Diagnosis still not conclusive…

Hi Laline. I’m not from this group. I usually hang out in the head and neck cancer one. You say pathology should be back in two weeks? So how does your consultant know the nodules are benign? I’m a bit confused. In HNC mets are found sometimes and no primary. It may be that the body’s immune system has dealt with it or it’s so small the biopsy doesn’t find it. I think you just have to get back to your consultant to get a proper explanation. Hope you get an answer. Best wishes. 

Hi Dani,

the consultant said there’s a chance it could come back benign - the results aren’t back yet. I think she’s taken a look at the thyroid when she removed it and maybe thought it didn’t look too menacing? 

Thanks. I misread your post. Yes your consultant said the the nodules could come back benign… sorry. 
Well if the metastasis is thyroid and all thyroid tissue has been removed maybe the question you should be asking is can they cure the mets? Would radioiodine do it? 
Like I said earlier sometimes the primary can’t be found. 

Thanks so much for coming back - yes I’ll be asking that. Apparently there’s a spinal team that have also discussed me being treated in Birmingham- not sure if that’s surgery or radiation. 

Good luck. I’m sure they will be on top of it. Let us know how you get on xx

Hi Laline
There's always a chance that pathology will come back benign but the doctor should have been pretty close to sure it was cancer before taking out the whole thing. Normally if there's any doubt, they'll just take half in the first operation.

Or, possibly, if you had lumps on both sides or a particularly enlarged thyroid that was interfering with your breathing, they might take it all in one go because it was obstructing your windpipe. 

Ah thanks so much Barbara - lumps were all on left side of the thyroid but to be fair since there is the secondary in my spine with three tinies in my left lung there was probably reason enough to take it out first time as you say. 

I will update soon as I hear anything.

Caroline 

If they think these others are secondaries and believe that the primary is in your thyroid, then I can't for the life of me understand why they'd be throwing around words like 'benign'.

The good news is that if you do have metastatic cancer, it's much more treatable as metastatic thyroid cancer than most other types of cancer.

I realise that's not sounding like much of a 'good news' statement but thyroid secondaries benefit from still behaving like thyroid cells and so are susceptible to zapping with radioactive iodine.

Don’t know how I missed this Barbara but I loved your response…it’s a bit confusing but you’re so right it’s hopefully very manageable ️️

I am back with an update. It was confirmed follicular papillary carcinoma in my thyroid, 14mm. Next steps Radioactive Iodine and see how well my back takes it up. 

I feel relieved to finally name it. Have a path forward and hopeful I'll be able to manage it well.

Thank you for all your encouragement.