Papillary Thyroid cancer diagnosis

Hi,

I'm in near the exact same situation! I have follicular cancer, but it and papillary are treated bascially the exact same. I had a hemi (in October) where they discovered the nodule was cancerous, and then given the same options you have been given.

My initial thought was just to get the rest of the thyroid removed, because then that would be it done and dusted, and not have to worry about it again (apart from needing the thyroxine). I talked to some friends about it and they were suggesting that I go in the opposite direction and just get regular checks done. My thinking though is that I had 2 ultrasounds, a biopsy, an operation, and it was only after the operation that they knew the nodule was cancerous, so if I get scans done on the other thyroid side in the future, that might not be able to tell if there's more cancer there or not, or if there's anything suspicious ever, they'll just suggest a full thyroidectomy then.

I'm also a anxious person, and I think I would be worrying between scans, wondering if anything has changed, or worrying if the time between scans has been longer than normal. Once I asked a few more questions about thyroxine and life after a full thyroidectomy, I decided to go for it. With covid I have no date for an operation yet (was meant to be this month but has been pushed back).

I'm only 23 and don't have kids, so I didn't have to worry about telling kids, but did decide not to tell my grandparents and some aunties/uncles who are going through cancer themselves but are having a worse time than me of it, I didn't want to worry them when I feel fine and don't need any major treatment other than surgery. But I told my closest friends to make sure I had people I could talk to about it when I needed to, make sure you have that too! But if you tell your kids, it's worth remembering that thyroid cancer has much better outcomes than other types of cancer, and there's no need for them to worry.

Hope this helps!

Hi

I had a similar choice to you . Was told that if the lump had been smaller than 4cm they would not operate and if it had been larger I would have the remainder of my thyroid removed. Of course my lump was 4cm! I met with the oncologist and she recommended that if I was the sort of the person that would always be wondering if cancer had spread elsewhere between checks I should get the thyroidectomy and RAI. That was the choice I made . I am still to get on a settled dose of levothyroxine but can say that having taken the decision I did I dont worry about cancer returning.I can also say that I could easily have decided to take a watch and wait decision. I was happy to tell everyone about my diagnosis as it gave me the licence to be a little grumpy at times. I wish you well as you consider the steps to take as it is not easy. As a footnote when you do speak to people about thyroid cancer you uncover many stories of people who have gone through the same decision many years ago and are living fulfilled happy lives,  The passage of time means that the radioactive dose used now is a fraction of what it was 10 years ago.If you have yet to discover the Butterfly Thyroid trust it has a wide range of useful resources..

Hi

I was in the same situation as yourself.

Lump appeared suddenly in June 19. Graded 4 at biopsy and was told 70% chance of cancer. Got given option of hemi or total removal. Had hemi in Nov 19 and was diagnosed with papillary, no spread. 

My lump was 2.4cm and I was given the choice of further surgery or monitoring (I got the impression from my surgeon that they don't routinely remove the rest of the thyroid after a cancer diagnosis any more).

I chose not to have the completion surgery. I didn't have the greatest experience at the hospital and really couldn't face going through it all again. 

I had a 6 month scan last summer which was all clear but haven't heard anything yet about a follow up. 

I think in hindsight the only thing I wish I had asked was if the cancer did return say in a few years time would the operation be more risky/complicated than if I'd had it done close to the first one.

I do agree though, it is very difficult when you have to make a decision like this and even more so with the pandemic. 

Wishing you all the best 

Hello,

Thank you for your reply.

Just wondering if in hindsight you had maybe wished you had gone down the removal route now that you are left waiting for your next check up appointment?

I will bare in mind to maybe ask the nurse about the risk of having the operation further down the line.

I hope you get your check up through soon.

Take Care

Hi

No problem. 

Apologies, I wasn't very clear and made it sound like I just got a scan and was then abandoned!

I've had a follow up telephone appointment with Endocrinology and I've also seen my surgeon who examined my neck. I have further appointments coming up in the spring as well so you will carry on being checked every few months even if you decide not to have further surgery. My surgeon said they use the first scan as a baseline so perhaps they leave a longer gap until the follow up one. 

I'm on TSH suppression to stop the cancer coming back so take a small dose of thyroxine every day and have blood tests to monitor the levels. 

No I don't wish I'd had the remainder removed. It's weird - when you're going through the tests, operation etc it's all you think about. (I spent so much time googling thyroid cancer!) but you do slowly move on and it stops being so all consuming  

Hi,

Just thought I would give you all a little update on where i'm at following all your kind responses. I have really struggled to make a decision on which route to go down, so much so I have started suffering with what I hope is just a bad flare up of IBS, but unfortunately I have been referred for a colonoscopy to get it all checked and I am hoping it's just down to the stress I have been under. 

I had contacted one of the local specialist nurses and explained what was going on and she was absolutely brilliant, she could see how stressed I was and we both agreed on a plan going forward, she has booked me in for an ultrasound scan for next month and a follow up call following that just so it gives me time to get this other issue sorted. She said if I make a decision before this time all I needed to do is call her and she would start to put things in place. She reassured me that I can change my mind at any time and that I don't need to think that if I say no now to the full removal I can't change my mind further down the line if I decide that is the best option.

I can't tell you what a huge relief having that conversation was, and hopefully I will be sorted soon to decide the best option for me going forward.

Thanks again for all your stories, it really helped!

Hi

That's great news (apart from the IBS). So glad you have some support and will be getting a scan. 

When I first went to the hospital with my lump they automatically did a coeliac screen in my blood tests even though I had no symptoms. Apparently coeliac disease is often linked to thyroid conditions.

My results came back positive so might be worth getting checked for it if you haven't been already. 

Oh really that's good to know! I am booked in for my colonoscopy on Sunday so will speak to them about it. 

Thank you