My daughter has just been diagnosed.

Hi Stocky44

I am a relative newcomer to thyroid cancer - it's been less than two months since my diagnosis. But the process until the diagnosis was confirmed took quite long, from suspicious scan, to consultation with a head and neck specialist, to a fine needle biopsy, and back to the specialist.

I totally understand the running away - I felt I had to apologise to the key-worker nurse who I told I wanted to get out of her office rather than listen further and ask questions! I've had my thyroid and some lymph nodes removed since then, and see an oncologist in 10 days time.

It is scary waiting for each next stage of the process, and I don't have lots of advice, but what has worked for me is not to second guess things, and to stay off google. I have only dealt with the information presented to me at each stage, and have not entertained the what-ifs, and what could be, and taken it one step at a time. The doctors also seem reluctant to map out a definitive way forward - information from each step informs what comes next, and things are carefully considered by a multi-disciplinary team. In my case, some things have changed along the way.

This online community has been fantastic and a real life-line. No judgment, just lots of support, kindness, and understanding. So welcome to this space, although I appreciate you might not like why you are here.

Wishing you and your daughter all the best for what lies ahead.

Thank you so much. That's really good advice.

One step at a time. Frustrating but the only way I guess.

Thanks and all the best to you too.

I am no expert, but can tell you a little bit about my experience.

I knew I was having my thyroid removed along with some lymph nodes. That was all I was told before my operation. I had a very experienced surgeon, who was very calm and reassuring. 6 weeks ago I was operated on, later in the ward the surgeon told me he had taken out more lymph nodes that he had expected to and I was in surgery for 41/2 hours. I left hospital 2 days later with a very neat scar and an incredibly stiff neck. I wasn’t in pain. I recovered fairly quickly, and am back running 5 miles twice a week.

I had to go for a CT scan and was phoned to say there was no spread. 5 weeks after the operation I went back to see my surgeon. I was given the results of pathology and told I would need RAI therapy. 

My experience is different from others on here in that since diagnosis I have only seen my surgeon. I have now been passed over to another department waiting to find out when my appointment will be for my RAI therapy.

The thing I have found most different is the waiting and unable to plan things until I get dates for the next stage.

I have found this website very useful along with The British Thyroid Foundation. I like to know what is ahead of me so have googled but only UK sites.

Good luck

Hi and thanks

The waiting and not knowing whats in the future is very difficult isn't it. We're being as positive as we can but blimey it's shock.

This site though, in a very short time has restored my faith in humanity. 

All the best and thanks for taking the time to reply. Really appreciated.

Hey there Stocky, 

Welcome to the site, I'm glad you found us though I'm sorry you had to. 

I just wanted to say, there's still every chance your daughter doesn't have thyroid cancer. From what you've said, she's only had an ultrasound on her thyroid that's shown up a couple of lumps? Ultrasounds cannot diagnose thyroid cancer, and in fact 90% of thyroid nodules turn out to be benign.

Thyroid nodules are very common, especially when our bodies are going through hormonal changes. So for females, they often show up during puberty, pregnancy, and the menopause - like we don't have enough to worry about during those times of our lives!! At 17, your daughter is at the prime age for the discovery of thyroid nodules brought on by puberty. 

We see it quite often here as well, that nodules the ultrasound thought would be benign turned out to be malignant, and vice versa they looked malignant and turned out to be benign. 

The next step for your daughter should be an FNA, which stands for fine needle aspiration. All this is is where she lies on her back on a bed, with a towel under her neck to tip her chin back. Then a long thin needle is inserted into the thyroid to take some cells for testing. These results should give an indication of if it's cancer or not, and from those results they will decide on if they need some more samples, if everything is fine and benign, or if she needs what's called a diagnostic hemi-thyroidectomy where they take the half with the suspicious lump out and send the whole thing to the lab. 

So the next appointment should be for the FNA, then back to the consultant for the results. Does that sound like what they said, or did you literally run away and need to go back for the first appointment in full? 

Lass

Xx

Hi Lass,

Thanks for that. I really hope you're right.

She's had the FNA and we're just waiting for the results. 

The consultant only had the ultrasound results back but he seemed pretty convinced. We kind of assumed he wouldn't be convinced that it was cancerous or tell us that, if he wasn't sure - but - it has been at the back of mind that he hasn't had the biopsy results back yet so how could he be sure. I wish I'd asked that.

Her grandmother and great grand mother had thyroid lumps removed which were non malignant, so you never know.

We're getting our heads round his diagnosis now and so we'll see what the results tell us and take it a step at a time.

Thanks Lass. 

Not a problem at all. You know where we are now, so any questions or worries then please do reach out. There are no silly questions, just sometimes some silly answers from me. Lol

There's almost certainly someone here who has been there, done that - or at least heard of it. Between us all there's a lot of knowledge, so we should have you covered.

Take care, and go do something nice today and forget all about thyroids. I hear afternoon teas are a great mother and daughter experience!

Lass

Xx

Hi again,

Unfortunately the biopsy results were positive for thyroid cancer. We have an MRI and CT scan today which we get the results of tomorrow. Thyroid out next week and radioiodine 2 weeks after.

I just want to get the scan results back to rule out anything else and then we can concentrate on getting the thyroid sorted out.

The waiting between scans and results and all that is hard. Trying to stop googling and imagining outcomes is harder. Our daughter has been amazing. 

Just thought I'd give an update. 

Hey there Stocky, 

Sorry to hear that the FNA indicates cancer. I take it that it was a T5 result based on the plan you seem to have in place?

Do you know what type of thyroid cancer it is? 

Just to check, is it def the whole thyroid they are removing? Do you know why? And RAI 2 weeks after the op is unusual, it's usually 2 or 3 months later. They are much more cautious about using RAI these days, so I'm surprised they're planning it in before getting the histology back after it's removed.

Glad your daughter is doing well and coping with everything though. Just remember to look after yourself as well, you're important too. 

Lass

Xx

Hi Lass,

Papillary cancer and yes the whole thyroid and the RAI is planned 4 weeks after the operation now and yes after they have the full results back on the thyroid. So we have a plan and fingers crossed it will all work according to it. 

Thanks for responding. I hope you're doing ok Lass?

Stocky.