downgraded thyroid nodule at fna appointment

[UndiagnosedR]

I have a u3 nodule (1.9x1.8) and have at least 4 more (solid over 1cm) that was classified as U2 on US although had. Vascularity and hyperexhoic. The U3 nodule is a cyst but, thickening and had calcifications was referred for 2WW us and fna, however the radiologist doing the scan downgraded to a U2 and said fna not required. Rather concerned of his dismissal of requirement for fna and also manner in which he spoke regarding his opinion mattered more than the guidelines. Has anyone else had other experiences with this? I am seeking a 2nd opinion private as the nodules are making swallowing difficult and was told by radiologist will scan again in 6months and even if cancerous common thyroid cancers grow slow. Which even if so I don’t want to sit and worry for 6 months not being able to swallow and eat properly

[PurpleNails Administrator]

I heard of this sort of thing before.  Changing the plan and differing opinions are not helpful.

Nor is the comment that thyroid cancers are slow growing.  Many believe thyroid cancers are over diagnosed but that doesn’t mean once something is detected it shouldn’t be investigated. 

Your previous post shows low TSH so this may be a sign one of the nodules is over functioning.  This makes malignancy extremely unlikely so this doctor may have altered their decision with this in mind. 

I’ve had similar experience when referred from ENT with swollen salivary gland.  

Doctor doing scan just said just looks a little inflamed didn’t think FNA necessary & tends to be a difficult area.

Is the doctor completing scan a radiologist or ENT specialist.  If they are not from ENT you may want to push for ENT consult specifically on the swallowing issue.  I saw ENT specialist & said thyroid nodule was pressing a little but “wasn’t too squashed” in there.  It was already established the nodule was benign but hyper functioning,  They said they would operate & remove lobe with nodule then Endocrinology recommended radioactive iodine RAI - so ENT discharged me.  

I haven’t had either surgery or RAI & have stayed on carbimazole.  

[UndiagnosedR in reply to PurpleNails]

was radiologist not ENT and had no mention of any referral to endo, the radiologist only saw scans so had no idea of TSH levels anyway.

Yer his bed side manner was shocking and definitely not a helpful statement as especially since I have had rad exposure too which is why I wanted it checking.

Said I would be contacted by ENt in 6 weeks but had gotten bigger in the last fortnight. So definitely want a 2nd opinion.

[Hidden in reply to UndiagnosedR]

Exactly the same happened to me today! U2 and a U3 nodules identified in initial ultrasound. Consultant referred me for FNA last week but told me they could downgrade it. Went for the biopsy today to be told they were downgrading the U3 nodule to U2. The doctor used exactly the same wording as the ENT consultant. Seems like a policy to me. They couldn’t get me out of the room quickly enough - the doctor told the nurse to open the door for me as I was getting off the examination table! No chance to ask questions or ask if there would be any follow up/monitoring in future.

[UndiagnosedR in reply to Hidden]

it is so frustrating isn’t it, what’s the point in having policies in place for fna if they can downgrade, and then decide not to it. Especially when they don’t explicitly explain what’s going on obvs something isn’t right as the nodules are not normal to warrant the referral in the first place. Are they waiting until it gets graded to a U5 then do something as it’s so ‘treatable’? I get theNJS is stretched and that chances if nodules being cancerous are low but that’s not a chance I want to take and I’m sure most people wouldn’t want to take the chance. I called ENT after mine and asked what happens next and the receptionist said I should have a phone call/ appointment in 6 weeks and that was it. So it may be worth calling them although you will probably get told the same thing. Are your nodules causing you any problems?

[ACIC]

Hi, my experience sounds a little similar. I have 2 nodules. Initially told by the GP a few months ago that one is benign and one uncertain. Also mentioned it was 2cm. I was sent for an ultrasound and they discovered Hashimoto’s. Then scheduled a biopsy, got there and two doctors looks did the scan again and told me they were both benign and I didn’t need the FNA, but gave me no explanation and sent me home. Thought that was it, but then revived a letter saying I did need a biopsy. Again, the radiologist did the biopsy this time and said one looks benign but the other uncertain and potentially has blood vessels in. I’m waiting for my results, it’s been 3 working days and very stressed. Hope yours turned out okay.