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,

I can't imagine they would give bad news in letter. It would definitely be an appointment letter. They promised to call me with good news though.  Apparently they are the only department in our hospital which takes time to call patients and tell them if it's good.

Anyway, hopefully it won't be much longer wait. I shall find out this coming week, as you will be saying goodbye to yours.

One month later I am having a neat deep looking scratch for a scar. Not much for Frankenstein, I am afraid lol

I am wishing you all the best for tomorrow, no delays on the day and no drains either!

Write when you can

Maryna xx

Hi Maryna,

Do you have any news? 
 

My op went well but it looks and feels so much worse than I've seen in other people's pictures and experiences. I truly think I might have a shot at Frankenstein! How long did your soreness last? I'm finding it really hard to sleep and get comfortable. It feels like I might tear it open when I move

I was told I'd be in for a 6 week wait for results. I'll be going for a blood test every 2 weeks for the next 6 weeks to check my thyroid levels. I'm not sure they checked my calcium post op though. How was yours checked? I was also told I'd be put on TSH immediately and there's been no mention of that. I was too groggy to remember at the time but I'll give them a call. 
 

I really hope you hear soon. Please let me know.

Sending love x

Hi Sophie, I am glad you had it out. It wasn't as bad with pain for me as it is for you from sounds of things, it started to reduce after 3 days or so, though still feel it a bit after 5 weeks.

 Also no hormon replacement has been given to me post op, or calcium checks. They only checked all that before the operation so far..

Are you sure they didn't cut out the whole thyroid instead of just a half? That would make sense with hormon replacement and blood checks every two weeks.

Also the level of pain you have, I read it's worse than with partial...

The secretary called me on Monday, saying on Thursday  (tomorrow) they will be discussing my results on MDT meeting, then will let me know. I freaked our initially, but then it occurred to me that if they found something sinister, they would not doddle around and let me know by now. Actually it works out just as they said to you - 6 weeks later... Anyway, one way or another, I have no control over it. It is what it is...

Wishing you quick recovery. Let me know how you get on

Maryna xx

Oh I hope you find out soon. I bet it's killing you knowing the results are there. 
 

I'm feeling much better already. I think day one was a bit of a shock but once the dressing was off and I gave it a wash it wasn't so bad. The bruising and swelling is going down a lot now too. Moving it still tricky but I'm getting there.
 

They definitely just took half. They spoke about TSH before I even had my operation date. He said there was no downside to taking it - no side effects and it might even give me more energy. I don't know too much about it though. Although my thyroid count has always been fine, perhaps it was at the lower end of the normal zone? My surgeon is due to call me in 6-8 weeks (with results hopefully. He said he would just call if benign) so I'll discuss it with him then I think. 
 

Take care and have a lovely weekend if I don't hear from you before. Crossing everything for you Maryna x x 

Hi Sophie, 

I am glad to hear you are better now. They told me not to shower for a week or so, and that was a big "feel better"factor.

Also I didn't have any dressing at all, just a raw wound which I had to put antiseptic cream twice a day. Luckily the stitches were disolvable  but still i was a good old Frankie vs serial killer victim, which got away lol

I was planning to ask about my hormone levels tests but it doesn't look like thet are calling me. May be they haven't had a meeting yet, or may be results aren't good to call about :(

There are possibilities of them still to call later, or just being too busy, or not being bothered or call tomorrow, all may be's which I really had enough of.

I hope not to kill anyone in the mean time. Really need this stone lifted off my shoulders, even if it's bad results... not knowing and being out of control is the worst.

I hope you carry on getting better and will be up and running in no time.

Maryna xx

Hi Sophie

I hope you are feeling better today and not too sore.

I finally spoke with the doctor today  after another chase call to secretary. 

Well, it's still a limbo state for me from looks of things. They only know that they do not know.

I have a complicated case and they are looking for second opinions. Basically it has cancer features and non cancer  ones, just like my biopsy...its not a full blown cancer, but encapsulated still, and not invasive. He said, it's like when you have a smear test and get "dysplasia "result kind of thing. I asked what type, and he said they are looking for something between follicular carcinoma type bla-bla and follicular something or the other neoplasm, which can be benign or malignant. 

And they don't know what to do with it. There is a chance they let me keep my second part of thyroid, but I need to be ready if they say to cut out.

So they will run additional tests and get a few oncologists and cytologists look at it and it will take another 2 weeks.

So I am back from where I began, pretty much, with the difference, I know it's not a mature cancer from looks of things.

Every year they have a couple of cases like this, and it happens to be me

Hopefully you have a more straight forward answer. 

Maryna

Xx

Ps: I must be a Chernobyl mutation  lol

Oh Maryna, bless you. I'm so sorry you don't have any answers. This is such a nightmare! How is it so complicated?! You must just be extra special, there's no other explanation. It definitely sounds like there's something positive to take from what they've said though. I'm taking comfort that, even though it could be cancer, they will almost certainly treat it. It's a tiring journey though, that's for sure! It's not an easy thing to understand and getting my head around it all seems to be taking most of my energy.
 

I spoke with the hospital today too. I have a telephone appt through with my surgeon on 12th Oct - that's 8 weeks from the surgery date but they said they should contact me sooner if there is anything significant to report. This feed is so long now, remind me, were you thy3, thy3a or thy3f?

I'm feeling so much better thank you. The scar is looking much neater already and I'm moving more easily. I'll milk another day of coffees from the husband I think though  

We're getting a take away tonight to cheer ourselves up after a miserable week of recovering. I hope you have a lovely weekend x x

Hi Sophie,

8 weeks is a killer wait. At least you have a date when you get an answer and that is good.

Mine is turning into 8 weeks now, without specific date for answer. I guess that's why they tell you such long times, in case if it is like mine, where there is no black or white, but complete grey. 

It was thy3a initially -and now suspicion for follicular cancer, so here you go! I thought it would be a different one. But thanks god, it doesn't look like medullary, from looks of things. For that I would need to have some neck dissection in a different hospital, whatever that means, but it sounds scary.

Have a great take away and squeeze the last bits of coffees out of hubby, while you have chance hehe

Keep me updated xx

N

Hi Sophie,  I messaged you, but it's an update for forum.

I just had a phone call  the doctor confirmed I have papillary thyroid cancer, with operation on 29th of September to remove the rest of thyroid, followed by RAI weeks later.

There is no sign of invasion or lymph spread but a capsule disruption in one place right on the edge.

My tumor is 4.5 cm

I have two photoshoots booked for end of September and one for beginning of October. It is strange, how all I think about is this...

Hi Sophie,  I messaged you, but it's an update for forum.

I just had a phone call  the doctor confirmed I have papillary thyroid cancer, with operation on 29th of September to remove the rest of thyroid, followed by RAI weeks later.

There is no sign of invasion or lymph spread but a capsule disruption in one place right on the edge.

My tumor is 4.5 cm

I have two photoshoots booked for end of September and one for beginning of October. It is strange, how all I think about is this...

Hi. I just wanted to update here too. 
 

My Thy3f led to a hemithyroidectomy which has healed really well and, following a 6 week wait, I had my results yesterday. 
 

My nodule was encapsulated and I was diagnosed with 

Non-invasive Follicular Thyroid Neoplasm with Papillary-like Nuclear Features (NIFTP). 4 years ago, this would have been treated as cancer but it poses such a low risk that they don't need to treat it now. It was explained to me as cancer in a very strong bubble which could eventually leak. They stage it from 1-5 (1 is no worries and 5 is cancer). Mine was staged at a 3/4 so it's good that it's gone because it could have turned into cancer at any time.
 

They also found a 3mm micro carcinoma outside the nodule but they were not concerned about it.

I have a similar sized U2 nodule on my remaining lobe so they will be putting me under surveillance for 5 years. I've been given a low dose of levothyroxine to help me feel better and to possibly stop my other nodule growing or changing. I need a CT scan to check that they have everything out so I'm waiting for that to come through.

I don't feel like I have the all clear until the CT scan is done so I'll hold my breath just a little longer. 
 

All in all, I feel really lucky that they caught it when they did and that it didn't get the chance to metastasis into anything more sinister. It's been an awful 5 months of tests and false diagnosis (I was told I had cancer twice) and my heart goes out to all of you who haven't been so lucky.
 

Sophie x

Hi

thanks for sharing your experience and sorry to hear that it turned out to be cancer. 
 

I am going through a similar thing at the moment. I discovered a lump around 3cm long in my neck. Got an ultrasound within 2 weeks (lump measured 5cm x 5cm x 2.5cm) and was sent for a biopsy. The biopsy came back as benign which is great but I have opted for surgery anyway based on size and him telling me it will probably grow bigger. it's not too much bother other than feeling a click when I swallow and a strangling feeling when reaching up high! Also if talking in a low voice my voice goes a bit husky and weird.

Since my ultrasound I would say it's grown around 2cm (now around 7cm long). Should I be concerned and/or let them know? They seemed to think it has been there for years but I disagree! I don't want to pester as I understand there are cancer patients who need to be seen first. 
 

I should add I've had my pre-op and have been told 4-6 weeks ish! For surgery. Anxiety levels are rising.

hope you are coping ok after surgery and no more scares

thanks for taking the time to read this

nicky

Hi Nicky,

I am sorry to hear that you are in similar situation. 

You are doing the right thing, getting it removed. I know how frustrating those delays and waits are,  thanks to covid. Hopefully it will turn out to be ok. They didn't give me that option after my first biopsy, which showed bening. They just said, they would do another check after 6 months time. And they only did it, because I rang the bell about the thing growing. With covid etc I am sure I would still be waiting for that check up, no doubt. 

So well done you, for rattling the cage, and carry on doing it, if you think something is not quite right. It is your health, and noone else can be in charge of it.

I was fine after the hemithyrodectomy, didn't need any medication or anything.

Now as they removed the remainder of my thyroid,  I am on relatively high dose of levothyroxine, and have been for the last half a year. I recovered well and quick after both surgeries, and feel good generally. There are some side effects,  like I am much hotter than usual, have more headaches, anxiety and sleep is a bit worse with more nightmares. But I am able to function normally with my daily activities, and do not feel tired like I was afraid I might.

In May I am going for RAI treatment,  which has been postponed due to covid.

I hope it helps. Wishing you the best of luck, and please do an update on how you get on. 

Regards Maryna:)

Thanks for your reply. 
 

must be hard going having it completely removed but that's good it doesn't stop you from living life as you want.

they told me that there would be no more monitoring if I didn't have the surgery and I would be discharged which terrified me ‍♀️ 
 

will let you know how I get on. 
 

thanks and take care

nicky x

Hi all

I have found some reassurance reading through this post thank you for sharing your experiences and I hope you are all well. I am 39yr old female and have a thy3f nodule too. My sister had follicular thyroid cancer when she was 25yr old so I am convinced I have this too I have my op on Monday coming to remove the right side of my thyroid. I feel like my whole life is on hold right now and am so scared. Thank you so much for sharing your experiences. I just felt that I needed to comment

Lots of luck for your surgery on Monday. I also found it really frightening but now it's done I feel so much better knowing it's gone. As soon as I got to the hosptial I felt better as I could see everyone else was in the same boat and there were so many people taking care of me. Mine turned out to be a benign lump but with cancer cells inside. Looks like I will be keeping my half a thyroid and just being monitored closely. I feel in good hands and I'm sure you will be well looked after too  
Fingers crossed for good news xx

Thank you Nicky. I just had a phone call today to say my op has been delayed until 19th as my consultant has to self isolate. I was all built up too. I suppose it's only 2 weeks though. Pleased you are ok xx

Hello all, I have just found this thread. I have been diagnosed with THY 3F and have been advised to have half my thyroid and  the lump removed. However, the consultant was very blasé about the ramifications should results show cancer present. So I am going for a second opinion. In the meantime, I can feel small nodules on the opposite side of my throat to the large nodule and I am truly frightened that little nodes of cancer are forming.

please can you post updates on your operations. I hope all went okay.

regards

Sheila

Hey, my surgeon was also very blasé and in my case, there was no doubt. It was clearly malignant. The reason for their reaction is probably that thyroid cancer is...well, not really usually serious in the way cancer usually is. The most common forms have very high survival rates - close to 100% among under 50s - and there is rarely any need for chemotherapy or radiotherapy. It's generally "just" a case of removing the thyroid.

I had my full thyroid removed as the biopsy showed malignancies. I was in hosptial nearly a week, but felt pretty much fine after about 3 days and was pretty bored for the last few days. I took a month off work as I am a teacher and really needed both to be able to turn my neck quickly and for my voice to be 100%. Even the first couple of weeks after I returned, yard duty got interesting as I couldn't make myself heard across a busy yard (it was fine in the classroom and I honestly didn't even realise my voice was weaker than usual until I had to call across the yard) and I had students running around, saying "Miss says you're to come away from that" or "Miss says it's time to go in to class."

It is now two years since my operation - well, two years and three months and...it has really had no effect on my life. The worst thing was the stress of it all. My neck still gets a bit tingly sometimes, but...that is mildly annoying at worst.

I am so glad you have had a positive outcome. Did they prescribe medication since you have had the whole thyroid removed? Do they monitor hormone and calcium levels?