Thyroidectomy revealed Papillary cancer

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Hey guys,

New to the group here, so thank you for taking your time to read my story.

I have suffered with hyperthyroidism since 2019 and the plan was to eventually receive radioiodine therapy but I became pregnant with my now two year old son, and because of the pregnancy and breastfeeding we held fire and I was on PTU.

Skip to just a couple of months ago, I requested surgery due to my son and radioiodine therapy not really being feasible. I had a total thyroidectomy on 11/08/22. I was told the surgery went well, but I did have damaged vocal cords temporary which was tough with recovery.

Now only last week, I was called back in on the Friday and my surgeon informed me that when she removed my thyroid she felt nodules so sent it off and it's come back as papillary thyroid cancer.

She said I'd be hearing from oncology soon and the next course of action would be radioiodine therapy.

I now have an appointment with a Macmillan Clinical Specialist Nurse this Friday and Oncology on Tuesday 1st.

My questions are has anyone else been through this? What should I expect Friday and then Tuesday? And what if I am to have radioiodine therapy? I am a single mum to a two year old.

I'm annoyed it's taken them 2.5months to tell me this, after my surgery as well!

Many thanks guys.

  • A similar timescale to me, I found lump in right thyroid at the end of January. Had total removal end of June. Oncology appointment july/August. Found out full details of my lump/lumps from oncology however surgeon did tell me earlier before in the year that the needle samples from ultra sound scans in April suggested papillary cells in the lump. Today I'm sitting in my room at hospital having successfully swallowed my radio active capsule this morning. Got 2 nights isolating before a full body scan on Thursday. Expecting to go home after that. But the time scales do sometimes seem long but oncology don't get the true detailed results until the removed thyroid is dissected.

    All the best 

  • Thank you for your reply. How are you doing with your treatment? How are you finding it? I hope you're doing ok.

    I am very impatiently awaiting my appointment with the Clinical Specialist Nurse Friday.

  • It's okay, I can put up with the isolation for couple of days. Slept well as you don't have the usual nurse observations done as no one can come near you. So no being woken up at 2am for blood pressure etc.

    This morning my eyes are quite dry so used some eye drops and had some sour sweets yesterday and more today to help get radioactive out of salivary glands. My throat is a bit sore but could be the hospital dry air.

    Been drinking a lot of water as it comes out in urine etc.

    Hope you get next appointment soon.

  • Hello, it’s good to see that you’re coping with the treatment.  Mine was in May.  I chewed gum and sucked sour sweets and drank soooo much water!  Also make sure you shower 2 or 3 times each day - it helps pass the time and  is said to help the radioactivity leave.  At the end I only had to sleep alone for one night at home as my level was so low.   

    it certainly is a strange treatment! 
    x