Hi, hope you're doing well.

I've just read through the thread and thought I would add my experience.

I'm a 21-year-old male and have just been diagnosed with papillary thyroid cancer.

I noticed a lump on the right side of my neck around the start of June and made an appointment with my GP. The GP said it was probably nothing but said he would refer me to an ENT specialist at the local hospital as it wouldn't let him book an ultrasound because of the COVID situation. After seeing the ENT doctor he again didn't find anything concerning but sent me for an ultrasound and FNA to rule out cancer.

1 week later I had my ultrasound and the doctor said the lump I went for was nothing of concern and was just the natural structure of my neck. But during the ultrasound, he said he found some very small nodes and one 11mm in size on the left side of my thyroid which looked highly suspicious.

On the 29th June, I had my results with a consultant who informed me that the results of the biopsy came back as inconclusive and to find out for sure what the nodule was I would have to have a left thyroid lobectomy. I was given the date 23rd July for my surgery however it was delayed by a week due to an emergency the consultant had with another patient on the morning of my surgery. I had the surgery on the 30th July and must say it went so much better than I anticipated. I had neck stiffness and slight pain but it was totally manageable. My voice was hoarse for around 2 days but now seems almost exactly what it was before.

I had the results for the side of the thyroid they took out on the 11th August and was told I had lots of little nodes which were all little cancers and I would need to have further surgery in September to remove the rest of my thyroid pending a meeting with the MDT next week.

If you have any questions about the surgery or anything you'd like to ask me feel free!!

Hi Paul,

I am very sorry to hear about your diagnosis.

It was very quick of them to deal with you, which is a big plus.

I had the op on 13th of July and still waiting on results. Your case gives me more hope, that it is all ok, or I would have heard from them by now. Though I understand they all work differently and I cannot find logic where there may be none.

Wishing you all the best for the future and complete recovery

Maryna:)

Good evening, 

Thanks all for sharing your experiences. Please can you offer me some help as I'm being well and truly fobbed off at the moment. I found a lump in Feb, March I had ultrasound and biopsy and was given Thy3f result. Then covid hit and originally they said surgery might take a little longer. I tried to be understanding and agreed to wait for the letter - they said usually it takes a couple of months. I've chased and they offered me a repeat ultrasound in May (no change) but otherwise said to wait for a surgery date due to covid. 
 

Ive since requested my hospital notes and found that my surgery has been put through as routine. All routine surgeries are apparently on hold due to Covid. 
so I contacted PALS and they've said as it's been categorised as routine then it must be benign or it would have been put through as urgent. Surely they can't change the biopsy result or assume it's benign without further tests and/or informing me? The earliest they can organise for me to speak to a consultant is 4th September apparently. 
 

It's really bothering me how this has been dealt with and I just want this sorted now. 
 

S x
 

Hi,

Yes, I've been very lucky with the speed at which everything is happening. I had my results only 12 days after my operation which was good as its less time for my mind to think up all the worst-case scenarios.

I would have thought if it was anything serious they would have got you to attend a follow-up appointment sooner than now as they did in my case. Hopefully, that's a good sign though its hard to tell especially when different trusts do things differently. I had a feeling my results weren't good when I got a phone call for my follow up appointment as they phoned me 3 times as well as sending a letter to remind me it was face to face and not a telephone appointment. 

Wishing you the best for your results!

Paul :)

Hi S,

I'm sorry to hear you've had a terrible experience too. I've done a lot of research while I've been waiting and although I'm not a medical expert, I know that this shouldn't be a routine surgery. They do categorise us as low or high risk (sex, age, size of nodule, number of nodules). This put me in the low risk group but I was still sent through as an urgent referral because we are suspected cancer patients. You need to make sure you are treated as one 

That's a long wait to speak with someone. I spoke with my GP and they offered to call or write on my behalf. It isn't right that we have to do this but taking things into our own hands and pushing seems to be necessary. I know for sure that they can't tell you it's benign and thy3f means there is a suspicion of malignancy (although usually a small suspicion) so you should be on the suspected cancer list (I'm sorry, that sounds scary but I've been assured it isn't as bad as it sounds)

Just to put your mind at ease a little, my surgeon told me that if he had to choose any cancer in the world, it would be thyroid cancer. With a thy3f, they know it isn't the more aggressive types as they present in a different way and would have shown on the FNA / ultrasound. If malignant, we would be looking at follicular thyroid cancer which spreads very, very slowly and sometimes doesn't spread at all. Thyroid cancer is often considered the 'good cancer' because, as long as it is localised in the neck, we wouldn't need chemo and other horrible things associated with cancer. The survival rate is so, so good. I was told my 2cm nodule would be considered very, very early if it is cancer and that I would be fine. That made me feel better. 
 

Do you have copies of your results? I would definitely request them. They can be emailed to you. They'll tell you the size of your nodule and what they found on your FNA. You can request everything - I even have letters doctors have written to each other. It's good to know exactly where you stand and why. I know the waiting is horrible, espcecially with the c-word hanging over you but if you had a repeat ultrasound and there was no change, it means the nodule isn't growing rapidly which I believe is a really good sign. 

Feel free to message any time and good luck x

Hi S,

I'm sorry to hear you've had a terrible experience too. I've done a lot of research while I've been waiting and although I'm not a medical expert, I know that this shouldn't be a routine surgery. They do categorise us as low or high risk (sex, age, size of nodule, number of nodules). This put me in the low risk group but I was still sent through as an urgent referral because we are suspected cancer patients. You need to make sure you are treated as one 

That's a long wait to speak with someone. I spoke with my GP and they offered to call or write on my behalf. It isn't right that we have to do this but taking things into our own hands and pushing seems to be necessary. I know for sure that they can't tell you it's benign and thy3f means there is a suspicion of malignancy (although usually a small suspicion) so you should be on the suspected cancer list (I'm sorry, that sounds scary but I've been assured it isn't as bad as it sounds)

Just to put your mind at ease a little, my surgeon told me that if he had to choose any cancer in the world, it would be thyroid cancer. With a thy3f, they know it isn't the more aggressive types as they present in a different way and would have shown on the FNA / ultrasound. If malignant, we would be looking at follicular thyroid cancer which spreads very, very slowly and sometimes doesn't spread at all. Thyroid cancer is often considered the 'good cancer' because, as long as it is localised in the neck, we wouldn't need chemo and other horrible things associated with cancer. The survival rate is so, so good. I was told my 2cm nodule would be considered very, very early if it is cancer and that I would be fine. That made me feel better. 
 

Do you have copies of your results? I would definitely request them. They can be emailed to you. They'll tell you the size of your nodule and what they found on your FNA. You can request everything - I even have letters doctors have written to each other. It's good to know exactly where you stand and why. I know the waiting is horrible, espcecially with the c-word hanging over you but if you had a repeat ultrasound and there was no change, it means the nodule isn't growing rapidly which I believe is a really good sign. 

Feel free to message any time and good luck x