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Thyroid UK
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Cancer diagnosis

Just come back from seeing Mr Nicolaides at HDH. He thinks its cancer though won't know till they operate. Meeting at York on 5th September to discuss 😪. Apparently the remove the lymph node first, test it for cancer, if its positive then most of my thyroid will go at the same time. Anyone experienced this? Not terribly worried about the surgery, just want to get back to normal ☺

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Hi, I wrote a long post and then it disappeared! Hello Lindsaydawson, I had thyroid cancer surgery. The good thing about it is that it's treatable but don't get too excited because it does take time to get back to 'normal' afterwards.

In fact I would say that you have to establish a new 'normal'. Some people sail through and lets hope you do but many people struggle to get back to 'normal' life afterwards. At the end of the day, cancer diagnosis is still a worrying time.

We are often not told about the impact of thyroid imbalance which can have a big impact on all of our physiology so be kind to yourself and don't beat yourself up if you don't just bounce back to 'normal' but lets hope you do.

You may feel quite well afterwards but then hit a wall a few years later. There is a sort of exhileration of getting through surgery and getting a good prognosis but living without a thyroid, forever, can be tricky for some people.

I went back to work after 3 weeks and did not feel well, gradually I improved but then felt very unwell further down the line. You may have ups and downs so be prepared. However, 10 years down the line, I'm fine and working full time at over 50 years old so I'm sure you'll be fine too. Just be kind to yourself, don't expect too much, just focus on the things that are important each day. Here's hoping it's benign!

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Thank you for your reassuring post... I am up for the challenge as long as I can get some energy from somewhere! Its quite draining, but i can see a light at the end of the tunnel. Was lovely to be actually listened to by the consultant, not just fobbed off!

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If diagnosed with cancer, this is the beginning of your journey but we're all here to help.

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Had thyroid removed 16 years ago to to papilliary thyca. Generally well, although 150 mcg thyroxine was really too much for me and subsequently I have had various problems which, at the time, I did not contribute to the dosage . I am now taking 100mcg which is ok. Wish I had know about this forum all that time ago. It's a Godsend giving very good advice and support. I would like to take NDT instead of Thyroxine but I am scared to but that is another story. Good Luck you may/may not have some hiccups but the future holds well for you.

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Lindsaydawson603,

I had an inconclusive FNA but hemilobectomy was going ahead anyway as the nodule was compressing my trachea. Histopathology found the nodule to be malignant for Hurthle cell carcinoma so I had completion thyroidectomy 3 months later. The cancer hadn't spread to the other lobe and had remained encapsulated in the thyroid so I didn't have to have any lymph nodes removed.

I was making a good recovery on Liothyronine but didn't do well when I was switched to Levothyroxine after RAI to ablate any remnant thyroid cells loosened during surgery.

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My consultant seemed to think that TT is best as these things reoccur later on. I have no idea!

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Lindsaydawson603,

If my FNA had shown malignant Hurthle cells I would have had total thyroidectomy too and that would have spared me having a second surgery.

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I suppose thats the mystery! We don't know what they will find.... X

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