Typical response for atypia of undetermined significance?

Caradavin
Caradavin Member Posts: 49 Member
in Thyroid Cancer #1

Hello. I'm a 37 year old female who had cervical cancer from 2009 to 2011 and had a radical hysterectomy to remove the cancer with no radiation or chemo after.  I have been cancer free since then, but my thyroid is very swollen and has three nodules.  Two of the nodules came back benign but the largest nodule (over 2 cm all around) came back with the Bethesda class of "Atypia of Undetermined Significance" and it says features are consistent with nodular goiter with hyperplasia and atypia.  I've researched and researched only to find that basically another FNA or just the  surgery both have similar results in discovering malignancy. In most cases, the person ends up getting the surgery, but I am not okay with having to be on meds for the rest of my life for something that might not even be cancer!  I just don't see the benefit (especially since most nodules are only cancerous 2% of the time and those that are cancerous are only the worst kind about 5% of the time). I do have issues swallowing sometimes and have hoarseness issues, too (I originally thought my esophagus webbing/stricture issue was causing it).

 I wouldn't even know about this nodule if it didn't show up as suspicious on an unrelated CAT scan. I have decided to get a second opinion, which I'm assuming will mean another FNA - although my research suggests that a second FNA is not necessary in this case.  I don't know; it's all so confusing.  Anyway, my second opinion doc won't even be available to see me until the middle of March; meanwhile, my internist (who did the first FNA) wants me back in six weeks to discuss full removal of the thyroid and surrounding glands.  He basically said there is no rush - so, if it isn't something that needs to be rushed, then it most likely is something that can be monitored on a bi-annual basis instead of surgery - right? I just don't know what to think. I would like to hear other peoples' experiences regarding this situation, if you wouldn't mind.  Opinions are welcome, too.

Comments

  • Baldy
    Baldy Member Posts: 243
    #2
    Choices

    I think getting a second opinion is a good idea.  Try and find someone who has a lot of experience with patients that are in your situation.  Either an endocrinologist who specializes in thyroid problems or an oncologist who specializes in the thyroid, probably the first would be best.  I bet either of these two types of specialists can answer your questions.  I'm surprised you weren't sent to an endocrinologist when the CAT scan discovered the lumps in your thyroid.

    Alan

  • Caradavin
    Caradavin Member Posts: 49 Member
    #3
    Baldy said:

    Choices

    I think getting a second opinion is a good idea.  Try and find someone who has a lot of experience with patients that are in your situation.  Either an endocrinologist who specializes in thyroid problems or an oncologist who specializes in the thyroid, probably the first would be best.  I bet either of these two types of specialists can answer your questions.  I'm surprised you weren't sent to an endocrinologist when the CAT scan discovered the lumps in your thyroid.

    Alan

    Thanks, Alan. I am a bit

    Thanks, Alan. I am a bit disconcerted by the lack of response.  I need to know something - the surgeon says that the only way to know if this atypical hyperplasia is actually cancer is to remove the thyroid.  But there is only a 30% chance it is even cancer at all.  I know I will be very upset about having to take a pill the rest of my life and put up with God knows what else if it's not cancer.  I have decided to put it on the backburner for now - the surgeon says I have plenty of time since thyroid cancers are typically slow growing and easy to get rid of.  I have an appt for a second opinion in March (I know, that's crazy far away) so I am going to wait until after then to make my decision about whether or not I will have this surgery. I need others to let me know what their experiences were (if similar to mine, of course) and what they think of my course of action - is it wise to wait?

  • Baldy
    Baldy Member Posts: 243
    #4
    Caradavin said:

    Thanks, Alan. I am a bit

    Thanks, Alan. I am a bit disconcerted by the lack of response.  I need to know something - the surgeon says that the only way to know if this atypical hyperplasia is actually cancer is to remove the thyroid.  But there is only a 30% chance it is even cancer at all.  I know I will be very upset about having to take a pill the rest of my life and put up with God knows what else if it's not cancer.  I have decided to put it on the backburner for now - the surgeon says I have plenty of time since thyroid cancers are typically slow growing and easy to get rid of.  I have an appt for a second opinion in March (I know, that's crazy far away) so I am going to wait until after then to make my decision about whether or not I will have this surgery. I need others to let me know what their experiences were (if similar to mine, of course) and what they think of my course of action - is it wise to wait?

    Consequences & Decisions

    You're Welcome.

    I hesitate to suggest one course over another.  If you do decide to have your thyroid removed, most likely all you will need from then on is a single small pill (thyroid replaplecement hormone - levothyroxin) once a day.  However, you should be aware that some people (maybe 5%, probably less, more like 1%) don't respond well to levothyroxine, either it has unintended side effects or it doesn't completely replace what your body was getting from your thyroid.  I had a total thyroidectomy almost four years ago and haven't had any problems with my levothyroxin, though I do seem to have a harder time keeping warm in the cold weather than I used to but that may also be do to advancing age (I'm 54).

    Waiting until March would be a problem for me, but only so far as I would be worrying about it until then.  I had a period of waiting when I first had symptoms (a swollen lymph node in my neck) before I was diagnosed.  For me, other people probably wouldn't agree, waiting and not knowing was more difficult than finding out I had cancer.  After the diagnosis I was at least doing something, reading info and talking to endo and surgeon to plan my treatment.  I think they are probably correct that any thyroid cancer you may have won't get worse in the mean time, BUT, some thyroid cancers are more aggresive, BUT AGAIN, the aggresive kinds are far less likely than the slow kind.

    This is a tough call, I can't say what I would do in your circumstances.  In my case everything was much more definate, after they biopsied the swollen node, it was 100% certain I had thyroid cancer.

    I think I would try to get my second opinion quicker.  The only reason I wound up with my surgeon was he had an open appointment sooner than any of the others in that department (head and neck surgery).  By dumb luck, I think he may have been the best qualified to perform my surgery as well.  My Primary Care doctor had recommended one of the other docotors in the department.

    Alan

     

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