Papillary Thyroid Cancer recurrence

FormerMember over 5 years ago

2 replies
26 subscribers
2498 views

Hi all,

I recently found out I have a lymph node in my neck which contains thyroid cancer. I had a group of nodes removed from my neck 2 years ago and have been 'clear' since (following full thyroidectomy in 2012). The surgeon I saw last time has since retired and I saw the new surgeon yesterday. My Endochrinologist saw me two weeks ago to discuss, and although he gave the impression he felt surgery was likely, he said this was ultimately the surgeon's decision.

The node is small (less than 1cm) and my last Thyroglobulin test in Apr/May was less than zero (just detectable). The lymph node involved was diagnosed through a routine ultrasound and needle biopsy (confirming PTC). The surgeon's plan is to test Thyroglobulin again to check for any increase (this should be back within the week), to discuss in MDT and, depending on the outcome of these two things, monitor me with a further ultrasound in 3 months.

I explored his plan during the consultation and he was happy to answer my questions. I don't question his knowledge or experience at all, it has just left me feeling very confused and anxious. I am not in any way keen to have more surgery, and I know TC is slow growing and risk is very low. Everyone else I talk to seems to think I should be relieved, but I am not.

Has anyone else been in this situation? I know no-one can tell me what will happen, I just need to talk to people who get how I'm feeling.

Thanks.

Lass over 5 years ago

Heya Pam,

I've not been in your situation as such, but I am living with thyroid cancer that hasn't been gotten rid of. Mine is just in my bones instead of my lymph nodes.

I understand the anxiety you must be feeling, and I've an idea of the thoughts running through your head just now. Something along the lines of not wanting unnecessary surgery, but also not really wanting to leave cancer in your body without doing anything about it. And what if this isn't slow growing, and has a bit of a spürt, or allows other cells to drift off through the lymphatic system to seed other nodes. And so on and so forth.

So, yes surgery is one option to get rid of it, but RAI can be too. Have you had a dose yet?

The thing to remember too is that the doctors only really advise and recommend. So if you feel really strongly that there's a specific way you want to proceed - and it's not the way the doctors recommend - you can ask them to do as you'd prefer and discuss the pros and cons of that. You don't always have to go with what the doctors say.

Lass

I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

FormerMember over 5 years ago in reply to Lass

Hi Lass,

Thanks for your response and understanding. I am sorry to hear your thyroid cancer has spread to your bones. I have had RAI before (after thyroidectomy and prior to lymph node removal in 2017). Also had small dose RAI prior to whole body scans. Previously, RAI didn't work in targetting my lymph nodes and that hasn't been discussed as an option at this stage (though has been discussed in relation to further treatment post-surgery if Thyroglobulin remains high).

My surgeon has reassured me that the risk of waiting another 3 months is low, but I think I had already convinced myself that surgery would happen and got myself focussed on that. I think if the Thyroglobulin test this week comes back low again, I will probably feel more comfortable with the wait.

I suppose I am something of a control freak who dislikes not knowing what to expect, if you know what I mean. I will wait and see what the blood test shows and then request another meeting with the surgeon once I have considered the options.

Thanks again.

More from this forum

Papillary Thyroid Cancer recurrence