The THYROID Thread

Discussion in 'Coping and Compassion' started by Christine, Nov 11, 2006.

  1. MariDisney

    MariDisney Queen of the World

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    Thanks, Christine. That's exactly what I had...cancer cells outside of the main tumor. They were also 2-3 other tumors that measured less than 3 mm. Because of the fertility treatments and my age (40) at the time, the endo and my reproductive endo felt fine not doing RAI then, but I'm definitely going to have a conversation about it at my next appointment.
     
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  3. branv

    branv <font color=blue>The safety feature in my parents

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    Hi everyone, new here and looking for support and/or information. I posted this on the CB a bit ago, but stumbled across this thread during a search. I hope you don't mind my long post.

    Sitting here counting the days (okay, minutes) until my results from an FNA performed 7 days ago. I won't get the results until this Friday (so 10 days total) because my @#$@ ENT doctor said something vaguely about how she doesn't call with results b/c she likes to "look people in the eye" while she tells them their results. Frankly, I am certifiable at this point.

    My story. Again, this is really, really long, but I am a full-disclosure kind of person in hopes that it gives an accurate picture. Sorry for the novel:

    My mother had Graves disease 20 years ago: thyroid nuked, done well on meds since. My older sister has Hypo with Hashimotos: bad off, numbers in constant flux. Had nodules, with benign FNA years ago. Claims they swell now and again when meds off, but her doc hasn't given her an US since. In 2001, at 28, I was diagnosed with mild hypo and my endo found 2 small nodules. She biopsied them and they came out benign. My hypo, honestly, didn't give me much in the way of obvious symptoms. I just took my pills, and that was it.

    I moved to a new city the next year, and just found a GP in our new city (I'd HATED my endo). I told her about the nodules, etc, but we could never get my endo to send over my records. In 2006, my GP had me do a thyroid sonogram just to get some idea of what was there. I never really heard anything about that sonogram after that. During this time and since then, occasionally out of the blue I'll get those sudden heart pounding episodes for no reason. Numbers still looked good, no other symptoms, so ???.

    In 2008, I started trying to eat better and dropped 20 pounds. I was still quite overweight despite the loss, just fyi. Suddenly, after the loss, my numbers swung closer to hyper. My doctor tried dropping the med dosage, then had me stop taking it all together. Since then, my thyroid tests have been normal without the meds. We assumed it was due to the weight loss, but my subsequent regaining of the weight (sigh) didn't effect anything. My latest test showed:

    TSH: 2.9
    T4: 10 (not sure why I don't have T3 in my records)

    In December, (I'm now 39) I went in for a lump on my leg I thought was an ingrown hair. My doc thought it was basal cell carcinoma. This made her think about my thyroid nodules again, so she referred me to both a dermatologist and for an updated sonogram (again, last was 2006). The lump came out no cancer, thought some mildly atypical cells (yay...sort of), but the sonogram showed changes to my thyroid. I was referred me to an ENT for an FNA. At the ENT, I learned the following:

    Original nodule: grown from .8 cm to 1.6 cm
    New nodule: not present in 2006 sonogram, now 2.0 cm
    Second new nodule: size of lentil, considered inconsequential

    When I mentioned that my original Endo had told me I had two nodules in 2001, the ENT said that my scan in 2006 only showed the one. Huh?? I honestly have no idea what the size of those nodules were in 2001, sadly. She told me the good statistics, which I'd already known (or thought I knew) through reading. And given those stats, plus my last nodule being benign, I felt pretty confident. I mean, even if it's thyroid cancer, I learned it's "an easy fix" and CURED! My dad had survived lung cancer, so in comparison that sounded like a walk in the park.

    God, what a fool I am.

    So I went for the FNA, and for some reason the orders only stated to have one nodule biopsied. I spoke up and said they were concerned about two. The technician said the radiologist had only ordered one, but when he came in she told him what I said. Thank goodness! He had her do a quick scan, and said, "yeah, we definitely want to do both of those." There go my nerves. During the scan, this is what I heard the tech say to the radiologist: "the front one is really well defined, but that larger one [the newer one] looks really irregular" and "well, it's definitely got blood flow".

    I got home and started doing research on what was said. Immediately I saw that poorly defined borders and blood flow are good indications of malignancy. Still, I thought, "okay, you can deal with this. Everything you read said most thyroid cancer is very very curable and simple."

    Except, of course, now I know it's not. And this thing might have been in me for 5 years now.

    Now that I've looked past the dry medical websites into real studies and people's experiences, I'm so scared. I've read how common it is that even the most curable one, papillary, ends up being in the neck lymph nodes. And how debilitating the resulting neck dissection surgery can be. I read that up to 30% of papillary cancer reoccurs, and often years later. I also read that under age 45 (some reports say 40), your chances are great, but over 45 it drops a lot. I'm 40 in June. And that's just papillary, the supposed "good one" to get. Of course, there's all the pain of going hypo I've read. I've learned quickly that this is not the easy process doctors try to say it is.

    Also, I'm 7 weeks pregnant. In October I was diagnosed with a missed miscarriage at 8 weeks for what would have been my first child after over a year of TTC. I found out about the pregnancy right before I found about the nodules. I also found out at 4 weeks that my progesterone is low: they want 15-20 at that time, mine was 13.5. This is not good. Add in only mild pregnancy symptoms so far, and there just isn't much hope for this pregnancy. I go in for my first ultrasound a week after I see the ENT for my results.

    I'm just a mess. Add in hormones, and I'm a weeping mess. Do I have cancer, will the baby survive? If I have cancer, and the baby survives, I will have to put off RAI until after the birth and that means no breastfeeding, no holding my own child for too long. If I have cancer and the baby doesn't survive, the RAI pretty much takes my already low chance of conceiving (at my age) and destroys it.

    I know these are things I shouldn't be thinking about. I know I don't even have information yet. So what's the use in driving myself insane? But it just feels like bad news is on the way. There's just been so much of it lately. And ten days is a long, long time to keep the brain from taking over and overheating.

    Again, so sorry for the War & Peace length post. I just need to talk to real people. As wonderful as DH has been, I feel very alone in this "waiting it out" void.
     
  4. mrsklamc

    mrsklamc <font color=blue>I apologize in advance, but what

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    Ok, I haven't read your entire post yet but my first thought is 'get a new ENT." If they think making you wait 10 days is appropriate because of their own personality quirks, they obviously have no idea what it's like to be in the patient's shoes. Going back to read the rest...
     
  5. mrsklamc

    mrsklamc <font color=blue>I apologize in advance, but what

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    Ok you have a lot of info there and I can't respond line by line right now but a couple of things jump out at me: 1) The reason survival rates go down so much after 45 is that that is when people tend to get the more aggressive kind, and if you had that, you would probably be dead already, so don't worry.

    2)It seems many doctors are doing away with having people go hypo and using thyrogen, so don't stress about that until you get there.
     
  6. mrsklamc

    mrsklamc <font color=blue>I apologize in advance, but what

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    Oh, and mine was in my lymph nodes, and I had a radical neck dissection, and it wasn't too bad actually. Nothing compared to going hypo. The thing to do is just make sure you have an EXCELLENT ENT, one who does this a lot w/o damaging parathyroids.
     
  7. luvmarypoppins

    luvmarypoppins <font color=darkorchid>I am debating whether to pu

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    branv - :hug: you sure do have a lot on your plate right now. I am sure the waiting is too much right now.

    I wouldnt read too much stuff online, although I am guilty of that myself.

    Sometimes even if you have the fna it might be inconclusive too.

    But make sure you are comfortable with your endo and the surgeon you choose if need be.

    I would much rather have heard the news in person. Actually I heard from another doctor on the phone. Yup, she just called up and told me I had cancer. So I dont know if there is really any way that is good to hear results. Everyone reacts differently.

    I think 10 days is kind of too long too. I think 7 should be about it. Did they send it out or do something in house or closer etc.

    My lst fna was sent outside. It took forever and was inconclusive. The 2nd and 3rd ones they did in house since I went to a univ. teaching hosp. They used their own pathology lab.

    Hoping this turns out to be nothing for you and you can get on with your life.

    If its something, then you deal with it day by day. I didnt get dx till I was 50 and I am working on year 4 next week and I also have a rare and aggressive kind and had the neck dissection like Mikayla.

    Wishing you all the best. Blessings to you.

    Wishing you all the best.

    I used to live in TX too. (Dallas County). If its something I would really get a 2nd opinion at MD Anderson. They are the best. I didnt have my cancer till I moved here to NY though.
     
  8. branv

    branv <font color=blue>The safety feature in my parents

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    Thanks everyone for your help. Though I admit I tend to hate to "rock the boat" I was inspired by your comments that 10 days was too long. So I called the doctors office to ask if my results were in. Two hours later, they hadn't called back, so I did. The nurse came back on the line and said the results were inconclusive. She also said she thought she heard that the pathologist had asked permission to run an additional test on the samples. Also, she stated that the doctor wanted to see me Thursday instead of Friday since they'd had some openings come available.

    My head is reeling. I can't believe we're dealing with more waiting.

    I don't know what this means. I thought I read that inconclusive typically does come out cancerous. And I know this means either another FNA or a thyroidectomy to test tissue. What could "additional tests" mean?

    I knew this was a possibility, but I'm still surprised. I went to a hospital (Seton) to have a radiologist do a sonogram-guided FNA. They had a pathologist test the samples during my FNA to make sure they had gotten what they needed. The pathologist was with, I think, Clinical Pathology Labs.

    I had just assumed that the use of the pathology testing during the FNA would make it more likely to get a conclusive result.

    I just want this over with so I can make a plan one way or the other.
     
  9. mrsklamc

    mrsklamc <font color=blue>I apologize in advance, but what

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    DH's co-worker just had an inconclusive result while pregnant, had a partial thyroidectomy, and it wasn't cancerous.

    Plus you can't count on typically anything. I remember reading how it was so unlikely that I actually had thyroid cancer, yet here I sit.

    Just do your best not to worry.
     
  10. Christine

    Christine Would love to be able to sit on

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    I want to say that you will NEVER get a true "benign" reading off of a thyroid biopsy. You will either get malignant or inconclusive. There are times that they will "stage" the inconclusive with whether or not the pathologist deems it suspicious. If that is the case, they usually have you come back for more samples.

    Thyroid cancer is not like other cancers. Using breast cancer as an example: if you have a lump in your breast--they can do a couple of biopsies in the tumor or area and get a conclusive reading: benign or malignant.

    Thyroid cancer doesn't work that way. You could have a mass of 1 cm, for instance, and within that mass you can have tons of harmless cells but a few cancer cells. If the needle doesn't pick it up, you get inconclusive. I had my whole tumor removed. A decent sized "slice" was taken out of it and looked at. There were probably millions more cells in that slice than what ever gets pulled out on an FNA. My results were inconclusive. When my sample was sent off to pathology--which is a long process; takes about 5 days--that's where the cancer cells were seen.

    So you can see how difficult an FNA is with thyroid cancer. Some people get "lucky" if you can call it that and get a cancer cell in the FNA and then they just have the luck of knowing. Most people seem to get the inconclusive results and then spend months/years rechecking and watching.
     
  11. luvmarypoppins

    luvmarypoppins <font color=darkorchid>I am debating whether to pu

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    Well remember how I said I need to schedule my sono and blood work for my endo visit.

    Well I just pulled out my paperwork and I see my endo visit is on monday and I am freaking out.

    Oh yes so there is no way that I can get a sono in time. I hopefully can get the blood test tomm. Plus we are suppose to be having a lot of snow on friday and and then my dh is leaving for the west coast on mon.

    Well I guess I will just have to have the endo only look at the blood test which is better anyway and tell her sorry about the sono, its coming etc.

    I hope she isnt too mad at me since I hav never done this before.

    And since dh got me so upset at the endo last time I guess it will be better. I will take one of the ds with me. That is bad in itself since I will be driving and my eye is not that good to see when its dark out. I am gonna see if I can mae it earlier since I want to say good bye to my dh but I doubt that will happen.

    I think by the time I get to the dr. my bp will be sky high, hmm wonder why:)
     
  12. branv

    branv <font color=blue>The safety feature in my parents

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    Thank you all so much for taking the time to give me information and support. As odd as it sounds, hearing "inconclusive" was initially hard, but I found that my anxiety decreased a lot to at least hear something. Knowledge is definitely power. And apparently the unknown is a big bag of wackaloon crazy!

    I know I've always been an overly-imaginative person, but my goodness....my emotions have ranged drastically from "eh, you'll get through this" to "oh gawd, I can't BREATHE!!!!" Sometimes from minute to minute! We'll just pretend I can chalk this up to pregnancy hormones. In fact, if it weren't for this baby, I'd have had one seriously gigantic glass of red wine by now. It's probably the only reason DH hasn't secretly dissolved one of my (leftover from surgery) pain pills into my coffee just to chill me out. Sheesh, you'd think at 39 I'd have better coping mechanisms by now. ;) Would someone please tell me when all that supposed wisdom is supposed to kick in?
     
  13. Christine

    Christine Would love to be able to sit on

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    The wisdom doesn't kick in until you get closer to 50 AND your oldest child has passed the teen years. At that point, you truly feel like you have become "wise."

    I will say that when I was going through this 18 years ago, I was really freaked out. I feel for you because I think this stressful diagnosis (or non-diagnosis) is really compounded by the fact that you are pregnant, uncertain about the pregnancy, and are in the process of trying to conceive. Really, this is the LAST thing you need.

    If I were in your shoes, I would try to put this thyroid stuff OUT of your mind. Concentrate on your pregnancy and doing what you need to do to maintain it. Even if the thyroid cancer has been there awhile (if you even have it) you still have some time to play with. It's not like other cancers. Just take a breather and revisit this whole thing about 2-3 months after having a baby!
     
  14. branv

    branv <font color=blue>The safety feature in my parents

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    Well, I hate to ask for help again, but was hoping some of you might be able to give me your thoughts or at least guide me to a good source. Some of what I thought I knew wasn't entirely correct (the measurements, for one, were off), plus we've got some more "we'll see". The biggest surprise is that it turns out that my old nodule (the one that the endo said was benign in 2001) is the questionable one.

    Here was my pathology report:

    Right Thyroid Nodule: (the "new since 2006" one)
    1.8 x 2.0 x 1.5 cm
    The cytologic preparations are mildly cellular and show sheets and clusters of bland follicular cells, some microphages, lubricant and blood; only scant colloid is appreciated.

    Right Thyroid Nodule: (known since 2001)
    1.3 x 1.4 x 1.3 cm
    The cytologic preparations are moderately to abundantly cellular and show numerous sheets and clusters of Hurthle cells. Many of the clusters are crowded with nuclear enlargement and there is a subset of microfollicular arrangements. There is a background suggestive of chronic lymphocytic thyroiditis with numerous lymphocytes and lymphoid tangles seen. However, not much colloid is appreciated and the architectural arrangements raise the possibility of a neoplasm. Only very rare single Hurthle cells are seen.

    The minute my doctor said Hurthle cells, my heart dropped into my feet. I'd read the stats on that one, and it scared me badly. Though I do know Hurthle Cell carcinoma's higher mortality does coincide, in part, with people typically being much older when they are diagnosed with it. She did explain to me that there is evidence of thyroiditis, which might account for the Hurthle cells. But for now, my chance of this being cancer go from 10% to 30%.

    The great news is that I don't have to have another FNA. The lab which took my samples prepped 4 of the 8 samples for Afirma molecular tests in case of the dreaded "inconclusive." So I can likely avoid both another FNA as well as an "exploratory" partial thyroidectomy. Apparently the Afirma test is 94% accurate for diagnosing previously indeterminate nodules? I just have to wait another two weeks. Which is frustrating, but far better than possibly unnecessary surgery. Hopefully I will have the results in time for my first sonogram, and I can consult with my OB at the same time.

    If anyone has some insights about these results, they'd be greatly appreciative. And again, thanks for your support. Your kind words have honestly made me tear up a few times :lovestruc
     
  15. Christine

    Christine Would love to be able to sit on

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    Your pathology reads like several other "inconclusives". A friend of mine also has Hurthle cells. Theyy can be benign or malignant. I think if they are malignant they are other things they can see.

    Here's a little info on them:

     
  16. robynslp

    robynslp Mouseketeer

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    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.
     
  17. Christine

    Christine Would love to be able to sit on

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    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.
     
  18. robynslp

    robynslp Mouseketeer

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    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.
     
  19. Christine

    Christine Would love to be able to sit on

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    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.
     
  20. SingingMom

    SingingMom DIS Veteran

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    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!

    Sent from my iPad using DISBoards
     
  21. branv

    branv <font color=blue>The safety feature in my parents

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    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/cancergoiternodules/a/veracyte-afirma-thyroid-analysis-nodules_3.htm

    Best of luck to you.
     

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