THY4 - to surgery or not to surgery

Hi, 

I hope everything will come back clear!

My situation was similar to yours so my experience may help your decision.

I had an underactive thyroid and was taking the thyroxine medication daily. On the medication, When I've felt brain fogged or depressed it's usually meant for me that my medication dosage needed adjusting.

In February 2023 I found a lump, in my throat and was referred to an ENT consultant at the hospital. The first consultant I saw said it was probably a cyst, (wasn't very reassuring).

Two weeks later I had an ultrasound scan, the person didn't think I had cancer and gave me a fine need aspiration biopsy since my blood test results wasn't available and they didn't want to me to have to comeback two weeks later. 

I then saw a different consultant for my results and what a blessing that I got a new Doctor. He was very reassuring and explained everything in detail. My results came back as boarderline benign and borderline cancer. The only was they could find out if the nodule was cancer was to have surgery the following week and half my thyroid removed. Hearing that news was terrifying but I opted for the surgery. This was in April.

The surgery went well and was surprisingly quick, with only a night's stay in hospital. The pain was very manageable through taking regular painkillers after surgery. The surgeon sent the removed half for testing.

By May 2023 I was diagnosed with staged two papillary thyroid cancer and it was later decided by the doctors that they remove the rest of my thyroid for percaution. There was no evidence it had spread across but infact it had into the remaining half of the thyroid but no evidence of spreading elsewhere. The second Surgery went well.

The doctors decided after the second surgery i didnt need radiotherapy and I am currently having 6 monthly check ups.

Even though the thought of surgery can be scary and being on medication for life can be a pain, it paid off in my case, I hope my story helps you! 

Thank you so much for this reply, and for taking the time to reply.  It was nice to read your experience, I am sorry you had to go through this and equally happy to hear it’s been treated,  that is the most important thing.  Also that you found a doctor who was thorough. 

I am in London and definitely I felt the doctor who did the ultrasound was super careful. I had one done a year ago in Leicester and they said I shouldn’t worry about the nodule and all looks fine and she would discharge me from the system.  I then reminded her that my grandma had it and that my cousin at that precise moment was going through a diagnosis. She said fine we will refer you one more time,  which is this time , a quick fine needle aspiration showed THY4. Were you given one of these numbers?

I went to have a second opinion privately, I just felt like I needed to speak to someone else (grateful to have the funds at the moment to do that) the doctor said that he had never seen a nodule turn from benign to suspicious so he assumed the ultrasound doctor in Leicester misinterpreted the scan.  He also argues they also did 5 years prior.  That’s scans can be down to how you read them. 

I am definitely very scared about the surgery (I’m quite squeamish!) but also have to remind myself about the luck we have that we are able to have this .  Thank you for reassuring me !

Thank you for your kinds words, I'm sorry you have to go through this too, it's very scary to hear you might have a suspicious lump and the waiting around to find out can be unbearable.

It's good you went for a second opinion and that you have been offered the surgery. I've read other people stories where they had to wait a long time before having surgery as an option.

I was terrified about having surgery as it was my first one but the staff are very good at taking your mind off things and keep people calm. My surgeon came and sat with me for a while, he even gave me the option to cancel the surgery if I was having second thoughts. I hope your surgeon does this for you too l, I feel makes a big difference. All I remember before my surgery was been give the anaesthetic and then waking up, I felt abit sore and uncomfortable for the first 5 days after but felt much better once the stitches were removed on the fifth day.

My surgeon did explain the number from the biopsy results but for the life of me I can't remember what the number was now,  sorry I couldn't be much help with that.

Thanks again!  You definitely have helped in calming me ! I have a last appt with my surgeon tomorrow , I had said I wanted to see him once more to completely confirm my decision to take it out vs monitor , I’ve been making my decision these past two weeks.  So will sit again tomorrow maybe running through some worries with him  ! But surgery is booked in two weeks (I had my fine needle aspiration results in May) so I am almost here ! 

I hope everything goes well for you  just think of the positive reasons to why you are doing it if you start to feel anxious closer to the operation, that's what I did and it help me. 

Hi TB_24,

I am sorry you are going there this.

My story is a little bit different but I can share what my results were and what helped me make my decision.

My results came back as THY3f at the start and I was also wondering whether surgery was the right way to go. The surgeon quoted me with a 30% malignancy risk which seemed really high to me to ignore so I had my hemithyroidectomy and thank goodness I did as it came back as Minimally Invasive Follicular Carcinoma. I now had the completion done and am awaiting RAI treatment later this fall. I have started on Levothyroxine but it’s too soon to say how that’s going yet.

If you haven’t already, it might be worth asking your ENT specialist what the possibility of it being cancer is in your circumstances. From memory when I was being walked through the scale the general risk of malignacy for THY4 was around 70-80% or so, but it might be different when your personal circumstances are taken into consideration.

One other reason I opted for the surgery was the mental health aspect of it, if I didn’t have I’d always be worried that it could be cancer.

Hope this help!

Thanks for this. Just seen it now.  I did the hemithyroidectomy in the end (it was done Monday) everything went smoothly so far and I am just healing .

yes THY4 means about 60%-70%, so quite high… and as you said, just seemed like the smartest option re: mental health and physical health . 

Hoping to get the results soon and take it from there … they say 3-4 weeks so hoping it’s before that as that is a long wait ! 

I am really glad you opted for the surgery and they were able to catch it early, that really is the best case scenario. 

Thanks again for taking the time to answer and share your experience, I hope all continues to go well with you, 

I wanted to post an update just in case anyone was looking through this thread .

So I was THY 4, had a hemithyroidectomy and now my biopsy results came back, it turns out I did have papillary cancer , for myself, the good news is that it was contained and that I don’t need any treatment and / or a full thyroidectomy .  

my operation was smooth but I did get some haematoma / blood clot / internal bleeding which I was not told about and was getting nervous as days went by and kept feeling this lump under my thyroid getting bigger and it was getting hard to swallow, I went to A&E and was told this was common and it looked as if it might be at its biggest (2 weeks after this is common) and it wouldn’t need an extra operation , some might need it .  Mentally was a bit hard until I found this out as no one had told me about this being a possibility I was mostly looking out for infection etc etc.  so I thought this experience could be helpful. 

I send everyone so much strength with all they are having to deal with . 

best