Hurthle cell cancer: thoughts running away with me

Heya LittleGibbon, 

It's not unusual for your thoughts to run away with you from time to time after a cancer diagnosis. I'm pretty sure almost everyone will have had a moment or two when all the 'what ifs' decide to pile up and overwhelm them.

One of the best things you can do is stop Googling. Google is excellent if you need to know who the leader of Mexico was in 1697, but it is the worst thing ever if you've symptoms or a diagnosis of something. 

Your parathyroids are 4 small glands that are located on the back of your thyroid, to put it simply. When you have your thyroid removed, they do their best to avoid your parathyroids, or if they accidentally remove them then they stick them back in again. They deal with your calcium and vitamin D levels, and help to regulate those. You can ask your doctor to check both of those, as well as the parathyroid hormones, to make sure they're working OK. However chances are if they weren't, you'd know about it as calcium deficiency has some very obvious symptoms that you're not showing.

Insomnia is easily connected to cancer because your mind is whirring away and stressing out. You've got too many worries to be able to sleep properly. Lethargy is connected to that, because if you don't sleep then you're obviously going to be tired and on a bit of a go slow. Since your hemi, have you had a thyroid function test done? Depending on when in Jan you had it removed, I'd guess we're at least 6 weeks after it now? If so, ask your doctor for a TFT to check both your T4 and TSH. It could be that the remaining half of your thyroid isn't picking up the slack and you're slipping into hypothyroid range. This would be MUCH more likely than parathyroid cancer, which you almost definitely haven't got.

The thyroid is part of the endocrine system, and when some or all of it is removed it can set off or worsen menopausal symptoms. So it's quite possible that you've got this side effect too. But you can ask the doctor to test and see which stage of the menopause you're in. Now in general, GPs will give you the blood forms or put a note on the system of all of the tests needed, and you'll then need to make an appointment with the nurse to actually have the bloods taken.

The CT scan is because the results came back as minimally invasive. This, I believe, means that there was some attempt made at invasion, but it was a small and pathetic one. So they just want to make sure that nothing did escape and that the other half of your thyroid looks healthy with no lumps or bumps in it. So it's just standard routine to dot the i's and cross the t's. Nothing to be overly worried or stressed out over.

Good luck with the GP, and shout up anytime! 

Lass

Xx

Thanks so much Lass,. As always, your information and advice and general support has really helped. I feel calmer now. I am getting way ahead of myself I know!

Saw GP this morning and she was very helpful. Blood tests tomorrow just to check everything. That will be reassuring I think. She will calcium along with everything else, so that should put my mind at rest re parathyroid cancer, which it's highly unlikely I have, as you say.

And, yes, of course a CT scan would be routine in a case like mine.

How are things with you?

LG

Heya Gibbon,

Very glad that the GP, and my post, helped you out and made you feel a bit calmer about everything! It's very easy for our minds to take a wee walk off into 'what ifs', so it's good to have a place like this to double check where you're at and what's going on.

As for me, just pottering along. On a recovery day, or three, after 2 days of baking for a wedding cake tasting so suffering a bit at the minute. But I have cake, and maybe a gin later, so who can really complain too much? lol. Though speaking of complaining, I've just escalated my complaint with Transpennine up to the Rail Ombudsman. It's been 52 working days since I complained and all they've done is ask for proof of my tickets, twice, and ask for my passenger assistance booking reference. So, time to escalate! See what happens!

Good luck with the bloods, though you won't need it. Hopefully they'll use the butterfly on you. I like that one more than.... whatever the other thing is called. Less bruising. lol

Lass

xx

Are you a baker by profession Lass?!

I have no profession at the moment, but as I was going through treatment, I took myself back to college and retrained as a baker/patissier/chocolatier. I had thought things were improving and I might get back to work, so I wanted to go into a profession where I had some passion. Unfortunately, health took a turn for the worse so I never did get to get a job - except for 3 weeks work experience in France and 3 weeks work experience in Iceland. So I just bake when I have someone to feed now! lol.

I need more people to feed!

Lass

xx

Sorry that your health has got in the way of doing your dream job, but what a fantastic skill - and gift, as it really IS a gift - to have. Baked goods make people SO happy!

I used to enjoy baking, partly I think because - in common with many others - I was taught the basics by my mum, and have such happy memories of time spent in the kitchen with her. Lost enthusiasm in recent years but am vegan now and cakes, scones etc aren't always that readily available in the shops, and many vegans become good bakers as a consequence. So I really should try to brush up on my skills again.

Hi ya. It’s amazing how your head decides to intervene in all logical thoughts before we all get the facts. I had my left side removed three weeks ago with tumour. Felt great and nearly all symptoms you describe have gone. Still tired sometimes. Test results back last Thursday and it’s not what I wanted so it’s malignant Thyroid follicular cancer. However I think the words in your text which are really important are minimally invasive. That normally means it’s non agressive as I have been advised too. MDT meet today and I go back Thursday to find out next steps. Try not to fret. One thing I do before each meeting is write down what I want to ask them . All too easy to forget if they take charge of the meeting. You’ll be fine I am sure. Most Thyroid cancers are in the main very very treatable. Hold on to that for the moment. 
hope this helps

Sorry for taking so long to respond to your helpful and encouraging reply Daddavis. With all that's going on in the world at the moment, I was finding it difficult to order my thoughts, and lots of things have lapsed.

The good news is that, despite all my fears, there is no spread, which is a huge relief. With the way my luck has gone - I've been told all along that I would be very unlucky if this and that, and I always WAS unlucky! - I became convinced that it would be the very worst news, but it turned out to be just the tricks our minds play on us.

I will have to have the other side of my thyroid removed later in the year (who knows when - I guess it will be a lower priority than many things, and that's fine and only right). This is just a precaution though and the surgeon is speaking quite positively about the outlook.

In a strange way, all the sadness and worry over the virus has taken my mind off my cancer diagnosis. Before lockdown etc, I was thinking day and night about having cancer, and what the future might hold, and googling stuff ALL the time. Now the day to day stuff seems much more important.

And the insomnia has finally lifted. This was the very worst thing of all. I still can't say 100% that it was linked to the cancer but I feel it must have been as it was completely different to any sleeping problems I might have had in the past. It was as if something in my body was stopping me sleeping, including napping during the day which I usually do quite a lot of! Constipation which had troubled me for months has also improved a lot. I was eating 12 to 15 portions of fruit and veg a day, plus seeds, nuts, oats, wholegrain everything, and still only managing a poo every 3 to 4 days. I am linking this too to the cancer. Now that the tumour has been removed, it does seem as though my body is behaving more normally in really key ways.

I'm very sorry to hear about YOUR diagnosis. It's such a shock, isn't it? We know the stats on cancer but somehow never think it will be us who are affected. How has everything been since the MDT meeting (perhaps you have posted in a different thread - I will check)?

Hi Littlegibbon.  After the MDT I was scheduled to have the second op.Just had the other half removed and feel great. No issues with my voice and healing well. No results back but expect RAI to be the next and final step. Got terrible Tinnitus though which I am advised is unrelated so will get that looked at. Started Thyroxine medication last week and am feeling ok if not a wee but tired. But for all that I am positive and hope you are doing well.

John

Yes, doing generally well. Had completion surgery in May and as before recovery was quick and straightforward. And no further cancer was found in the tissue they removed so I don't have to have any more treatment, just regular checks. Not sure if my body has adjusted yet to not having a thyroid and taking thyroxine as I feel very lethargic (but it's not unusual for me to feel tired and unmotivated, just not all the time as I do at the moment). Early days though. 

Hope your tinnitus has eased. I've never had it but it sounds like a really miserable condition. 

Have you had your RAI yet?