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    Old 10-26-2007, 04:01 PM   #1
    matter of time
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    thyroid to be removed - goiters

    My son (19) has been monitored because he has several goiters. The doctor recommended having the whole thyroid removed because it is too much effort to keep sticking needles in all the nodules maybe twice a year for the rest of his life to check for cancer all the time and you never know if the tests were done in the right spot. After thinking about it for almost a year, we are more comfortable with the operation.

    Just wondering..anyone else in this stuation? Did you have operation? Any other comments or experiences with this?

     
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    Old 10-26-2007, 07:13 PM   #2
    Oleander53
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    Re: thyroid to be removed - goiters

    I really hate to hear he is going through all of this..........

    There are other nonevasive ways to monitor this a nodule/goiter.....

    You can have a cancer level drawn once a year.......and or have an iodine uptake scan to see if the nodule is hot or cold.........an ultrasound every few months....

    I have 4 nodules and I have been through the gamut of opinions.....If you start with my 2 Family Doctors, then a Cardiologist, Endo 1 Endo 2 then ENT surgeon then Vascular Surgeon and then Endo 3........I hit the jackpot with Endo 3. Thank God I have good insurance........I have never had a biopsy.

    My nodules were found July 2006..........pressure in my throat sent me to the Doctor........my Mother had her thyroid out at 48 due to cancer so everyone freaked out including me.........I am a medical person and we are the WORST.

    I cannot tell you what to do for your son but my Endo I see now said he would never take my thyroid out unless absolutely necessary....it is an important gland in your body.......to keep doing a biopsy does not tell you the exact picture........he is young to lose his thyroid unless he has too..... nodules can come from many things......even trauma. I am being told my are hereditary.

    We need more information. How big is his nodule? how did you come to find it? has anyone checked his antibodies? What are his labs?

    Has anyone put him on medication to supress his goiter? It worked well for me inspite of reading it never works........ my goiter is gone and thyroid is small.......my nodules are the same 4 but no change..

    Get the book Thyroid for Dummies and read it.........it is a great resource.

    The interesting thing you see through this thread is few come here after being told they HAVE to have it out.......they come here after it is recommended so the decision falls on you to figure out what is the best thing to do.............it can be confusing.........scary and confusing.......

    I have 19 year old twins and if one had these problems I would be worried to death.......I can understand your concern but I would make sure they really needed to have it out........

    I am not sure if I helped.. ....I can only give you my thoughts and experience.

    Can you tell us more.........Oleander

     
    Old 10-27-2007, 03:43 AM   #3
    Nyxie63
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    Re: thyroid to be removed - goiters

    Oleander has given you some great info and things to think about.

    Like Oleander, I've been doing the suppression therapy to try to shrink my nodules. I have a primary complex nodule in the left lobe of 4.3x2.7x2.0cm and two smaller solid nodules in the right lobe, both smaller than 1cm. The primary nodule has gotten a little smaller in the couple of months I've been on suppression therapy and I'm looking forward to seeing my results in another 6 months.

    I get ultrasounds every 6 months to monitor the nodules and an FNA when warranted. I'm currently looking at getting a 3rd FNA due to the size and composition of the primary nodule and am ok with that. Would rather go through the FNA every once in awhile than have to deal with the possible complications of surgery, but then that's just me.

    I think what it really comes down to is comfort level. Would you have more peace of mind if your son tried the suppression therapy first, with surgery as a backup option? Or would you all feel better if it were just done and over with?

     
    Old 10-27-2007, 10:38 AM   #4
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    Re: thyroid to be removed - goiters

    Thank you so much for your replies.

    I like the idea that just a cancer level can be drawn every year..I'll ask about that.

    My son was just at endo for another matter and she did routine feel of the throat and felt the nodules. They do not bother him and he would never even known he had them.

    So shrinking is not important since they do not bother him.

    The doctor's point was that these are always going to be there, new ones forming, constantly growing and changing and since he is so young it really would be less stress (over a lifetime) to be done with it. She is not normally aggressive and is considered top of her field and a teaching doctor. We even went for second opinion and he was considered a top endo and he was a student of our doctor and thought "who is he" to second guess her.

    We left feeling we were going to go ahead with the operatation and she gave us the names of top surgeons. If we were disinclined to have the surgury, she would have done a whole new series of FNA again.

    She also feels the surgury is no big deal. A lot of people have thyroids removed, even babies and do just fine with the thyroid hormone pills.

    Thanks again for your input and allowing me to sort out my thoughts.

    Last edited by matter of time; 10-27-2007 at 10:41 AM.

     
    Old 10-27-2007, 04:10 PM   #5
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    Re: thyroid to be removed - goiters

    First, there are no tumor markers for thyroid cancer (thyroglobulin is for after you have your thyroid removed), (I've discussed thyroglobulin with 2 thyroid surgeons and my endo when asking about my thyroid cancer) and tumor markers are generally not effective unless you know there is cancer there, but they can be red flags (ie, there is CEA for colon cancer, effective after you know you have it, CA-125 is for ovarian, after you know you have it, etc.) I'm not sure which cancer levels Oleander is referring to though, it may be something else entirely, and I'm sure her doctor knows more than I!

    I think you should get a few surgeon's opinions if you can. It's less common for a male, so young to have these issues, which might be why the doctor is being so cautious.

    It's not the worst surgery in the world, and you can live a long and healthy normal life without a thyroid (many have, do and will), but there's no reason to run into surgery either. You have plenty of time to decide what to do.

     
    Old 10-28-2007, 04:30 AM   #6
    3sweeties2005
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    Re: thyroid to be removed - goiters

    Here is my response; I had my thyroid totally removed this past July. I feel great, my moods are better and my medication was totally adjusted in just two months, I run several miles per week, I lift weights, and my weight has never been nor is it now an issue. I am a 40 yr old female, I was found to have a few nodules after an inconclusive biopsy of one I opted to have it totally removed rather than spend the rest of my life going to doctors for ultrasounds, biopsies, labs etc. etc. I thought long and hard about removing a part of my body but after having several endo opinions as well as second surgical opinions I thought why keep my malfunctioning thryoid in to possibly become cancerous. I truly believe (my own opinion) that something that is constantly inflammed such as a thyroid with Hashi's has more chance to become cancerous over time. I had no symptoms of hypothyroidism before my nodules were found other than my TSH levels were a little elevated 5.50, my antibody level was 300 range. Once they got in to do my operation even the ultrasound was incorrect in one nodule dimensions the nodule turned out to be the size of a "golf ball", yet I had no choking sensations when swallowing. The surgeon afterwards was stunned he said he couldn't believe how large the nodule was, my surgery ended up being 3hrs instead of 2hrs.
    Anyway, long story short, go with your gut feel. Your son has options if it's not cancerous at this time, but just know that nothing will "cure" a multi nodular goiter and it will not go away in time.


    A.

     
    Old 10-28-2007, 07:24 AM   #7
    Oleander53
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    Re: thyroid to be removed - goiters

    This is what I get CEA; NSE and Calcitonin and that was after having a scan for hot and cold nodules.....

    Also I get this panel due to some other issues...........

    CEA
    CA 15-3
    CA 19-9
    CA 125
    CA 72-4
    AFP
    BHCG
    B2M
    NSE
    CYFRA 21-1

    Each Doctor is different........but this is what mine recommended.. I hope this is helpful.........

    Oleander

     
    Old 10-28-2007, 01:47 PM   #8
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    Re: thyroid to be removed - goiters

    Quote:
    Originally Posted by 3sweeties2005 View Post
    I was found to have a few nodules after an inconclusive biopsy of one I opted to have it totally removed rather than spend the rest of my life going to doctors for ultrasounds, biopsies, labs etc.

    but just know that nothing will "cure" a multi nodular goiter and it will not go away in time.

    This really follows our thinking. I reviewed my notes and this has been going on for 4 years. Each time my son gets checked, there are more nodules and others grow and change. He also had an inconclusive biopsy.

    The other thing the endo said is people in this situation are relieved after the surgery because they don't have to go through the tests anymore.

    I'm not worried about cancer right now, I know the risk is low. Given my son's situation, I believe he will have it taken out eventually so might as well do it now rather than go though all the ultrasounds and biopsies again.

    I just found out my father had half his thyroid removed over 50 years ago (before I was born) because he had 1 nodule you could see and feel. So I think there is an heredity componant here.

    Now from what I'm reading on the boards, I'm concerned about how long it takes to get the meds right.

    Thank you everyone for your input.

    Last edited by matter of time; 10-28-2007 at 02:09 PM.

     
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