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.

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. 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

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?

Yes, they prescribed medication, which replaces the thyroid and yes, they monitor hormone and calcium levels.

A lot of people take thyroid medication, either because they have had their thyroid removed for various reasons or because their thyroid is underactive. I've only found this out since having mine removed and a number of people have mentioned either that they had theirs removed or a family member had or that they or somebody they know is taking medication for an underactive thyroid.

I will add that even if thyroid cancer spreads to the lymph nodes, it makes very little difference. It does increase the risk of recurrence, but the odds are still in favour of it not reccurring, but it doesn't affect survival rates.

Hi [@shs1]‍ I’ve just found you having had my biopsy results of 3a confirmed today. Surgery recommended to remove lump and left side of thyroid which will be scheduled for within 4 months. How are you doing?

Hi CazStu,

I am due for a hemi thyrodectomy on Monday 6th June. Feeling pretty nervous .

Sending you lots of love and luck. I hope it all goes well. Please keep me posted. ️

Hi [@CazStu]‍ 

i hope you are keeping well. My biopsy results were thy 3F. At any rate, the operation went smoothly and they removed half my thyroid alongside the nodule. The nodule was measured at 4.2cms, so pretty big.

I got home and after 2 days contracted covid fr9m my niece who had come to help whilst I recuperated! So, all in all, not good to say the least. Each covid cough was painful for my healing scar.

I had my follow up yesterday, three weeks exactly after my procedure. Good news was that although the lump was indeed cancerous, it had been removed completely. However, the cancer is an extremely rare form of aggressive Hurthle cell carcinoma which had invaded the blood vessels. Basically, the cancer has escaped through these vessels and also the surgeon spoke about follicular compromise (not sure what that means as yet).

He is recommending surgery to remove the remaining thyroid and then start radiiodine treatment almost immediately. He doesn't want to wait. So I am processing.

option is to go with this. But this is a big undertaking based on they cannot guarantee 100% success. The other option is to wait and watch for any occurrence of cancer - this could attack any part of the body.

At the xxxxx, they operate under a medical team environment: all the consultants and surgeons gather on Wednesdays to review case by case. They then submit their consensus view for recommendations. My surgeon will come back to me next Wednesday upon their ruminations. He is certain they will recommend the radio iodine option.

at the end of the day, it is my decision.

sorry about the long post.

But please note that this is not a normal outcome. Most posts here I have read lead to a positive outcome.

I shall update next week .

best regards and healthy wishes to you

Sorry to hear about the result you got.

I will say radioiodine treatment is nothing to worry about; it's basically just taking a capsule. It's sort of annoying because of the isolation restrictions and all but it doesn't hurt or make you sick or anything. I did get a nosebleed about 10 or 11 days after it, but that was the extent of the side effects.

Hi [@shs1]‍ 

Thank you so much for taking the time to reply to me. I hope you are continuing to recover well, despite the toll of Covid on top surgery - you poor love! 
 

Gosh you've been through a lot and given your results, have a lot to process. Have you made any decisions?

I'm just getting on with day to day stuff and waiting for my op, which I presume will be September time. I've definitely got symptoms as well as the visible lump: hot flushes and sweats; disrupted sleep; fatigue; constipation and now a sore neck and pins and needles in the corresponding leg! None of it might be related but they are new symptoms. 
 

I decided to tell my teenage girls last week as exams had come to an end. They were upset but agreed that mum 'might/ might not' have cancer was easier to digest than last time when, Nov 2019, I told them I had oestrogen receptive breast cancer. Worryingly my 53 year old brother has just been diagnosed with stage 2 prostrate cancer so we're sick to death of the C word. 
 

My turn to apologise for the long post! But it feels good to chat with someone that gets it. 
 

sending lots of healthy wishes your way x

Hi [@CazStu]‍ et al

a quick update: I had a total thyroidectomy on Monday 1st August. They had warned that I may need 3-4 nights at the hospital but the operation went well and calcium levels and parathyroid hormone levels were good and steady so I was allowed home the next day! Hurray

a few things to note: the pain in the recovery room was so much more than the original hemithyroidectomy - apparently because going through scar tissue second time around. So, if you are in the same situation, that is, you have already had a semi thyroidectomy, I would strongly urge you to ask for extra pain medications to be available in the recovery room (in my case they had to go and find the anaesthetist two time because I didn't get enough at recovery).

also, I was advised(too late) that I should have had a stool softener prior the evening of surgery and the evening after surgery. Constipation is the enemy here. So be prepared

i was given thyroid medication straight away. A review with bloods scheduled in 6 weeks

followup is in two weeks - to stage the cancer and then to be referred to an endocrinologist and also back to my oncologist to prepare for radio iodine treatment 

I am happy to answer any questions you have. In the meantime, be strong, informed and of positive mind
 

best wishes,