Hello Sophiewren
I'm sorry to hear that you've needed an FNA recently and as a result the Consultant has given you this news. It sounds as if it's been a confusing time for you. 

It might behelpful for you to talk things through with one of our nurses. I'm sure that they will be able to answer some of your questions and give you some advice about discussing your concerns with your Consultant if you're still unsure about things. 

You can call them on 0808 800 4040, Monday to Friday 9am to 5pm. 

I hope that you have som clarification and answers soon. 

Best wishes, 
Jenn
Cancer Chat moderator

Hi Jenn,

Thank you so much. I called the professor I am under yesterday. He said the doctor I saw on Friday 'made a mistake' and 'got the wrong end of the stick'. Thy3f does indeed mean 'indeterminate' so I need an operation to diagnose or rule cancer out.
 

Although it is a huge relief knowing I may not have cancer after all, I feel really distressed by the whole experience. There were many tears and horrible conversations as a result of the mistake they made. They still suspect cancer so I now have the worry of not knowing either way as well as the anxiety of

an operation, which will either remove nodules or part/all of my thyroid (which works perfectly well). 
 

They didn't even apologise for the distress caused to myself and the family and friends I decided to tell. If it hadn't been for my own research, I'd be none the wiser. I would strongly advise anyone reading this to request copies of all results and letters. 
 

Hi Sophie

I'm in the same situation as you, only without the dreadful mis-communication that you have had to deal with. I'm sorry to hear that you had this to deal with on top of everything else and thank goodness you did your research. Seems strange in these modern times that they are not able to confidently diagnose from a biopsy, but there you go. Now just to wait for surgery.

Hi Sophie. No, I haven't heard yet. I think it went to MDT to approve the decision on Thursday and I'm still waiting for more info but I'm expecting to go in mid to end July. It's fair to say that waiting is driving me up the wall !  I found a Facebook group called Thyroid Cysts and Nodules and Thyroid Illnesses.  It seems to be a mixture of people from different countries, but there are some people on there from the UK.  It's been quite useful to see post surgery photos and to read other people's experiences. 

Apparently, a good thing to buy before surgery is a V-shaped pillow as it seems that we will have to sleep propped up for a while after surgery. It also sounds as though it shouldn't hurt too much afterwards.

Good luck for your surgery - sounds like we may be getting them done about the same time.

Thank you, that's really reassuring and I hadn't heard about the V neck pillow - thank you! 

I've been reading up on it all myself but my doctors haven't been very specific with me. My understanding is that they'll try to remove the nodules but if they can't or they find anything else, they'll remove part or all of the thyroid. They'll then test it and if they find it's malignant, they'll remove what's left in a second procedure. I know I should just wait to sit down with them but the waiting around and not knowing what I should be preparing myself for is so hard. Have your doctors talked to you about the operation?

Do you have a copy of your FNA cytology report? 

Sophie x

Hi Sophie - no, I don't have a copy of the report yet but the radiographer explained it all to me at the time. My consultant just told me that the FNA had come back as Thy3f and that up to 30% of these are malignant. He said they would need to remove half the thyroid and that the lab would then be able to check if it is cancer. I have concerns because I was treated for a different type of cancer years ago and am worried that this is spread from the previous cancer, so they have to check mine for other cancer cells as well as thyroid cancer. I'm hoping it's just one of those things and I'm one of the 70% benign.

He had to take my information to MDT to approve the surgery and I was to get more details about surgery dates etc after that. That was over 2 weeks ago so my lack of patience is showing now! He told me he would be writing to my GP and would copy me in, but I'm still waiting for that too.

I was also told that, due to Covid, our whole household will have to isolate for 2 weeks before the operation and one week afterwards (not even allowed out for exercise). So it would be helpful to have dates soon, so that we can plan family visits etc.

Oh bless you. I hope they find it's an isolated thing. If you don't mind me asking, how old are you? I'm 37 with 2 young children. Isolating will be hard, especially if they're back at school! 
 

I only have my FNA report because I'm calling each week requesting everything from the hospital records department. They email it all over to me and I print it all out here so I get to see it all. I've been so disappointed by the lack of communication, I feel like I need to see it to stay sane and to feel like I'm in control. I keep telling myself that although the C word is being used, it's a very slow moving cancer with a great success rate. The professor I spoke to last week said he'd been doing what he does for 35 years and he hasn't lost anyone to thyroid cancer. 
 

Let's hope we're some of the lucky ones. Please keep me posted. It's really helped to hear from someone going through it too.

Hi Sophie. I'm 53 years old. You are really young to be going through this!  With my other cancer, I was 43 when I was diagnosed and that was considered to be young enough to merit genetic testing. I wonder if that's something you could ask your consultant about, given your age?

Hopefully you won't need to worry about your children needing to go to school, as they should close for the summer soon. With luck, that should time ok for your surgery.

Yes, fingers (and everything) crossed, we will fall into the majority who are benign with no further treatment needed. Would love to hear from you as we go through this together.

Thank you. Yes, please keep me updated. Is it Bridget? I struggled to find anyone with the thy3f 'non-diagnosis' online so it's such a relief to have found you and if we keep updating here, it might help someone with the same findings in the future.
 

Take lots of care. I'll definitely keep you posted x