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'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

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 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

N