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.

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

Hi Bridget,

I just wondered how you're getting on? Have you heard anything more?

I'm getting really anxious and feel so helpless. I have an appt on Monday but I've received a letter telling me I have cancer again and I've had so many mixed messages on calls. My referral for surgery was sent by a professor, with 35 years of experience of treating thyroid cancer, marked as urgent, requesting a 2 week wait but the consultant has overruled him and booked a 4 week wait for me. I'm in the process of complaining but I was told today that my surgery could be months as all surgery is on hold because of Covid! 
 

I hope you're getting on better than me x

What a *** excuse that surgery can go on hold because of covid! They operate left, right and center and have been for a while! You go for them, girl! Get their butts airdried!

You can use their cancer letters as main point of complain (you told me I have cancer but did not put me on emergency operation list... do it NOW! sort of thing)

I wonder if it is bad management or what is their bloody problem? 

Hope Bridget is ok

Xx

Hi both,

I hope you're doing okay. I finally had an appt with my surgeon today. He was very blasé about it all, saying the probability of it being cancer is only 1%. This goes against everything I've read and have been told so far. I feel like I'm being pulled in all directions. I've been carrying a brick of anxiety around for weeks!
 

My surgery won't be for at least 6 weeks but it could be months apparently. It's definitely not being looked at with any urgency. If it is malignant, he said it would be follicular thyroid cancer and that it doesn't spread but I've read numerous studies that suggest it can and spreads more than papillary cancer. I don't know how they can be so relaxed when they don't know for sure! I'm just so confused and I don't know where to go for answers. The thought of waiting this long is killing me. 

How are you both getting on? 
 

Sophie x

Hi Sophie, 

I am sorry to hear they make you wait this long, considering they messed up with you so much. 

Is there any chance you can spead up the process, on grounds it causes you so much anxiety you can't live normal life etc etc...?

They created situation with their communication error and must do better than this to correct it. 

I met a lady who has thyroid cancer which has spread. She's been battling since 2012. But her case is one of a kind and for it to go that far she had it from early childhood undiagnosed. It took 30 years.

I also found out that if the cancer growth is less than 2cm, usually they do not remove second part of thyroid nor give you radioactive iodine. Each case is individual of cause, all depends on number of factors, but gave me hope if they do find something, it will be tiny so no more treatment is needed. 

Not much new with me here. The scar has healed and doesn't look that drastic, though still has swallen edges. I have a few aches and pains but pretty much got back to normal. And there is no news on results yet (2 weeks yesterday). I really want to put it behind me now. 

Keep strong and push the bad thoughts away

Hugs, Maryna xx

Hi both,

I just wondered how you're getting on? I hope you've had some news (good news!)

My surgery will be a week on Monday. I'm so pleased it's come around quicker than I was told but I'm feeling really nervous about it. Maryna, thank you - you've really helped to put my mind at rest. What will be will be hey. We're all isolating here ahead of the surgery so I'm trying to soak up some lovely time with the kids. 
 

Do you have any post-surgery tips? Could you eat okay afterwards? (Food is always the top priority )

Take care,

Sophie x

Hi Sophie, I am glad to hear you are finally having your operation! Thanks god they listened to you and didn't put in the end of a queue.

Are you going for Covid19 test? That is vile lol

My nose was aching for the rest of the day -they put the stick right up in your brain..

You will be fine after the op, the throat will ache, but not too unbearable not to eat. I didn't have problems sleeping either. My blood pressure was low for a week after the op, as side effect of anesthetics, and i couldn't shower for 4-5 days. They do not put any plaster or dressing on the wound, you just walk around with Frankenstein neck until its healed enough to have a wash.

I read, sometimes people have drains fitted after the operation and stay in hospital for a night.  I can't say much about it, as luckily I didn't have to.

Also, there are still no results for me, 3 weeks after came and gone. I called them, the doctor's secretary said nothing came from the lab yet. God knows why, may be  they are doing more tests, or understaffed, or busy...plus doctor is on annual leave till Monday.  So may be i will find out next week, if lucky...

All the best of luck and let me know how it all goes xx

Sorry for the late reply Maryna! Any news? I hope you have. You must be going crazy waiting. 
 

I'm still really nervous about Monday but I'll be glad to have it over with now. I had my Covid test today. I'd already had one and this one was much better than the first! My brain doesn't hurt

I was told my results would be 6 weeks after the op but I'm used to being scared with long timescales now so I'll just wait and see. How is your scar looking? I work in a primary school and I'm expecting some funny looks from the children! I'm going to be Frankenstein for World Book Day! 
 

I hope you're well and you have good news.

Take care lovely x