Hi
Emmm not really sure how this will help but worth a shot.
October 2023 I had an asthma attack and a large lump appeared on the left side of my neck. I had a biopsy in November 23 and then scan and bloods in June 24. All came back normal and was told I didn't need surgery.
I insisted they do it as I was struggling with my breathing. NHS said I would be waiting over a year as it was not necessary surgery so I bit the bullet and forked out to go private to get the left thyroid removed (which turned out to be the size of a fist). Lucky family helped pay for it.
4 weeks after surgery I go for my fallow up alone to be told they got it wrong and I had follicular T3a thyroid cancer. 4 weeks after that's I'm back in getting the the rest of my thyroid out.
6 weeks later and I have no idea whats going on . Do I get regular cancer check? Do I get regular thyroxine checks?
I have had no contact from my GP or any other doctor since the surgery. I feel lost scared and just generally shit and what's the point being here if no one will help me.
Hi Migi, I'm so sorry you've been thrown into this situation.
Could I first suggest you ring the Macmillan helpline, they will be able to advise in many ways.
If it is follicular variant, usually they follow up with Radioactive Iodine treatment to mop up any stray cells. Your private consultant should have explained this.
I expect there may be communication needed between your private consultant and your GP now. You may need to step in and facilitate this to make sure you get follow up care, unless you plan to continue to pay privately for this.
Also yes we usually get scans at intervals. Blood tests to check your thyroxin levels every 8 weeks to start with, until you've stabilised on your Levothyroxine.
I would chase your private consultant's secretary for any follow up or ask if they've sent a copy of the clinic letter to your GP.
Hope this is of some help. X
Medullary Thyroid cancer dx May 2023
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007