Thyroid cancer?

[Chocolatebuttonanyone]

I have a nodule on my thyroid. Just been seen under a 2 week wait and there is a 20% chance its cancer.
Shit shit shit.
I know that means 80 percent that its not, but I probably need a hemithyroidectomy anyway.
I cant deal with this right now. I dont know what to do.

So I got my results and it was a NIFTP whoch is currently classified as a cancer but is under review as it is encapsulated.
This means it's now gone after a hemithyroidectomy and I need no further treatment, just 3 monthly surveillance.
The chances of a papillary or follicular cancer are higher in women in their 40's and they can be well treated. As a cancer, its a better one to have. Although it still doesnt feel too good when they tell you you had a cancer in the bit they removed.
@stresshead38 )lots of people have nodules apparently. Most are nothing, just a bump. Those that are cancer are highly likely to be papillary or follicular which are very treatable. I now know more than I ever wanted to on the subject but would be much calmer if they found a nodule in the remaining thyroid.

My sister had thyroid cancer at 30 started whilst pregnant no2 drs fobbed her off and her voice changed she had a massive lump in her neck had baby ended up with sepsis then on discharge my mum said to drs are you going to investigate this neck lump took months to get to biopsy. She had a full thyroidectomy and lymph nodes removed then radioactive iodine. All with a 2 year old and small baby, was awful and scary. She also gets 3 monthly checks (12 years cancer free now) there are a lot of thyroid issues in our family both grandmothers and I have congenital hypothyroidism.

I'm glad it's been such a positive outcome, 3 monthly surveillance sounds very sensible and reassuring.

I think I've read every single item on the internet about thyroid nodules and thyroid cancer in the last 2 days. I'm a need to know person too, with an equally head in the sand husband.

I'm not actually sure how I am going to get through the week or two before my scan and having ready EVERYTHING I'm pretty sure I'll then be in for another 2 week wait to be referred to ENT. It doesn't seem very likely that they can rule out cancer just with the US scan

@stresshead38 Very similar situation here. I could probably be an endocrinology consultant with all the research I've done recently 😂

I have a 4 x 3 x 3cm nodule on the left side of my thyroid with macro and micro calcifications, as well as irregular margins, U4 classification. We've christened this one Noddy, and I've been referred directly to endocrine surgery to have that one removed. No biopsy / needle aspiration. Multiple smaller nodules on the right side, but these have been classified as U2 and considered benign. Whether that changes after the results from Noddy come through remains to be seen.

I didn't know I had nay nodules until I had the ultrasound last week, I was only referred as I'd had hugely elevated parathyroid hormone levels and everything else had slowly been ruled out. It was first picked up just after I had my son, who's now 19 months old.

I know that statistically, the odds of Noddy being malignant should be less than 5%, but my best friend has had thyroid cancer for a few years and I feel like I am prepared for the worst news now - she commented to me yesterday that I know more about it now than she does!

Seeing the surgeon (the same surgeon who did my friend's surgeries) on Tuesday. I feel certain that due to the size and position of Noddy, that I'll be losing at least half of my thyroid with it.

Much love to all who are worried, it's a shit position to be in, no matter how "good" a cancer this is supposed to be.

I was diagnosed with papillary thyroid carcinoma involving right lateral neck... that's the official diagnosis... last year incidentally as already had bowel cancer and underwent a PET.

Then had to have emergency surgery on my neck (11 hours) before having a small break and having major bowel surgery. Due to issues with that my radio-iodine treatment was delayed.

Have just found out it hasn't worked and bloods have shot Back up again. Oncologist thinks just spread again in neck so aspiration is next week. Had Ct and chest x Ray yesterday to check it hasn't spread.

It's a nightmare and I hoped it would be over by now. Worse is that I live in Kent and I have seven hospital appointments/scans over three weeks so financially and work wise it's a pain as they are in London.

Anyway you have my best wishes. Just wanted to empathise and moan :) am mid forties.

Very sorry to hear this, @Stomacharmeleon . How are you doing?

Will be thinking of you on Tuesday. Do let me know how you get on. I think having a connection close to home makes it worse as you have a direct link to someone on the wrong side of the statistics.

In a weird way I think I'd almost rather they just took mine out now. Being able to see the lump is freaking me out so much. And looking back at photos I think it's probably been there over a year.... how had I not noticed?!

@Stomacharmeleon that sounds exhausting for you. I have some experience as I am just outside Kent and have been travelling to London for my dads appointments.

I can't think about anything else, just willing the ultrasound appointment to come through quickly because the waiting is not doing my mental health any good.

@stresshead38 Yep, totally feel you on that - I just want it gone. There was a lot of watching and waiting with my friend and she now has mets in her lungs and sternum. Again, that's even rarer than having thyroid cancer in the first place, but I know what you mean about experience of the wrong side of the stats.

I don't know how I missed my lump, either. It's so obvious now. I see it every time I look in the mirror and I feel it every time I swallow. Denial, maybe? Who knows. I really hope your scan appointment comes through soon. Mine was quick under the 2 week pathway, and my letter arrived by email on a weekend. I hope your local trust is organised and on it. Il

@Stomacharmeleon I'm so sorry that you're dealing with a double whammy and yeah, the additional stress and expense of multiple appointments like that would be driving me mad, too. Is your employer sympathetic re: time off for appointments? Cancer is recognised as a disability so it may be worth reminding them of that if they're not!

I was diagnosed with papillary thyroid cancer when I was 29, getting on for 10 years ago now. The fine needle aspiration was inconclusive but the lump in my thyroid was so large and growing that it had to be removed anyway and when it was biopsied the cancer was confirmed. Had radioactive iodine and now take levothyroxine every day with yearly monitoring at the gp. My scar has healed really well and is barely noticeable. Have been lucky that my levels have been fairly stable since being on the thyroxine and have only needed minor tweaks.

I am so thankful for the NHS every day when I take my tablets who treated me as I am here and living a wonderful life thanks to them.

Thanks for all the messages. I am ok just wasn't anticipating more surgery and oncologist said they would be keen to go down that road if possible/ results of aspiration.
I was fairly lucky in it I was due to have something done for my bowel after PET and whilst I was there they asked if I minded them looking at my neck. I had no visible lumps or outward signs- a minor issue with swallowing but they blamed that on my bowel.
They did the aspiration there and then but even then the nurse said it was so unlikely it was cancer. More and more people kept coming into the room and then straight after they said it me it was highly likely I had cancer. Two weeks later I had an operation! Am just relieved they didn't have to break my sternum as mine was quite far down... they warned me they might.

Honestly though the operation and aftercare has been brilliant. I was a bit shell shocked afterwards and I had palsy of my vocal chords and had to have speech therapy but I am now fairly Back to normal although rather gravely in voice :)

If I have to do it again I will. Just not over the moon about it. And praying it's not elsewhere.

Thank you @NoddyTheNodule
They are usually pretty quick at my local hospital, so hopefully it's soon. It's weird the things you worry about though isn't it. We've had 3 truly terrible christmasses the last 3 years and this year is meant to be the best one ever to make up for it and I keep thinking now I'm going to ruin it all as it's only 6 weeks away!

@Jecstar that's a very reassuring story. I actually don't even care about a scar. Just want to be around for my girls.

The only slight issue I had was after surgery I had to take alfacalcidol as it took a while for my parathyroids to start working properly again and I really hated the taste the solution you have to drink for that it was yuck!

And also be kind to yourself emotionally. I recovered well physically so I went back to work after my two week sick note for the surgery but no one really discussed with me the emotional impact of the diagnosis and treatment. Once I had a chat with a MacMillan nurse about how I was feeling i ended up doing a phased return to work just to help with the emotional well-being side really more than the physically. Work were great with it and were really accommodating until I felt more emotionally back on track to be back full time.

I had exactly the same problem... had a vitamin crash and had to take calcium.
And it is hard emotionally. My scar is very thin and hardly noticeable but I cried very day for a fortnight when I was discharged and I have surgery regularly.

Be kind to yourself x

For those who had to have their thyroid removed (cancer confirmed or not), how quickly did it have to happen? Was it a 'we need to do this immediately' kind of situation or was there time to take a few weeks

@stresshead38 mine was about a month after.

@Stomacharmeleon oh ok. So it wasn't a big huge rush to get it done asap then. I might not even need mine out... haven't even had a scan or blood test yet, but I like to know what to expect

@stresshead38 I was told that it is relatively slow growing and usually localised so it's not a big rush. I admit it's not very comforting though!

Mine was removed at the start of December having first been referred at the end of August. All sorts of tests and scans in between. And I had the all clear almost 12 years ago now.

@Stomacharmeleon It's kind of comforting... but then my brain says 'but someone has to be the unlucky one who's is fast growing'

@June2008 I'm just trying to calculate whether I would be able to leave doing anything until after Xmas (if anything even needs doing that is).
I haven't even had a scan yet, and then I will need a referral to ent I assume (unless they're ever 100% sure it's benign based on the scan).

I went to the gp with a lump in my neck mid October and then had the operation to remove at the beginner of Dec. Had at least two appointments with ENT and a fine needle biopsy in those six weeks.

My tumour had grown by two cms in the intervening period so mine was growing quickly and the surgery was longer than expected because of this but as I said in my previous post I’ve been well since having it removed.

@NoddyTheNodule thinking of you today. What time is your appointment?

Thanks @stresshead38 - it was at 12pm, and a bit of a non-event. The surgeon couldn't understand why I'd been referred on by endocrinology without a needle biopsy being done, and he isn't willing to remove the nodule without either a biopsy result showing cancer, or 2 x inconclusive biopsies. This is because half of my thyroid would need to go with it. So, back to more waiting for a FNA appointment now

Any news on your scan appointment?

Oh how frustrating! Why can't we just have a one stop shop where you go for your scan and then biopsy if needed.
I'm sorry it's more waiting for you.

No, I've not had an appointment through yet for my scan. Im betting it comes through for Monday next week... only because that's the one day I can't really do!

I am having a needle biopsy Thursday..