The Test That Thyroid Nodule Patients Need To Know About

[greygoose]

nahypothyroidism.org/the-te...

[beaton]

Good news for those who are worrying about this.x

[greygoose in reply to beaton]

That's what I thought.

[Clutter]

GG, I don't think it is available in the UK yet.

healthunlocked.com/thyroidu...

[greygoose in reply to Clutter]

No, probably not, but if enough people ask for it, perhaps they'll do something about it.

[Clutter in reply to greygoose]

GG, Thyrogen to raise TSH without coming off T4 for 4 weeks doesn't seem to be available in the UK either

[greygoose in reply to Clutter]

As bad as France, then! Terrible, isn't it!

[BlueMundo]

My 17 year old daughter is having a hemithyroidectomy next month. My daughter had a FNA and the results were reviewed by at least 3 pathologists before recommending that she should have surgery. Thyroid function (at least according to her blood tests) has not been affected by the nodule she has on her thyroid.

We have seen a surgeon and also an Endo, for a second opinion, who also reviewed the results of the FNA. The Endo said the sample from the FNA was good and showed some cellular change but that the results were indeterminate as to whether benign or cancer. The FNA result was 3 on a scale of 1-5, with 1 being benign and 3 they don't know.

My daughter's age and the fact that she has a 2cm nodule plus FNA result has led both Surgeon and Endo to the conclusion that she needs surgery. The Endo said he could arrange another FNA for my daughter but his opinion was the proposed surgery would still be the outcome.

I keep reading that surgery shouldn't be taken lightly and should be avoided if not cancer. As the parent of a child with a nodule it is very hard to know what to do. I have been told by 2 different doctors at two different hospitals that this is the right course for my daughter but as I have hashimotos I know how awful under active hypo can be.

Is this test available in the UK and should I be pushing for her to have it or should I just accept that she is too young for a nodule and it's best to have the surgery?

Any advice would be appreciated. Thank you.

BM

[Clutter in reply to BlueMundo]

BM, I was under the impression that your daughter's doctors were recommending hemilobectomy primarily because they felt the nodule would continue to increase in size rather than concerns about malignancy. The removed nodule will be biopsied post op and the larger sample means malignancy can be categorically confirmed or ruled out.

The Veracyte Affirma test isn't yet available in the UK as far as I'm aware. If it was I don't think it would be beneficial if surgery is recommended due to the size of the nodule.

[BlueMundo in reply to Clutter]

Hi Clutter, when I previously asked questions about my daughter's proposed surgery I think I had only knew what the Surgeon originally told us: that the as results were indeterminate and due to my daughter being so young to have a nodule, that would only get bigger, he recommended surgery.

I saw the Endo originally for my Hashi but he asked about my children. He then saw my daughter under the 2 week cancer referral system. He reviewed all the results and explained about the FNA grading system. Prior to this Endo consultation we hadn't had any knowledge about the FNA scale or cellular change.

I am now under the impression that there are three reasons for the proposed surgery: young age to have nodule, it will continue to grow and indeterminate result/cellular change.

My daughter was referred under the two week cancer referral for expediency rather than they believe it is cancer. No one has said they think it's cancer at this stage but have added the caveat that "if it is cancer it is the best one to have."

[Clutter in reply to BlueMundo]

BM, That's why I don't think Veracyte Affirma would be advantageous if it was available. If the nodule is benign surgery is still being recommended because of the size and the likelihood it will grow bigger.

It was the size of my nodule and the fact it was compressing my trachea which determined hemilobectomy not thy3.

[BlueMundo in reply to Clutter]

Thanks for your comments Clutter. We are resigned to the surgery but at the same time I feel such a responsibility to make sure it's the right course.

I hope you are well today.

BM

[Clutter in reply to BlueMundo]

BM, If the nodule isn't currently causing your daughter discomfort it will when it grows. Removing my nodule sorted my breathing and swallowing difficulties. Dental treatment is now a breeze compared to how difficult it was when I choked through it.

[BlueMundo in reply to Clutter]

Thank you Clutter. That's a positive angle and I've only felt scared and negative to this point.

[Rebec in reply to BlueMundo]

I personally wouldn't go ahead but this is not an easy decision. But if she's going to have it done then make sure that her surgeon has a lot of experience.

Whatever you decide, I would like to wish your daughter good luck.

[Salsa2014]

If the nodule is benign there is lazer treatment available in Italy to reduce the size of the nodule w/o surgery. I found out about the Affirma test and lazer surgery after my partial thyroidectomy and not one endo thought to mention these options to me, even though my surgeon knew they were available. If I could start over I would have had the Affirma test and if benign have the nodule lazered. It is my view that they are too quick to whip an essential gland out to cover them against what is a rare risk of cancer. I think they are covering themselves mainly in case they miss cancer rather than thinking about the long term impact on the patient. The uk is sorely lacking when it comes to thyroid treatment options. If I was in your shoes I would want my daughter to have the test in the USA before having surgery. They treat people with half a thyroid appalling and will only give thyroxine when results are out if range regardless of what they were before surgery. Good luck with your decision.