Newly diagnosed!

Hi . I am not a member of this group, but noticed your post has gone unanswered so giving it a bump for you in case it has been missed. Can't give you any specifics on your particular cancer, but some general things. A pre op, if you have not had one before is just to check your general health to see if you are ok for an op. Just general checks and lots of health questions. Usually during the op, they take biopsies which take about 10 days to process. Then a wait for a follow up appointment for results. The results usually determine any further treatment. In most cases of cancer, people usually have a general CT scan, just as a precaution to check there is nothing else going on. Hopefully, someone with more specific answers will be along to help. I hope all goes well. Best wishes.

Hi Rily

Really no need to go bumping - this isn't a busy group where messages will get lost in a few hours if they aren't answered.

Hi Dobemum

Firstly, please put thoughts of breast cancer out of your mind. Thyroid cancers are very different from breast cancers in treatment, prognosis, pretty much everything. Mostly, they're quite different from most other cancers too. But not in a bad way.

If the docs know for sure that it's cancer, most likely it's a papillary thyroid cancer - the most highly treatable version with the best prognosis. Other types are more difficult to diagnose with needle biopsies.

Are you in the UK, please? I ask because a full thyroidectomy is usually a 2 night stay so they can monitor your calcium and only put you on the tablets if the blood tests show you are deficient. This is because a thyroidectomy comes with a small risk of damaging your parathyroids - little rice grain sized doodads that live near the thyroid and control the uptake of calcium. Most of us lose a few during surgery - I think I have only one left but it works very hard.  Protocols may well differ in other countries, or I guess it's possible that shorter stays might be a Covid precaution.

Pre-op is a health check plus swabs to make sure you don't have MRSA. Generally they're no less than a week before surgery but once done, they can be valid for a few months (just in case surgery gets delayed). These days, I'd expect them to Covid test you as well and I believe many hospitals are telling people to self isolate for a week (maybe more) before surgery to avoid bringing the disease into the operating theatre or the wards. 

You would normally get the pathology results on the lump around 2-3 weeks after surgery but it's not unusual for it to take a lot longer with the current crisis not helping on things like that.  You may well not get formally 'staged' (1-4) because it's really not very relevant to thyroid cancers as the treatment is pretty much the same regardless of the stage. Most UK doctors use a TNM staging (there's info on the Mac site if you hunt around) but please don't get hung up on the numbers.

You may get other scans post surgery. You might get an MRI pre-surgery. It depends on the hospital, the surgeon and the country. If you need radioactive iodine treatment after surgery, that will act as a really good indication of any spread.

Dizziness? I don't think that's a typical symptom of thyroid cancer but may well be a side-effect of a feeling of panic. 

Any more questions?

Thank you for your reply :)

Hi Barbara,

Thank you so much for your reply.  I am in the UK (Oxford) so went to the Head and Neck Cancer specialist unit in the Churchill.  The consultant said I would be on calcium for two weeks and that it would only be one night stay but like you say I suspect that might be due to Covid.

The dizziness has been ongoing for around 2 weeks now so not anxiety related and I have numbness in parts of my mouth which has been like that for over a month. I am hoping that I'll get answers to all these weird things as I progress along the path.

I guess the main thing is waiting and seeing what my consultant decides to do as it seems they all do things quite differently.  He seems nice which is great.

Thank you so much for taking the time to reply

Sarah

Hello again

This site is driving me crazy. I have to write my responses in Word and then copy them across as the ‘system’ only puts a single letter on each line. I would have hoped it would have been fixed by now.

Anyway, back to your questions.

The normal reason for people staying in for 2 nights is to do the calcium blood tests. Some people stay longer – especially if they have lymph nodes removed. It doesn’t sound like that’s planned so I guess that if the first blood test is OK, they’ll load you up with tablets and send you home. They also won’t send you home until they’ve got the drain out. Many people will tell you that’s the yukkiest bit but mostly it’s just an odd feeling of the tiny tube being pulled out.

Once you get home, don’t bank on running around too much. If you have small kids, picking them up will strain your stitches, and it’s the perfect time to ask other people to do all the literal and metaphoric ‘heavy lifting’. That said, in my case, I had my mum come to stay and I didn’t really need her help (though it was nice to have her there though I had to guilt trip her into coming after a friend offered to stay). I always recommend getting lots of pillows – V-shaped one is a good idea – so you can be propped up in a semi-sitting position for the first few days. Lying flat can pull on your stitches and – unless you’ve got abs of steel – sitting up from a fully flat position can be a bit of a palaver.

Numbness after surgery could be explained. Numbness before is probably unrelated. As you’re seeing docs at a H&N specialist department, you may well be in a good place to get that fixed. The dizziness could be something like Labarynth syndrome (do you feel a bit sick as well?) or some kind of inner ear infection (but I’m not a doctor so that’s pure guesswork). It’s easy to think everything is related to your cancer at a time like this. I tell people that thyroid cancer cured my verruca (actually, being worried about TC distracted me from poking at the verruca and it cleared up on its own).

Consultants might seem to be doing things their own way, but no decision on what they do with you will be taken by the surgeon or oncologist alone. There will be a multi disciplinary team (MDT) monitoring your case and decisions will be team ones. So that rogue surgeon fear is not justified these days as too many others are keeping an eye on him or her.

Hi Sarah

Welcome to the group but sorry to hear of your diagnosis. I had a total thyroidectomy and central neck dissection in March this year just before lockdown. I was in at 7am, first on the list and I went home the following day after having a few checks and my drain removed. I felt quite tired the first couple of weeks, slept propped up on pillows, your throat feels quite tight but does improve as the days go on. My voice was a bit raspy as well. I had staples in my neck and they were removed at the hospital on day 10. Some hospitals use different methods . I used bio oil on the scar and that works really well.

My brother had his thyroid removed at The Churchill over 30 years ago, Oxford hospitals are really good, all my children were born in the JR!

Good luck with your operation, I hope you get a date soon

Hi welcome to the group.  I am sorry you find yourself here but now your part of our thyroid family.  I had a total thyroidectomy in January and also had quite a few lymph nodes removed.  As you have been given lots of info regarding surgery I'm going to focus on some suggestions on how you can look after yourself and prepare for hosp and after.  Buy nice pj's, some nice moisturiser for body and face.  You can't get your neck wet after surgery so washing your hair is difficult I bought nice hair clips and put my hair in plaits.  Buy a v shaped pillow for sleeping as I had to sleep upright for quite some time.  Use a straw to drink as this helps with your swallow.  Please make sure you get physio exercises for you neck and shoulders. Really important.  I still do mine  everyday.  You have a lot to cope with after surgery as having no  thyroid will bring changes. Try to be kind to yourself.  Good luck.  I will be thinking about you so when you feel up to it let us all know how you are.

PF

How are things now Dobemum? It's such a shock when you get the diagnosis. Have you had your surgery yet?

You should get a clearer idea of what's happening once the lump has been removed, although you can wait 2 or 3 weeks for lab results.

You will then probably have an ultrasound to check if the cancer is occurring anywhere else. (I was so scared about this, but none was found.)

I haven't heard of dizziness being a symptom of thyroid cancer. I think once we are diagnosed we tend to worry that every "small" symptom we have is related to the cancer, but the chances are it isn't. Could be something completely unrelated, or perhaps to do with the anxiety around your new diagnosis? Chat to your GP if concerned?

Do let us know how you are.