# Surgery scheduled based on veracyte results



## bmcm2girls (Aug 30, 2013)

I have been dealing with thyroid issues for several years now. A nodule was found after an u/s for supraclavicular swelling and feeling like something was in my throat. Long story short, first fna was inconclusive and I was told to follow up in 6 months. I don't remember specifics but was told it was a follicular neoplasm and I do remember seeing hurtle cells present in the report. Nodule was just at 1 cm. 
I moved and had a follow up a year later. Nodule had increased in size and second nodule was found. So I was referred to an endocrine surgeon. He looked at the wrong side of my thyroid and proclaimed he was not impressed. I pointed out he was looking at the wrong side so he glanced at other side and said he was still not worried. He said he didn't think it was a nodule (??) and it just looked "lumpy and bumpy" like a hashi's thyroid. I am negative for antibodies. He then referred me to an endocrinologist. 
Endo did another fna that was non diagnostic. Then another four months later that was also sent for veracyte. Fna came back inconclusive again. Veracyte came back suspicious. Has anyone had this test done? If so, what was the outcome?
Off to surgeon I went. He basically did a watered down risks of surgery and have vague answers to questions (it depends being the answer of choice lol). I do know they will only be removing half unless prelim path, done while I am still asleep, comes back cancerous. He said some people stay overnight. Some do same day. What did you all do? I am hoping to not stay as surgery is on a Friday and my daughter has an event that weekend. I plan on being at it. Is that doable?
As for going back to work he said people with less physically demanding jobs can go in a week. I have an extremely physically demanding job. Is two weeks good? My shifts are 12 plus hours with a lot of lifting/twisting/etc. 
If it does happen to come back cancer (and I've had this nagging feeling it is this entire time. Maybe me being a worrier or intuition, we shall see) then how long would I be out of work? He wouldn't commit to an answer on that lol. 
Any thoughts are appreciated!


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## joplin1975 (Jul 21, 2011)

I can't comment on veracyte...I'm not familiar.

They are doing some outpatient PTs and TTs now. The big concern is calcium levels -- parathyroids can be disturbed and if you calcium drops, it can be dangerous. That's the primary reason for the overnight stays. I got back to my room around 8:30 that night and was discharged at 9:00am the following morning.

I found the surgery itself to be relatively easy, but that the hormonal upheaval to be somewhat difficult. The night after surgery, I was unable to sleep, was jittery, anxious, and had hot flashes. The following days I felt fine, strictly from a physical sense/pain wise, but I was pretty tired. It all really just depends on how your body reacts to thing.

I do not have a physically demanding job and was told to take two weeks off. I think that was in part due to the fact that I was not started on any replacement meds post-op. Anyway, Surgery was on a Monday and I was taking business calls and responding to emails by Wednesday. Eleven days post op, I helped my husband re-roof the house. Again, the pain wasn't an issue...I was just tired.

After reading everyone's experiences, I think the ultimate answer is it depends. Have you had surgery before? Anesthesia really doesn't seem to effect me much, but for some people, they feel off for a couple of weeks afterwards. Do you have a sense of medication plans post-op?


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## Andros (Aug 26, 2009)

bmcm2girls said:


> I have been dealing with thyroid issues for several years now. A nodule was found after an u/s for supraclavicular swelling and feeling like something was in my throat. Long story short, first fna was inconclusive and I was told to follow up in 6 months. I don't remember specifics but was told it was a follicular neoplasm and I do remember seeing hurtle cells present in the report. Nodule was just at 1 cm.
> I moved and had a follow up a year later. Nodule had increased in size and second nodule was found. So I was referred to an endocrine surgeon. He looked at the wrong side of my thyroid and proclaimed he was not impressed. I pointed out he was looking at the wrong side so he glanced at other side and said he was still not worried. He said he didn't think it was a nodule (??) and it just looked "lumpy and bumpy" like a hashi's thyroid. I am negative for antibodies. He then referred me to an endocrinologist.
> Endo did another fna that was non diagnostic. Then another four months later that was also sent for veracyte. Fna came back inconclusive again. Veracyte came back suspicious. Has anyone had this test done? If so, what was the outcome?
> Off to surgeon I went. He basically did a watered down risks of surgery and have vague answers to questions (it depends being the answer of choice lol). I do know they will only be removing half unless prelim path, done while I am still asleep, comes back cancerous. He said some people stay overnight. Some do same day. What did you all do? I am hoping to not stay as surgery is on a Friday and my daughter has an event that weekend. I plan on being at it. Is that doable?
> ...




When FNA comes back inconclusive it is probably better to go ahead and have the thyroid removed. Most people are very glad they made that decision because once pathology gets ahold of the gland, they sometimes do find cancer.

So; you do need to do what you think is best for you. That is the bottom line and we will support you in that decision whatever it is.


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## bmcm2girls (Aug 30, 2013)

Thanks for the reply! I have had surgery before but it was much more invasive. I did fine pain wise (only took pain meds the day of and then only at night for a few days. I hate feeling out of it and would rather have pain then feel that way lol). But I did feel awful from anesthesia for a little while after. I am mostly worried about how tired I will feel working those long hours... And I work nights to add to that. 
I already take 75 mcg of synthroid and I think that will stay the same if it remains a pt. But I think I am one of those people who is very sensitive to only minor variations in my tsh. Prior to starting any synthroid, I had gained 50 lbs in 6 months and felt drunk half the time. My brain so did not work lol. At that time they said my levels were "normal" and weren't treating me. My tsh was just under 5. So not terrible. They eventually started 50mcg of synthroid and I only felt moderately better. Weight gain stopped and I had some energy. My level was just at 3. The endo surgeon bumped me to 75 to see if it slowed the nodule growth and I have felt better on that than I have in a long time. My level is just over 1. But I can always guess what my level will be based on how I'm feeling lol. I am worried that when they take half, my tsh will go up some. Not enough to warrant treatment but enough that I will feel it. And they won't want to increase my dose.


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## joplin1975 (Jul 21, 2011)

Gotcha.

I personally think the surgery was a piece of cake, but the whole process of getting meds adjusted was tough, tough, tough. It took me eight months (but my doctor made some mistakes in the beginning)...if you move forward with the surgery, I guess I'd advise that you go into it knowing there will be lots of ups and downs...that the immediate "aftermath" is pretty minimal, but that you are going to have to deal with lots of craziness after. It's worth it, in the long run, but it is tough.


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## bmcm2girls (Aug 30, 2013)

Andros, thank you as well! I probably would have had it removed after the first inconclusive result, but I was moving out of state so I didn't. The endo sent the veracyte bc (I guess) it is supposed to help avoid unnecessary surgery for inconclusive results. They evaluate the RNA to help rule out cancer. I guess it is more accurate for its negative value (95 percent accurate if it says benign on a previously inconclusive result). But I am not sure how accurate it is for a positive result. I have read various numbers from 60-80 percent. I did the test in the hopes of avoiding surgery but that didn't happen lol.


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## bmcm2girls (Aug 30, 2013)

Joplin, I just looked at your numbers and I thinking holy moly! I wouldn't be able to get out of bed if my tsh was that high! And here I am complaining about a tsh of 5!! But the aftermath worries me more than the surgery itself.


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## joplin1975 (Jul 21, 2011)

Yeah, it was a little rough for a while there. 

Look, there's certainly no one who can give your any guarantees about the surgery or the post-op medication process. It sounds like you have a good pain tolerance, so I'm assuming you'll be ok in that regard. Your next step is to ask hard questions about what meds you will be placed on after surgery, how that decision will be made and how often you will get blood work (if they don't say every 6-8 weeks until stablized, run  ).


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