Thyroid cancer diagnosis

FormerMember
FormerMember
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Hello. Where to start?! My daughter discovered a lump on her neck in February last year. Because of Covid and the scan department changing her urgent referral to non urgent, she didn't get an ultrasound scan until December, then had to have a biopsy beginning of January this year. 2 weeks ago my 18 year old daughter and I were told by a thyroid consultant that she had papillary carcinoma in her thyroid. We were told it came as a complete shock to the team as they weren't expecting that to come back in the biopsy report as she has overactive thyroid. Apparently having overactive thyroid and developing cancerous nodules doesn't really happen? Yesterday, we saw a thyroid surgeon, who dropped a bombshell and said he's not convinced it's cancer! Has anyone else had this situation where you've been told a biopsy may be wrong?? He's told us the only way he'll know for sure is to remove the right side of her thyroid, which he's hoping to do the middle of next month. It's seems so far away!! The last two weeks after initially being told it's cancer were hard enough, and now we're being told to wait even longer. I'm so confused and scared for my daughter. 

  • Hello mountainmum, sorry to read this, you must all be quite confused and concerned. I don’t know anything about overactive thyroids (mine was under active before I got cancer) but I did have a lot of confusion about whether or not I actually had cancer before my thyroidectomy. They were talking about the grading of the biopsy being a ‘5’ which meant they were pretty sure it was cancer but my consultant made a throwaway comment about not being sure as you can only be sure once you’ve had the tumour removed. It might be that your daughters biopsy is a lower grade (3 for example) where there is significant uncertainty about if it will be cancerous or not. I knew nothing about the grading of the biopsy so went into surgery very confused about if I had cancer or not. 
    Have you been given any details of a specialist nurse at all? It may be helpful to talk to them and ask them to explain the thinking behind what you’ve been told. 
    regarding the wait, if it is cancer then the tumours are normally very slow growing so the delay shouldn’t cause any problems (although it’s super stressful having to wait). 
    Take care x

  • FormerMember
    FormerMember

    Hi Mountainmum, 

    It's such a whirl wind to be told it might be cancer and then it might not!

    After my biopsy which was in February 2020, cancer was never mentioned, but they said it was concerning (was graded as a 3). The surgeon told my mum in March that they would want to do a partial thyroidectomy to take out the right side to check it. I wasn't living at home at this stage as I was finishing my masters dissertation. Because of this, the surgeon agreed with my mum that they wouldn't tell me until I'd finished my degree that May. So I already had this time delay without knowing. They hoped that it could be done soonish after I finished uni that May. Covid was in full swing by then though, so the surgery was delayed until the end of October. A few weeks later is when I was told it was cancerous. Because of the size of nodule they removed they want to do a full thyroidectomy now. It was hoped it could be done in January this year, but its been pushed back until an undefined date.

    Hopefully my story helps you not to worry as much about the time delay. And remember if there is cancer it is a very slow growing cancer. I first noticed the lump in my neck 2 years before it got removed and I'm completely fine. 

    Kathryn 

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