Hello all,
I hope it is OK to post here since I haven’t been diagnosed.
So back in October I noticed that in the front of my neck where my thyroid is that the left side felt enlarged and different. At that time, it wasn’t so much of a clearly defined mass, but I knew something definitely wasn’t the same. I saw a nurse practitioner who said she couldn’t feel anything concerning and to see the doctor in a few weeks if I was still concerned. A few weeks later I did so and the doctor basically told me he wasn’t concerned and, if I’m being honest, was a bit dismissive.
It probably sounds silly, but because he seemed dismissive, I was very reluctant to go back, even when the area became a clearly defined hardened lump and somewhat visible. I also was extremely busy with work and personal life so I put it off as nothing. But by a couple of weeks ago, the mass had become quite large and there was no doubt at all something significant was there at this point. So I went to see another GP who has said it is on my thyroid, there is also another lump in my neck and referred me urgently for an ultrasound scan, which is on Monday. She did thyroid tests and said if they came back normal, which they did aside from a slight T4 elevation which wasn’t considered abnormal as such, I would also need an emergency referral to an endocrinologist as they need to know why there is a mass with normal function. She didn’t say the exact words but basically seemed to be trying to prepare me for the possibility that it could be thyroid cancer.
I have been feeling very fatigued and had issues with my throat getting sore and hoarse (I am a teacher so this has been noticeable to me as talking is a big part of my job). I can swallow food and drink but am aware of pressure on my throat which sometimes makes this difficult. I have also had a cough for many weeks which I assumed was just an annoying leftover from a bout of Covid I had recently but now I am questioning this. The lump still seems to be getting larger gradually. It’s hard to say how large but I would estimate around 3-4cm across.
Of course, all this could be coincidence and/or have other causes and I am hoping that is the case. But I am also worried this could be exactly what it seems like and could possibly be worse because of my own stupidity in leaving it so long to avoid feeling awkward or like I was bothering people.
I am not entirely sure what I am looking for but felt I had to reach out somewhere. I suppose hearing whether this sounds similar to others’ experiences and what I might expect at the ultrasound and beyond might be helpful.
Thank you if you read this far and I hope it is alright that I posted.
Thank you for posting this. I can understand why you are worried, and also why you delayed returning to the doctor.
When you have the ultrasound do take someone with you. When I had my first ultrasound in mid December 2021 I also had a fine needle biopsy, not what I had expected. This wasn’t painful but just uncomfortable- apart from anything else I hate needles so I was pretty scared and was pleased my husband was with me. It was pretty clear that the person doing the scan knew what she was looking at.
In my case it was papillary thyroid cancer.
I had a thyroidectomy and neck dissection (to remove lymph nodes) in mid February, 2 months after the ultrasound. Then radioactive iodine treatment in May (painless but boring! ) - should have been in April but I had Covid.
I was completely terrified about the surgery but it went well and I was well supported by the hospital. I have a specialist nurse who is very good at responding to emails and my Macmillan worker, who I met at the same time as the surgeon, has been helpful when I’ve made contact. I was off work for 5 months - I too use my voice a lot for work and I needed to be back to normal before returning.
My hospital has an online platform you can sign up to. It means you can see results etc quickly and if there is one where you are I would suggest signing up as soon as you can.
My cancer is a very rare aggressive variant and I’ve had to have a second lot of radioactive iodine recently, but from the scan results I’ve seen online it looks as if I’m clear of it for now - I speak to the oncologist next week and am hoping I’m right!
My feeling is that knowledge is power, so I’ve read a lot and feel I understand my situation well. As you’re a teacher maybe you will feel the same.
I hope this is helpful. please let us know how it goes. You will find a lot of support here.
Hello, I hope you’re doing ok! I am currently going through a similar situation as yourself, but have just reached diagnosis. my ultrasound and biopsy happened very close together then had a short wait (2 weeks) for an appointment with the consultant. I had this appt last Monday when I was told my lump is cancerous and further tests needed prior to surgery. I’m also a primary school teacher - you’re not alone!
move done lots of reading to prepare myself for things to come. The one thing I haven’t been able to prepare for is continuing to work until surgery. Finding it hard to balance the workload ans my well-being at the moment.
I hope you have some answers soon.
Hi, I’m also having an ultrasound tomorrow.
i have already got a non-cancerous thyroid nodule which is also around 4cm.
i have found another though so going through the whole process again to see what the new one is and whether it’s anything to worry about.
I hope yours goes okay.
Hi
In my experience, I would recommend asking for a biopsy when you have your next ultrasound. I am also a teacher, I had been hoarse for a while and had noticeable lump on my neck. GP referred me immediately to hospital who scanned it and said all was fine but they’d see me in a year. The following year, the lump was doubled in size, it was massive but they still said it was fine! At this point I asked for a biopsy because I wasn’t convinced that something growing so rapidly in my neck was ok and I’m so pleased I did. They actually misplaced my results so I had to chase them but the biopsy showed abnormal cells which turned out to be cancer. I dread to think where I’d be if I hadn’t asked for the biopsy - would I still be blissfully unaware - who knows? I hope I’ve not frightened you but your story reminded me so much of my own. Hope everything goes well.
I wouldn't blame yourself for leaving it at all @Temflake the blame lies firmly on the first doctor dismissing you and I would probably have felt the same. My experience was of finding a lump, waiting for a while not wanting to bother doctors etc, but after a week or so booked a doctor's appointment and was sent under the 2 week pathway for further investigation. My voice had been hoarse especially at night for months previously (I couldn't clear my throat) but I put this down to my Asthma inhaler which I have been on for years but thought nothing of it. It wasn't unfortunately and I was quite shocked when diagnosed as I hadn't seen it coming at all even though I had been diagnosed with Hypothyroidism for a couple of years. After my initial appointment I had an Ultrasound scan and by that time I also had a lymph node which was enlarged so they suggested I have a Fine Needle Aspiration (FNA) there and then, which I did and although it sounded scary was not bad at all, not painful and couldn't feel anything afterwards. I then was sent for a CT scan with contrast dye, which I got myself into such a tizzy over which seems silly now because it was all fine. I was actually scared of the contrast dye more than the scan, I have had several scans over the years but with my asthma and allergies I was scared of a reaction to the dye, which I didn't have. Hope your experience is a good one too, and good that you are now being investigated and hope it is a good outcome for you x
Thanks so much to everyone who responded. I will reply to you individually shortly.
Just an update to this to say that I spoke to the doctor on Thursday and given the blood results and the fact that I am having some problems swallowing, she has done a 2 week referral to ENT (originally was going to be Endocrinology but apparently they don’t do 2 week rule at my hospital).
So now I have the scan tomorrow (Monday) and an ENT appointment on Wednesday. I guess the idea is that they will have the scan results before the ENT appointment and I will know more.
I am glad things are moving quickly so I can get answers and any treatment needed can be accessed promptly, but I’m also feeling quite overwhelmed too. I have a busy period coming up at work and also at my second job I do from home with a bunch of deadlines and it worries me that I won’t be able to get into the headspace I need to with everything happening when people are depending on me.
The doctor also said that because the mass is pressing on my throat, if I start wheezing or struggling with breathing at any point I need to go to A&E immediately as the most immediate concern with neck masses is that they will interfere with the windpipe. I know it’s unlikely and she had to warn me, but it kind of frightened me when she said that. Like I’ve got this thing in my neck that, even if benign, is growing and could cause a major problem.
Anyway, didn’t mean to ramble. Thought I would just provide an update out of courtesy since people took the time to respond.
Thank you for your response and for the advice.
I am a bit of a strange character in some ways in that if I’m having things done medically or similar I actually prefer to be on my own as I feel if I have a loved one present it becomes stressful to deal with my own feelings and also worry about how it might affect them. So I will be going to the scan alone as it is difficult for my partner to get the time off work anyway. I do appreciate the advice and the heads up about the possible biopsy though.
Sorry to hear about all you have been through. I hope that you are right and that the latest scan has good news for you.
Thank you for your response.
I am sorry to hear of your recent diagnosis. I really hope that things will go well for you with treatment and you can get back to being healthy.
I can completely relate with struggling to continue working with so much going on. I am experiencing this just with the worry, especially as teaching requires so much energy and enthusiasm. It’s difficult to continue to ‘perform’. I can only imagine that actually having been diagnosed and awaiting surgery magnifies this. I hope you can find a way to be OK while you wait.
Thank you for your response.
I hope that your ultrasound went well and that it turned out to be another benign node. It is reassuring for me to hear that it is possible to have a node this bug which turns out to be benign, as I wasn’t sure whether this was the case.
Thank you for your response.
I am so sorry you had that experience and glad that you were able to ask and find out in time to get treated.
I will definitely bear this in mind. Hopefully I won’t have to fight for answers the way you did!
You didn’t scare me, I appreciate the advice.
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