The THYROID Thread

[Christine]

Originally Posted by robynslp

So I'm starting to freak out about my partial thyroidectomy based on "inconclusive" results. I don't exactly live in a medical meca. Are there other tests that could be done?

I guess the best news I've gotten recently is that my deductible that I thought was calendar year is actually, july to july so I met it already.

I didn't think you could get an "inconclusive" on a partial thyroidectomy. A surgery/removal such as that would be given a full pathology.

[robynslp]

I'm sorry, I wasn't clear with what I meant. I'm not liking the idea of having a partial thyroidectomy based on inconclusive FNP. I think what I really need to do is see my regular dr to understand better what is going on. I was basically told its a 15-30% chance it is cancer.

I really really don't like the idea of surgery.

[Christine]

Originally Posted by robynslp

I'm sorry, I wasn't clear with what I meant. I'm not liking the idea of having a partial thyroidectomy based on inconclusive FNP. I think what I really need to do is see my regular dr to understand better what is going on. I was basically told its a 15-30% chance it is cancer.

I really really don't like the idea of surgery.

Yeah, the surgery ain't no picnic!!! I would probably have several needle biopsies before I decided on surgery. And those "inconclusive" biopsies would need to be leaning rather to the "weird" side for me to do it. OR, I would definitely have the surgery if my thyroid gland was misbehaving. It's actually easier to treat thyroid issues once you get rid of the gland.

[SingingMom]

Originally Posted by Christine

Yeah, the surgery ain't no picnic!!! I would probably have several needle biopsies before I decided on surgery. And those "inconclusive" biopsies would need to be leaning rather to the "weird" side for me to do it. OR, I would definitely have the surgery if my thyroid gland was misbehaving. It's actually easier to treat thyroid issues once you get rid of the gland.

I actually thought the surgery was a little better than the biopsy. Lol. I was sleeping for the surgery. For the biopsy, I was wide awake with the surgeon and nurse 2 cm from my face. I have this thing about PERSONAL SPACE!

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[branv]

Originally Posted by robynslp

I'm sorry, I wasn't clear with what I meant. I'm not liking the idea of having a partial thyroidectomy based on inconclusive FNP. I think what I really need to do is see my regular dr to understand better what is going on. I was basically told its a 15-30% chance it is cancer.

I really really don't like the idea of surgery.

I know I'm super super new to this, but this is just like my situation. In cases like mine, almost always when they got an inconclusive FNB they automatically went to surgery for diagnostic purposes. But what I'd read about, and luckily my doctor/lab already knew about, was a relatively new test called the Veracyte Afirma gene expression test. It takes inconclusive/suspicious tests and runs molecular/gene testing on them which is far more accurate than an FNA. Johns Hopkins stated that use of this test could end up reducing unnecessary thyroidectomies by 74%.

The test is very expensive, like $3500, but apparently many insurances are coming around to covering and I think I read that they may be able to work with you to get it for much less than that if your insurance will not cover it. But I'm not entirely clear about that. The cost sure beats the many many thousand dollars a thyroidectomy would cost. If your doctor hasn't heard of it, and dismisses it, consider calling around to other doctors or calling Veracyte directly to get a recommendation for one familiar with the test.

If your labs weren't prepped for it when they were taken at your last FNA, the bad news is that you will need another FNA as it requires special handling. But at least you know you have options.

Here's more info: http://thyroid.about.com/od/cancergo...-nodules_3.htm

Best of luck to you.

[Christine]

Originally Posted by SingingMom

I actually thought the surgery was a little better than the biopsy. Lol. I was sleeping for the surgery. For the biopsy, I was wide awake with the surgeon and nurse 2 cm from my face. I have this thing about PERSONAL SPACE!

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I was mainly thinking about the recovery from the surgery. It wasn't the worst thing in the world but it wasn't like having a mole removed either!

[SingingMom]

Originally Posted by Christine

I was mainly thinking about the recovery from the surgery. It wasn't the worst thing in the world but it wasn't like having a mole removed either!

Oh I know. I was making a feeble attempt at humor. ;-)

I had a total thyroidectomy for papillary carcinoma with spreading to a few lymph nodes, after originally having Graves' disease, then contracting hepatitis from an allergic reaction to the PTU. And yet, the main thing I still really cringe at was the biopsy and everyone so up close in my face. I must be claustrophobic. When I had my daughter I had a panic attack as they were closing me up from the c-section because the drape was up to my face. I am a nervous patient when "aware" of my surroundings.

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[Christine]

Originally Posted by SingingMom

Oh I know. I was making a feeble attempt at humor. ;-)

I had a total thyroidectomy for papillary carcinoma with spreading to a few lymph nodes, after originally having Graves' disease, then contracting hepatitis from an allergic reaction to the PTU. And yet, the main thing I still really cringe at was the biopsy and everyone so up close in my face. I must be claustrophobic. When I had my daughter I had a panic attack as they were closing me up from the c-section because the drape was up to my face. I am a nervous patient when "aware" of my surroundings.

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Oh, yeah, I'd say you have a little problem!!!

I don't necessarily have that sort of issue but in some ways I do. It's why I hate the dentist so much. I hate that the dental hygenist is so close to me and I don't like all that prolonged attention to my mouth!!

I never did have a FNA in the neck so I don't know how I would have dealt with that. I've only had breast biopsies and, fortunately, they are not in your face for them.

[SingingMom]

Originally Posted by Christine

Oh, yeah, I'd say you have a little problem!!!

I don't necessarily have that sort of issue but in some ways I do. It's why I hate the dentist so much. I hate that the dental hygenist is so close to me and I don't like all that prolonged attention to my mouth!!

I never did have a FNA in the neck so I don't know how I would have dealt with that. I've only had breast biopsies and, fortunately, they are not in your face for them.

Yes, I am the same with the dentist. Luckily the one hygienist has me down on my chart as a nut. Lol
Been there, done that with the breast, too. I can deal with that ok. Just want it over with. But that "in your face" thing just makes me crazy!

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[branv]

I know this is completely O/T, but since you all have been so kind about my situation, I wanted to again thank you and tell you some good news. Not about the thyroid, too early yet, but about the pregnancy.

After I updated my OB with the info about my thyroid, they were able to get me in to have my first sonogram 9 days earlier than originally planned. I knew this was going to a nervewracking day for us b/c the last miscarriage was discovered at our first sonogram when they just couldn't find a heartbeat.

Well, we got a heartbeat! A REALLY strong heartbeat! Baby is measuring exactly on time, and he/she was even moving a little bit. Because of my position, I didn't see the flickering of the heart at first and my heart sunk. But DH saw it right away, and started crying before even I did! Which startled me because I didn't know why he was crying!

The only teeny-tiny weirdness is that the due date is 9/11. Oooph. I think I will be lying about that one when we tell people. We aren't going to tell anyone until after we have all the testing done, which will be right as we enter the 2nd trimester. So for now, it's me, DH, one friend, and all you peeps on the DIS!

I thought this would scare me -- the idea of being pregnant and potentially having cancer. But, at least for today, I feel stronger. Like I have hope and more fight in me than before.

Thank you again for everything.

[SingingMom]

Originally Posted by branv

I know this is completely O/T, but since you all have been so kind about my situation, I wanted to again thank you and tell you some good news. Not about the thyroid, too early yet, but about the pregnancy.

After I updated my OB with the info about my thyroid, they were able to get me in to have my first sonogram 9 days earlier than originally planned. I knew this was going to a nervewracking day for us b/c the last miscarriage was discovered at our first sonogram when they just couldn't find a heartbeat.

Well, we got a heartbeat! A REALLY strong heartbeat! Baby is measuring exactly on time, and he/she was even moving a little bit. Because of my position, I didn't see the flickering of the heart at first and my heart sunk. But DH saw it right away, and started crying before even I did! Which startled me because I didn't know why he was crying!

The only teeny-tiny weirdness is that the due date is 9/11. Oooph. I think I will be lying about that one when we tell people. We aren't going to tell anyone until after we have all the testing done, which will be right as we enter the 2nd trimester. So for now, it's me, DH, one friend, and all you peeps on the DIS!

I thought this would scare me -- the idea of being pregnant and potentially having cancer. But, at least for today, I feel stronger. Like I have hope and more fight in me than before.

Thank you again for everything.

Congrats and God bless,

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[Christine]

Originally Posted by branv

I know this is completely O/T, but since you all have been so kind about my situation, I wanted to again thank you and tell you some good news. Not about the thyroid, too early yet, but about the pregnancy.

After I updated my OB with the info about my thyroid, they were able to get me in to have my first sonogram 9 days earlier than originally planned. I knew this was going to a nervewracking day for us b/c the last miscarriage was discovered at our first sonogram when they just couldn't find a heartbeat.

Well, we got a heartbeat! A REALLY strong heartbeat! Baby is measuring exactly on time, and he/she was even moving a little bit. Because of my position, I didn't see the flickering of the heart at first and my heart sunk. But DH saw it right away, and started crying before even I did! Which startled me because I didn't know why he was crying!

The only teeny-tiny weirdness is that the due date is 9/11. Oooph. I think I will be lying about that one when we tell people. We aren't going to tell anyone until after we have all the testing done, which will be right as we enter the 2nd trimester. So for now, it's me, DH, one friend, and all you peeps on the DIS!

I thought this would scare me -- the idea of being pregnant and potentially having cancer. But, at least for today, I feel stronger. Like I have hope and more fight in me than before.

Thank you again for everything.

That's great news and I'm so happy for you!!!! Enjoy this and don't even think about the thyroid stuff. Statistically, the odds are in your favor.

[luvmarypoppins]

branv - congrats and just focus on that baby. Dont worry about the what ifs right now.

And my thoghts on the fna conversation
I can understand about all the fnas and in your face kind of stuff. Honestly none of that really bothered me. My surgeon is really tiny and short so it was rarely that he was in my face, more like he had to put on stilts to find me, well not really, lol.

The worst was the core biopsy I had. That was beyond nerve racking and scary. I think dh said he wanted to throw up. Its like a caulk gun getting put into your neck sideways, not straight on. I was told not to look, turn, move etc. And worse, he said, I am making another pass on you (attempt) because I didnt like how the first one went, oh gheesh thanks!

Well my endo does her own fna they say, but honestly I would rather go to the ent surgeon if I need another one. I think he just has so much more experience etc.

[luvmarypoppins]

Well this deserves its own post so gather round ladies because you all welcome to a piece of because we are having a party today!!

Today is my 4 year cancerversary!! God is so good. Cant believe 4 years ago I almost was not blessed to be here anymore and wonderful dh holding my hand in the coma (too bad he is in california and seattle all this week). I am blessed beyond measure for sure!

And yest I went to the endo. Ds21 took me. Good nursing school experience for him. Endo said my numbers are great. Hmm, she gave me the blood report and they only listed one test and the others are pending. its less than .2 measurable so a 0. She still wants me to get the reclast infusion and the sono, She gave me the name of another internist to check out. I go again in august since she always go to greece in july. Even ds told me what a nice dr. she was!

Thanks for always listening to me and being encouraging.

Mickayla - tomm you go to the new repro endo? Wishing you all the best.

[branv]

Congratulations! And here's to many many many years of good health to come.