Hi Emmalou,

I've had a lobectomy for papillary thyroid cancer two and a half weeks ago. I'm back at work, no problems.

It really isn't anything to be concerned about and in fact for small, contained papillary carcinomas they are actually thinking of stopping calling it 'cancer'. My nodule was 1.8cm.

What I'm saying is that even if cancerous, in the majority of cases, thyroid cancer is easily treated and almost always curable.

If you do have only the one nodule and below 4cm in size the current guidelines are that only that lobe of the thyroid is removed, not the full gland. From research the majority of ongoing issues relate to the full removal of the gland when uneccessary leaving the patient dependent upon hormone replacement for life. If your surgeon ever did recommend full removal please raiswe this point.

I had Hodgkins lymphoma 11 years ago and this was a breeze compared to that! :-) (Hopefully).

All the best.

Hello,

I wonder how you are getting on a year and a half after your lobectomy? 
I'm asking because my 24 year old son has been told the small nodule on his right thyroid is papillary cancer and he will need to have part or all of his thyroid removed. We are awaiting results of his second biopsy. we haven't had the results yet.
As a mother I'm extremely worried and anxious about my son being diagnosed with cancer and the prospect of an operation in the midst of a coronavirus pandemic.

Your post was extremely reassuring and positive. I would love to hear how you are getting on now. 

Best wishes 

Hello everyone. Having never been on a public forum before I hope I am doing this correctly.

I went to the doctors October last year because by chance my mum noticed a lump protruding from my neck. The GP confirmed she could see something was there that shouldn't be so referred me to the thyroid clinic at the hospital after taking a blood test.
The thyroid specialist there examined me and confirmed she could also see a protruding lump but because my blood tests from the GP came back normal indicating thyroid is working at 100%, it suggested it might be something else. So she scheduled me to have an ultrasound scan.

Only one week later they got me in for the ultrasound and quickly confirmed that I have a fluid-filled cyst with a 4cm diameter. During the same scan they also discovered a small nodule on the other side of my thyroid. 
The next step was to drain the cyst and take a needle biopsy of the nodule-which happened two weeks later. 
The cyst aspiration was a success but they ended up having to do two biopsy's in one sitting as first one came up inconclusive.
I had to wait 5 weeks for the results to come back only to be told that the second biopsy was also inconclusive. 
They recommended I wait a couple of months to give the nodule time to heal before doing my third and final biopsy.

I arrive again for my third and final biopsy with ultrasound and they've noticed my cyst over the 3 months had filled again so said they would drain it one last time for me but if it fills again, they'd have to look into getting it removed which would require taking away part of my thyroid aswell. The third biopsy was also completed.
Last week I received a call from the thyroid specialist who had the results-coronavirus lockdown had just started the day before! Again, the third biopsy had also come back inconclusive and she also said that cysts tend to be benign but if they refill persistently (like mine did) it could be cancerous.

She recommends I have a full thyroidectomy so she can do tests on the nodule on one side and the 4cm lump on the other side to definitely determine whether they are malignant or not.

I was shocked over the phone at the decision of extreme measures of removing a whole part of me over indefinite results but my mind went blank and I wanted to be the perfect non-annoying patient so just went with what she advised. But soon after putting the phone down I realised I had so many other questions I wanted to ask. I knew I'd have the time though as she said not to expect a date for operation for a good while as they were only taking on emergency operations at this time. 
5 days later (yesterday) I receive a call from the hospital saying they've got me a date for the 6th April! Only 5 days from now! I'm not ready at all. Luckily I got her on the phone later the same day, asked whether there were any other options, for example:

montoring it every year via ultra sound/biopsy
She said there was nothing else they could do except do the operation. Because I was hesitant, I told her to give the appointment slot away to someone else and that I wouldn't go ahead with it. 
Was I silly in being reluctant to have a full thyroidectomy when they don't even have a definite answer??? All they said is there's a small chance it is malignant. That's not much to go on, not enough for me to undergo this operation and be on medication for the rest of my life anyway! And i'm worried at how I'll feel if I decided to have the operation, only to be told that both the cyst and the nodule were harmless anyway. I'd be broken-hearted I think.
I'm in such a difficult position. If anyone has been where I am right now or anyone has any positive/helpful advice to give I would really appreciate this right now.
I never stay awake past midnight but it's playing on my mind.

Sorry for the longest post on the forum but I really need some help....

Did anyone go elsewhere for a second opinion? Would privately be an option to get better answers? Does anyone on here have annual ultrasounds/biopsy's to keep their eye on their abnormalities???

Many thanks

Danielle 

I think you did the right thing. 

Inconclusive means they did not detect cancer cells in the sample and if they did not detect cancer cells in three separate samples then that must be reassuring.

My son's first needle aspiration was taken from three angles and cancer cells were detected in the biopsy. He then had another needle aspiration at the specialist hospital. Sample was taken from one angle only and the result came inconclusive as cancer cells were not detected in this sample. But because cancer cells were observed/detected previously, he will need to have an operation to remove all or part of his thyroid. We will find out next week if they recommend removing part or all the thyroid but like you my son is not happy to have all of his thyroid removed and we are going to insist they only remove the right side with the nodule.

Having said that, I have a friend whose daughter was born without a thyroid and she takes one pill a day and lives a normal life. Another friend's mother had all of her thyroid removed many years ago and also led a full life after.

Be strong and stand by your decision. 

My son's op has been booked for June. I hope and pray that proper testing for Coronavirus are in place by then...

Hi. I'm new to this so please bear with me. 

I'm a 34 year old woman and about 10 days ago i discovered a lump on my neck and immediately went in to panic mode. I called my doctor the next morning and she asked me to send her a picture of the lump as they are limiting face to face appointments atm due to covid 19. I sent the photo and she called me straight back to say that it looks like the lump is on my thyroid gland and how long has it been there. I honestly have no idea although it is so obvious now i feel like an idiot for not noticing it sooner.

I went in for a blood test the next day and my bloods came back normal apart from slightly high platelets which my doctor doesn't think is related to my neck lump, but have to go back in 4 weeks for re test. Now, by this point i had barely eaten anything for a week and i'd been having constant anxiety attacks. I've convinced myself i have thyroid cancer based on other peoples stories and i am not coping well at all. I've had blocked throat, swollen lymph nodes, blocked ears and diarrhoea which could just be reactions to extreme anxiety but i'm worried they're related to cancer now.

My doctor could sense how worried i was so tried to hurry my ultra sound along and i've managed to get an appointment next Thursday. My main worry is that i'm going to have to wait for ultra sound results then have a biopsy, wait for those results all while Covid 19 is happening. I dont think i'm going to cope. 

I've read your stories which are inspiring but im absolutely petrified that i have anaplastic thyroid cancer and they won't be able to help me. My family think i'm way over the top and can't understand why i'm so upset and worried. Did anyone else have a massive breakdown through out this process? I'm at my wits end already as i am 100% certain that this is cancer due to everything i've read about it. Doesnt help that i'm going through a divorce as well. Just feel so alone. Cant eat anything or be happy about anything. Just think about cancer all the time. 

Dear Katstar85,

I'm so sorry that you are going through all of this on your own. It is not easy and in many ways not knowing what you're dealing with makes it more scary.
 

In answer to your question yes I very nearly had a break down when I was told my 25 year old son has thyroid cancer. I have also just had a melt down outside UCHL this morning whilst waiting for him to have his pre op assessment done. I wasn't allowed to go in with him and was very anxious about a host of things such as the danger of him picking up coronavirus and the fact that he will be undergoing general anaesthetic to have part of his thyroid removed next week, to mention a few. Most of all I'm upset that he should be going through all of this at such a young age.

My advice to you is to get your investigations done ASAP so you can find out what exactly you are dealing with. Thyroid cancer spreads very slowly which is one piece of good news. 

My son's cancer was diagnosed before the pandemic and only now has he been offered a date for his operation. So in many ways your timing is good as they are just starting to look after non- covid patients.

Please do not hesitate to reach out again if you feel low. You are definitely not alone...

Dear Anna62,

Thank you so much for taking the time to reply to my message, especially when you are going through such a tough time yourself. It's just as hard for loved ones to go through this as it is the patient. I'm so very sorry your son is going through this especially during this awful time but he is in the best hands now and I wish him all the best for his recovery. 

You are so right that waiting for answers is the hardest part of all this and as it is slow growing, the urgency maybe isn't there but I am going to push as hard as I can to get my appointments and results ASAP. I'll even go private if I have to.

Sending you lots of positivity for your sons operation. Please update me on how he gets on. I'll be thinking of him.

Hi Katstar,

You're not alone. The waiting by far is the worst part. I Googled symptoms and convinced myself I had symptoms  related to all types of thyroid cancer. It's the worst thing you can do and yet I know we all do it!

Have you had any symptoms? The ultrasound can show estimated size and characteristics of the nodule. They will probably have a fair idea from the ultrasound if the characteristics favour benign or malignant, although can't say for definite without biopsy results. Once you have an appointment and feel like you're getting answers it will help your feelings of anxious ness. Keep pushing to get appointments for your own peace of mind. 

Thank you so much Katstar85.

My son's operation is next Tuesday and he can come home on Wednesday. I will keep you updated.

Thanks again and take care.

Hi Hoof1,

Thank you for taking the time to reply to my message.

I have a lump in my at the front of my neck, slightly to the right (looks like a goiter) which moves up and down when I swallow. Since I found the lump I've noticed what I think are swollen lymph nodes under my chin and blocked ears (that click when I swallow). The last two symptoms could be due to extreme anxiety but it's hard to tell. I've also got a painful chest and the lymph nodes under my arms feel a bit sore. Could be from heavy breathing due to anxiety. My throat was extremely blocked at one point but that was definitely due to stress as that has since subsided. I'm such a state at the moment. I keep thinking I have thyroid cancer that has spread to the lymph nodes and in to my lungs. My brain just will not stop! My ultra sound is next Thursday so will just have to wait and see but I suspect I will need a biopsy done. It's just all the waiting for appointments and the constant dark thoughts that are killing me. I was absolutely fine before I found the lump. No symptoms at all. The fact that a doctor hasn't even examined me has not helped.

Did you have any symptoms?

Hi [@Katstar85]‍ ! 
 

our symptoms sound almost identical! I hope your scan goes well! X 

I had a lump that moved too when I swallowed. No symptoms really. I did notice that when I swallowed it felt that my throat wasn't fully cleared. My mother told me I looked pale and thin in the face. So I got my bloods taken and they were normal. My gp noticed the lump by chance and felt my neck. She thought it felt solid so sent me for an ultrasound, which then led to a biopsy. Asked if I had palpitations, weight change, disturbed sleep, change in period, change in bowel movements, hoarseness, trouble swallowing or pain in neck area.

I had a lump that moved too when I swallowed. No symptoms really. I did notice that when I swallowed it felt that my throat wasn't fully cleared. My mother told me I looked pale and thin in the face. So I got my bloods taken and they were normal. My gp noticed the lump by chance and felt my neck. She thought it felt solid so sent me for an ultrasound, which then led to a biopsy. Asked if I had palpitations, weight change, disturbed sleep, change in period, change in bowel movements, hoarseness, trouble swallowing or pain in neck area.

Sometimes i feel like my throat is a bit blocked (like phlem is stuck down there) but other than that, i think the blocked ear may be due to stress as i didnt have that before i found the lump. Only once i started panicking but without a doctor examining me, i have no idea. I guess the only way i'll know is by having the ultra sound but my experience so far sounds a lot like yours.