9cm tumour in left lobe - advice please

Hi Anne

Welcome to the group. I had a similar experience, I was told repeatedly that all was fine and I asked for a biopsy which came back indeterminate. I had a hemi thyroidectomy which turned out to be papillary thyroid cancer, tall cell variant, but all was within the thyroid, I then had a total thyroidectomy. The specialist hospital are happy they can treat it successfully so I’ve tried not to worry unduly, I think the biggest issue for me was mistrust from the first hospital telling me all was fine. Your hospital probably hasn’t told you much because they won’t know until they remove your thyroid and get it under the microscope. I know it’s difficult but try not to worry, if it is thyroid cancer it is one of the most treatable cancers with a proven track record. The surgery is ok, you’ll be sore and neck movements will be restricted at first but I was driving again after a couple of weeks. I have a small scar on my neck, a year after final surgery but I rarely think about it. 
I hope all goes well with you, please keep us updated 

That's a whopper. Mine was 7.5 cm and I looked like I was trying to swallow a tangerine whole.

I offer you the words of my surgeon before my op. "It doesn't really matter if it's cancer or not, that's got to come out. You can't go around with a lump sticking out of your neck and if it gets any bigger it's going to block your windpipe".

So get shot of it. Cancer or not, that lump has to go.

You have high thyroglobulin levels because you have a massive amount of thyroid tissue and that's pumping it out. It will do that whether it's cancer or not. So please don't read anything into that. 

Thank you for your response, I find talking to others helps so much as it is quite an isolating experience. 

I am having a hemi-thyroidectomy then if it is cancer will have a full thyroidectomy. What was the wait period in between yours?

How long where you up and going again? I have advised work 4 weeks as any time I get an infection my body goes into early septic shock (last year was 5 admissions) so the Drs are worried about that too. 

Any advice is much appreciated as I find the hospital aren't overly communicative currently. 

I thought it was big and repeatedly told my GP I was struggling to breathe. Just want it out now. Did you have a drain after surgery? They have advised due to the size of it that the likelihood is that I will due to it probably filling with fluid. 

Thanks for the note on the levels as my pathology report has been stressing me out. 

I guilt-tripped my mum into coming to stay with me, thinking I'd just be lying there groaning but I was so well I was making cups of tea and dinner for her in no time. I drove after one week when my stitch was removed. Everything else was pretty much done within 2 weeks and then I went back to work.

My completion was just 4 weeks after the original hemi - but I went private so they were pretty slick. I wouldn't want to suggest that everybody would get it done so promptly, especially if you're not a good healer. 

I always advise to get V-shaped pillows to prop yourself up for the first couple of weeks and stay away from anybody with coughs and colds as you really don't want to be sneezing or coughing with a scar across your neck.

Regarding drains - yep, you get one of them but it'll be out pretty quickly. I won't lie, having a drain removed isn't pleasant, but it's better than filling up with yucky stuff inside your wound.

Thank you, that is helpful. 

Is there anything else you would recommend for recovery? I guess Vest tops and nothing too high neck? Going to buy some V-shaped pillows today as don't have a date yet but want to be prepared. 

This is not the time to display your polo neck jumper collection, that's for sure.

I wouldn't go for vests unless you like them - you can use button up tops as well.

Maybe get some drinking straws for the first few days (I draw the line at sippy cups) as you might not have great mobility in your neck.

Oh, and spoil yourself - get some nice food to make you want to eat (although I have to say, I don't ever suffer loss of appetite but I know some people do.

I had the hemi in Dec 21, total in March 22 and RAI in July 22. I’m due for follow up, has it worked, in April. I was up and about fairly quickly, you’ll probably have a drain coming out of your wound for a couple of days which is fairly gross but once that’s out it’s just a dressing on the wound. I was driving again within a couple of weeks, once I could turn my head and look behind etc. I was off work for 5 weeks I think, I’d literally just gone back on a phased return when they told me it was cancer and at that point I was signed off again. Don’t make any promises with work, see how you feel. I was told I’d be off for a couple of weeks but I needed longer than that. My voice was affected after surgery - it was very weak and I couldn’t project it (I’m a teacher). It’s ok now but it took about 6 months after my last surgery. 

Ask for lots of pillows in hospital to prop you up. Yes tops with plenty of neck room but not too much - they pin the drain bottle on your top which gets heavier as it fills and I nearly flashed people several times! I needed lip balm strangely probably because the hospital was so warm. 

Hi Anne H 

sorry to hear you’re going through this and the hospital have not been in touch too much. I’m also 26 years old and was diagnosed with thyroid cancer last Jan 2022. I was sent for a hemi in Feb 2022 and my total thyroidectomy was April 2022. I think the time between operations completely depends on the hospital and what they find in the first operation and go from there. You will realise you’re stronger than you think throughout all of this, whatever happens. Really hoping it all goes well and wishing you a speedy recovery after the operation xx

in terms of recovery I felt it took me about 4 weeks to get back to a new normal after the operation, especially after the second one. The months following the operation I was so drained and would get out of breath so easily so definitely take it easy as much as you can. Everyone’s experience is different and some people bounce back a lot faster than others so don’t worry if it takes you more time to recover after your operation xx