Thyroid cancer U5 Nodules after US and waiting for biopsy

FormerMember
FormerMember
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I wanted to say hello to everyone that is battling this desease and share my story. I just had a biopsy last Friday but got a letter from the specialist yesterday to announce the type of nodules we are dealing with - U5 malignant cancer. I had an ongoing pain since February this year but it seemed like a small dot on my right side of neck so I kept on ignoring it. I was just staring a weight loss challenge at work, that involved more running, eating healthy etc. Then the Covid-19 pandemic started and the lockdown was announced, so I ignored the main which was increasing and the lump on the side of my neck. I wanted to help people, the NHS, didn't want to be a burdain. I kept on working through pandemic as ours was considered essential work, given we offer laboratory services to pharmaceutical companies worldwide. But the pain was putting me down as it still is. So 5 weeks ago I made an appointment with the GP. I was reffered for routine functional thyroid tests and a scan. The scan revealed the nodules in my thyroid. Due to morphology they were classed as cancer. I was reffered to a head & neck surgeon, took 3 weeks of waiting to get my neck to be seen, and he confirmed the dreadful news, U5 nodules. Next day, last Friday, he booked a biopsy. I am terrified. Since Friday the pain has extended to my left side of neck, and I think my limph nodes under the ear are affected as I have a continuous headache and pain in all areas around neck and head. Last night was the worse. I collapsed in bathroom. I am usually a strong person, but the pain was excessive. I refused to call the emergency line. I guess time is of the essence to get this cancer removed. But the NHS service is so slow... I take ibuprofen, aspirin & paracetamol like lollies. Has anyone else had such pain and goiter? I have another blood test today. What should I do? I am a mom of a 22 months old baby. I took a week off from work, but I can't concentrate... My husband took a second job, as he did not work during covid. The pain keeps me from sleeping. Yesterday I wrote to the surgery again, as they have a askaGP service as they were not answering the call. After I completed the form I got a reply the service is down. As such, my symptoms have worsen but my GP does not know. I will try and talk to her again today. What are my options here? I am scared. 

  • FormerMember
    FormerMember

    Hi. Sorry to hear about your situation but hopefully today will get things moving. However not calling emergency services when that’s happened to you is perhaps not the answer given your history. Persevere with your GP and do not keep anything secret. Put it all on the table. I wish you well. 

  • Hello

    There are a few unusual things about what you've told us. Firstly, I'm not aware that it would be 'normal' to diagnose thyroid cancer on the basis of an ultrasound. Sure, the U5 rating is indicative of issues and would suggest a fine needle aspiration is needed to get more information.  BUT it wouldn't normally be diagnostic.

    Your FNA will give you more information and then that should be clearer - although even FNA cannot conclusively diagnose some of the common type of thyroid cancer. So why is your doctor telling you that you have cancer? I'm not convinced they are following correct protocols.

    The other thing is the pain. Thyroid cancer doesn't usually hurt. It can be uncomfortable but it's not usually painful and certainly not to the degree that you are describing

    Don't worry too much on 'time is of the essence'. Thyroid cancers are slow growing and we've had people who had to wait many months for surgery - for example because it was found when they were pregnant. 

    The pain is the big issue that needs fixing. And it's not indicative that you have cancer. The sooner you get your biopsy result the better. 

    Best wishes

    Barbara

    “Scars are tattoos with better stories.” – Anonymous

  • FormerMember
    FormerMember in reply to barbaral

    Hi

    i am surprised and very sorry that you are in so much pain. 

    I had absolutely no symptoms of my papillary thyroid cancer until a large lump was pointed out on my neck. After an ultrasound and a FNA I was diagnosed with papillary thyroid cancer. I waited 12 weeks for my operation, as the surgeon wasn’t available,  it apart from worry I had no symptoms and certainly no pain. I had a TT and bilateral neck dissection, 4 months later I had RAI.

    Thyroid cancer is very slow growing, so please try not too worry. I hope you have got the answers you need.