. Then they’ll give you something called a naseendoscopy, this is when they’ll give you a local anaesthetic and put a camera down your throat through your nose. This can help the surgeons understand the structures in your neck and reduce the risk of voice box complications.

- After this you’ll get the general anaesthetic injected into the back of your hand. Next thing you know is you waking up in the recovery room 2-3 hours later.

- You’ll wake up sitting up, propped up by multiple pillows to support your neck. If your experience is anything like mine then expect mild-to-moderate neck pain, nothing excruciating, and a sore throat from the breathing tube.

- Once you’ve come round, you’ll go back to the ward, but they need to keep an eye on your calcium as there is a relatively common risk of the surgeons accidentally damaging the tiny glands next to your thyroid that regulate your calcium levels. If this does happen it is almost always temporary and you’ll be discharged with a couple of different medications to help regulate your calcium. It’s important that you tell someone straight away if you feel a tingling sensation in your fingers and toes as this is a symptom of low calcium. Expect to stay in hospital at least one night for calcium monitoring. 

- You’ll be sent home with levothyroxine which you must take every morning, an hour before eating or drinking. Personally I find it helpful to keep them right by my bed and take them as soon as I wake up to reduce the amount of time I need to wait to have breakfast. You’ll also be given basic painkillers.

- Whilst you relax at home after surgery, the thyroid and nodes that were removed will be sent to a pathology lab and looked at under a microscope. This will give them more information about the features of your cancer and inform the follow up. It will determine whether you need RAI (in your case as there are nodes, RAI will definitely be the case) and what dosage they’ll give you.

RAI

- Follow a low iodine diet for 2 weeks before hand. Lidlifecommunity is a great website for showing which foods to avoid

- You’ll most likely be given injections on the two days before the RAI. This means you won’t need to stop taking levothyroxine which I’m told is a particularly nasty period. I had Thyrogen injections which I believe is the done thing.

- The RAI itself is a breeze. Literally take a pill and then chill out for a day or two. I had the 3.7 GBQ dose which is considered medium and I was in and out in 24 hours thanks to drinking a lot of water.

- After RAI you’ll go for a scan which will inform them of any further cancer spread. If they do find anything unexpected, they’ll probably repeat the treatment in 6-12 months. RAI is very useful as it not only kills cancer cells, but also kills healthy leftover thyroid tissue which could potentially become cancerous, so it can reduce the chance of a recurrence.

- After RAI you’ll be in a regular follow up with blood tests and scans but hopefully no more treatment. 

I hope I’ve given you some useful info there. I’ve gone through it all in the last 4 months and it’s incredibly traumatic, but please be reassured that thyroid cancer is one of the cancers that they know how to treat and have a good record in doing so. Not only is the cure rate very high, but the cancer also generally doesn’t cause hugely debilitating symptoms so you can live a relatively normal life while going through the treatment. I always tell people that I had a preconceived notion in my head that cancer patients were incredibly unwell all the time, in and out of hospital etc, so I was very surprised that I was a fairly normal functioning human being throughout the entire process.

Contrary to that, the mental struggle is absolutely real. I’m planning to ask for therapy in the very near future to help me deal with the anxiety, and would absolutely suggest anyone do this is they think they need it. 

Wow, I couldn't of asked for a better run down. Thank you so much for taking the time to write back, it's really appreciated. That was some really useful information and from what I've been told, I need to buy a nice V shape pillow for sleeping upright, some bio oil for the scaring and a good book for the boredom. 

I'm sorry that you are dealing with your mental health now. I might be going you with that one. I also suffer a little with depression and anxiety, but I've always managed to keep it under control myself. So far, I've dealt with the cancer really well and I feel disconnected from it. I'm sure all that will change as I'm walking up to the hospital doors on the day of surgery. Good luck with you're recovery and therapy and please keep in touch. 

Hi Gav, 

I was going to try give a run down but DM has done that amazingly well! I was diagnosed aged 25 and now I am 28 and basically given the all clear. I had a pretty smooth run with my surgery and RAI but being thyroid free is something I will always have to consider. I still live my life 100% as I barely feel any different to before I had treatment. My scar is also barely noticeable and I had to have lymph nodes removed. I do suffer with anxiety but I have found a lot of reassurance in this group to be honest! Just so you know there is light at the end of the tunnel!

let us know how you get on.

Lydia x

Hi Lydia, thank you very much for reassurance. Both messages from you and DM are of great help and much appreciated. What do you think triggered your anxiety if you don't mind me asking? Is it something you can get treatment for? My wife has always said I suffer from a bit of depression and anxiety and I was told the chemical balance from the thyroid may contribute. 

I've got my surgery in 4 days now, so I'm trying to tick everything off the list for info that I may need. I was told to ask for a pre-med to calm my nerves on arrival. Also to wear comfy clothes with zip-up or button up tops. These are great tips that I wouldn't have thought of. 

What kind of foods do you eat after surgery? Are you able to swallow and is it just a liquid diet? I was thinking about bringing in some slim fast shakes or custard pots if I'm allowed them. 

I ate a full Christmas dinner 48 hours after my surgery (albeit aided by plenty of paracetamol and ibuprofen) so as long as you have basic OTC painkillers, you should be able to eat pretty normally 

Hi Gav,

Some fantastic info given there by DM.

I had too had metastatic Papillary thyroid cancer. I had my surgery in August 2017 at the age of 34. I had a complete thyroidectomy and left neck dissection. I had 56 lymphnodes removed from my collarbone up to behind my ear. 19 of those had papillary thyroid carcinomas. My surgery took about 8 hours. I had fasted from night before and wasn't back on ward until 9.30pm on day of surgery so, I was starving and. I hqd brought some tubs of Custard and creamed rice with me because they don't need refrigerated so was able to manage to eat those. But I forgot a spoon, that would've been handy. Was able to eat normally from the next morning.  I'd also suggest very loose fitting tshirt or button up pjs as I was a bit stiff after and the drains got in the way.

After the surgery I wasnt really in much pain because the neck dissection caused significant numbness. I'm still quite numb on my left shoulder, feels like your arm after you've knocked your funny bone. I had 2 large bottle drains and had to stay in hospital for about  5 days until I had 1 removed and the other had a a small bag attached so I could go home. I also had a small amount of chyle leak, it was like a milky liquid that came out into the drain. I think it is fairly rare and because mine was a left side dissection.  

I bought a V pillow but it was a memory foam one and quite firm so couldn't stick it. I ended up sending my boyfriend to the nearest bedding shop to bring a selection of pillows to choose from. I could only stick a super soft one to begin with. 

It's important to get moving so you don't get neck stiffness so physio after is a must. I've got near 100% movement back.  I took 6 months off work. I had RAI in December 2017 and am back working as a service engineer. 

Hope your surgery and recovery all goes smoothly.

Good luck

Ciara

Edit, I forgot to add that I had an endoscopy to photograph my vocal chords before my surgery. In case there's any damage they can refer back to the before pics. I was a bit hoarse for a few days but voice went back to normal. 

As DM said watch out for the tingling, a sign of calcium deficiency due to the parathyroid glands getting bruised or damaged. They normally put you on calcium tablets for a few months after surgery. 

Hi Gavin, So I had anxiety before the whole thyroid thing but it was general anxiety and after cancer it has become more health anxiety. Like thinking every tiny ailment is going to kill me. I’ve been on anxiety meds for a few years too. Also I have a really good private councillor I speak to sometimes and she’s amazing to unload to without any judgement. I ate just normal hospital food straight after surgery I just ate slower! I lost a lot of feeling in the skin around the scar which may have been the reason I had almost no pain just like stiffness really. I was actually pretty chilled about the surgery, I don’t mind aesthetic at all, it’s just like a really deep sleep. Then I hung out in pjs/leggings for a few days recovering X 

Oh yeh forgot about the bloody drain! I ended up tying it to my hospital gown at first so I didn’t yank it out when I went to the loo. Also found it hilarious to offer it as a ‘beverage’ to any visitors I had, sick I know but I had to find some humour in the situation

Remind me never to ask you for a beverage

I wore my dressing gown like a cape and had a bottle in each pocket

Awful isn’t it! Haha amazing how we find ways around situations like drains hanging out of your neck! X