Having to have other side of thyroid out

Hi Jo

Well you're an old hand at it this time round so I hope there will be some sense of familiarity and perhaps less fear than the first time. If it was follicular, I'd guess you didn't know whether it was cancer or not when you had your first half removed - this time round not so much uncertainty perhaps.

The main difference you should expect is that you may well be in for 2 nights rather than the usual 1 as the docs like to take your calcium blood tests over a couple of days to make sure they've not cut out or damaged all of your parathyroid glands. 

Are you already on thyroxine or have you been getting by on your half remaining thyroid?

Hi barbaral,

thank you for your reply. Yes very nervous this time around as I know what’s coming.  No I only found out it was cancer on my 6 week check up with consultant and that came as such a bolt out of the blue! 

Not on any levothyroxine as the half was making enough, so anxious about getting use to that too. He did say when I saw my consultant last that I would probably have to have calcium supplements. 

Work haven’t been the most understanding either .. they keep asking how long I will be off for & I even had to take a days annual leave to attend my pre op appointment last Friday . Just all stressing me out! 

Thank you again. & take care

jo x

Hey Joey,

Call the Macmillan helpline tomorrow and ask to speak to the people who deal with workers rights. As you have a cancer diagnosis, you now fall into the protected category. So I don't believe they are allowed to make you take a holiday day to attend an apointment.

However if you call and speak to them tomorrow, they'll be able to tell you for sure what your work can and can't do, and how they have to treat you. It'll give you a boost and a bit more confidence when dealing with them.

Lass

XX

Lass is absolutely right, Your employers have to make allowances for you having cancer.

Like many of us you may well be trying to play down the seriousness of the treatment but once in a while, a swift but firm "Hey, ease off on the hassle will you? This IS cancer, you know" might help.

You are going to be fine but work need to understand that it doesn't fix itself overnight.

Hi Barbara, thank you soo very much for your reply. Yeah everyday seems to be a struggle lately, but work don’t realise how much it takes out of you! 

You are all so very kind and it’s lovely to know that you’re out there! 

Take care all

thanks again for your suggestions.

jo 

Do you have an Occupational Health department (or person) at your work? Mine tried to stop me coming back so soon and she does a great job on phased return for people who need it. It's not unusual in large companies but smaller ones often don't have anybody. Your HR people should be able to tell you if they have anybody and if they don't, try to find out who on the HR team handles illness.

People having cancer treatment have similar rights to those with disabilities. Most of us choose not to exercise those 'rights' as we either get well pretty soon and don't need them or we don't want to self-identify as disabled but if work are giving you aggro, then it's well worth making sure you know your legal position. 

It's a hard set of circumstances to handle but perhaps you could ask for some special treatment - e.g. work 4 days a week or have shorter working days - just until you get back to your new normal. The very act of asking might help you to get your cancer treatment taken more seriously by your company. 

Hi all, just had my appointment for my operation!!! They are having to redo my pre op as it was done back the beginning of April!! So that’s being done on 23rd July and my ops booked for 6th August! So finally being sorted. But it’s taken a stern letter from my fantastic gp to get this appointment!! As I was getting so down about it and feeling my throat was not right!! 

Take care everyone 

joey

Hi Joey, I had half my thyoid removed in December and the other half removed in March. You will be fine but like you I was nervous because I'd already had one operation and knew what to expect and sometimes that's not a good thing but I was only in 2 nights and there were no complications. 

Before my cancer diagnosis I had felt unwell for at least 2 years. My biggest symptom to begin with was weight gain and I couldnt shift it despite joining slimming world, I had extreme fatigue and dry skin, hair and eyes, sore achy muscles and bones, loss of libido and just a general feeling of malaise. My gp was very unsupportive and insisted my only problem was my weight as my thyroid levels were normal. As you can imagine this didn't have a great effect on my mental health and became very down.  Anyway a strange swelling on my neck got me referred to  ENT and the scan revealed a nodule on my thyroid.  Fast forward a couple of weeks and I  was diagnosed with Hashimoto's disease and papillary thyroid cancer. The Hashimoto's is responsible for all my symptoms but the cancer diagnosis was devastating. 

So sorry for the long post, I was trying to reassure you that you will be fine with the surgery. My biggest problem now is trying to get information about my condition i.e. having no thyroid and trying to get used to levothyroxine. I'm not convinced I'm on the right dose as I still have all the symptoms and shockingly I had been given an appointment with my endocrinologist for October a full year after my first appointment! So I expressed my concern and worry about this and I have been given an appointment for the thyroid clinic tomorrow.  I didn't even know there was a thyroid clinic!  

One of the first question I will be asking is concerning the fact that if you don't get the thyroxine levels right the cancer can come back, no one has mentioned this to me. I only found this out through macmillan's booklet on thyroid cancer.  So many questions to be asked.

I wish you all the best for your operation, I am sending you positive thoughts. 

Sharon x

Heya Sharon, 

How did it go at the thyroid clinic? Did you get the answers you needed? Did they explain everything you needed to you? 

If you've any questions left, feel free to shout and we'll do our best to help where we can. 

Lass

Xx

Hi Lass

It was ok. Got a lot of my questions answered but the scariest revelation was that if my thyroxine is not kept at a high enough level the cancer can return so this was a bit of a shock. I also explained that I was still having symptoms of the Hashimoto's disease (this had also been diagnosed at the same time as the cancer) but the professor said this must be caused by something else which I refuted immediately. I've put up with professionals telling me for the last 3 years that it's something else nainly weight related . The symptoms are exactly the same, he did suggest however, that as I had only been on the thyroxine about 12 weeks perhaps patience was required as it is a very slow acting hormone and takes a long time to get into your system.  As it turns out this may be the case as I have seen a change to my skin and hair i.e. much less dry so I'm hopeful the rest will follow like being able to lose all the weight gain the Hashimoto's caused. The tiredness has decreased too and to be honest I'm finding it hard to sleep.  Not sure if that's because I'm on such a high dose of thyroxine.  I was reassured to be advised that I will now be under their wing i.e. thyroid cancer clinic and will be monitored every 3 months and this is the first time I have felt anyone will be looking after me, so pleased with that. So all in all it was a worthwhile visit just a pity I had to go to such lengths to get seen.