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, no news for me just yet. 

I actually managed to talk to secretary yesterday rather than voicemail. She said my results are back now, but she doesn't have access to them. She would email the doctor to chase him up and I will either get a call or a letter.

So I have it in my head, phonecall if good news and letter if bad. Though it may be wrong lol

What will be, will be, I cannot change anything...

You will be fine after the op, the scar will look scary for the first week or so, but then will gradually become lighter and not so sticking out. By World Book day it will be long turned into thin line, so no hope for Frankenstein lol

I am wishing you all the best on Monday. Please write when you can to update

Maryna xx

Hi lovely,

Oh I hope you have them soon! When I had my fake bad news, they phoned to arrange a face to face appt. I don't think the'd give you bad news in a letter. I really hope not anyway. Please let me know when you find out.
 

The only bit of joy I was taking from this whole thing was my world book day plan! It'll work for Halloween though, right? 
 

Thank you for the luck I'm looking forward to tomorrow being over x x

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

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