New diagnosis here.. hello all

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My journey so far.. 

Initial appointment following e consult after recognising a lump in my neck - 19th September

Blood tests - 20th September - showed Elevated TSH with low FT4 consistent with primary hypothyroidism.

Ultrasound- 21st September - small , irregular wall hypoechoic nodule measures 15x 9 x 14mm seen in the right lobe of thyroid gland with small extension noted to superficial neck muscle. No vascularity in it.

Results Appointment- 24th September- 2WW submitted for Rapid Access Clinic

ENT Consultant - 5th October - Voice Box examination, Endocrinology Referral, Radiology Referral for Biopsy.

Sunday 13th October - Ultrasound with FNA - Consultant graded at U2 - advised nothing sinister from US and initially refused to complete FNA but after some time and challenge agreed.

Tuesday 29th October- Appointment with Thyroid specialist. My case had been discussed at MDT on 28th October- Radiologist at MDT advised US3/US4 and cytology is Thy5 - Papillary thyroid carcinoma.

27/11 for hemithyroidectomy possible thyroidectomy and level 6 dissection… then next steps. I have started on Levothyroxine Teva brand which seems to have caused me some tummy troubles which I’m hoping will settle.

I was looking for any recommendations people might be able to share to make the upcoming journey smoother, useful snacks, recovery tips, what to expect etc. 

if you’ve made it this far - thank you 

  • Sorry that you’ve found yourself here like the rest of us. I’ve also got papillary thyroid cancer but have had both my hemi and full thyroidectomy and had RAI. Now just waiting to hopefully get the all clear in March/April. 

    The surgery went well for me and both times I only had to stay in for 1 night. I found a v neck pillow was really good for getting comfy as it can definitely be quite saw the first few days. The pain lasted nearly 2 weeks for me but just keep up with regular pain killers even if it starts to feel a bit better. Eat lots of soft foods for the first few days like jelly, jacket/mashed potatoes or soft pasta. As my throat was quite sore too for a few days. 

    happy to have a private chat if you have anymore questions or anything. 

    for reference I live in Brighton and am 24, so of course everyone’s experiences can be different!

  • Thank you for taking the time to reply, i will definitely reach out with questions. 

  • I had a total thyroidectomy 2 years ago for graves disease it was from this that they found an incidental finding of papillary thyroid cancer. I'm on levothyroxine and it took a while to get my dose right. 

    I took some pj's, loose v neck t shirts with me to wear as you have a drain post op. My kindle and magazine to keep me entertained. To be fair post surgery I just wanted to sleep. 

    I was OK about having surgery being put to sleep with anaesthetic scared me the most with it all.  

    I was advised to use vaseline on my scar which worked really well.

    Hope your surgery goes well xx

  •   I think the thought of the entire surgery was actually worse than the reality in my case.  I did have my thyroid totally removed but in 2 separate surgeries!  This was as result of finding papillary cancer but with a follicular variant after the right side removal.    My main ongoing issue is the impact  on my voice.  I don’t have much power  in it and if I talk a lot it gets pretty hoarse! I’m not sure after 12 months now  that it will improve. I have not had any medical advice about it despite seeking help   I’m assuming this is as good as it will get.  Maybe ask about this as there may be things that can help you in this respect should you encounter any voice issues.  
     
    wishing you all the very best for your surgery and a speedy recovery xx

  • I’m the same with the anaesthetic being the part I’m most worried about at the moment, did you find anything in particular that helped?

    thank you x

  • There was a lovely man who took me down to the anaesthetic room.  He was very cheerful and just told me that I was blessed to be able to have the operation. It was simple but very helpful so I went to sleep repeating in my head ‘I’m blessed I’m blessed I’m blessed! It worked in keeping me calm .  I also though that by the same time the next day it would all be done .  The surgeon also said that the more positive that I set my mind the better I would feel and she was totally right.  
    I’m with you for this  

     You  can and will do it and before you know it, the operation will be done and you will be in a better place than you were before .  Xx Jan