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Alternatives to thyroid surgery?

Posted , 8 users are following.

jules87783
jules87783

I have a nodule in my thyroid and recently had a fine needle aspiration which came back indeterminate. They also did an "affirma gene expression", which is some sort of genetic testing of the biospy, and it came back "suspicious". According to my doctor, that means there is a 40% chance it is cancerous and due to that, they want to remove the rest of my thyroid and I'll have to take thyroid medication the rest of my life (a long time, I'm not that old). 

I feel like I'm being forced into the surgery without any alternatives.

Any advice would be welcome. Thank you!

 

1 like, 8 replies

8 Replies

  • shellyC19
    shellyC19 jules87783

    Posted

    Hello Jules:

    My name is Shelly and I am a nurse in the USA.  I have Hashimoto's thyroid disease and have had it since 1987.  I am 54 now.

    First of all, sorry to hear about the nodule. I have 3 nodules but none are cancerous.

    My advice is this:

    1. They can remove the LOBE that the nodule is on.  There are 2 lobes so if it is on one lobe they could remove that one leaving you half.  Half is better than none!

    Most people can live okay on half and may or may not need any replacment hormone.

    2. See another doctor and get a 2nd opinion on the nodule!  Nodules can be small and can cause the thyroid to act up also. Do you have a family history of cancer of the thyroid?  I would see an Endocrine or Onocologist  Surgeon who knows more than just an Endocrinologist.

    3. You can watch it, and decline any surgery!  You would need to have an ultrasound maybe once or  twice a year to see if it changes or biposy of it.  This would be playing the odds that it is not cancerous. Thyroid cancer is kind of rare and most nodules are not cancerous. Ask for your blood work, RBC's and Sodium levels, any TPOA  (Thyroid antibodies) antibodies, WBC's,  etc...blood work goes off when you have cancer.

    4. RAI (radioactive Iodine) kills off he thyroid gland and then you will be Hypothyroid but will have to take replacement meds.

    I am not in favor of it, just putting it here for informational purposes.

    So I think you need to ask to see where the nodule is and research the findings and see another doctor like I said above.

    Keep me posted on how you do,

    Shelly

    • jules87783
      jules87783 shellyC19

      Posted

      Hi Shelly, 

      Thank you for the detailed reply. I learned a lot!

      I probably should have posted a longer query and given more detail.

      I got one lobe removed about 10 years ago because of nodules which turned out to be benign and I still have 49% of my thyroid functioning.

      I moved since then so had to start with new doctors. Although I took the time to transfer my medical records, it doesn't feel like my endocronoligist read them.

      Since then I've gotten ultrasounds every year and had my T4 and TSH checked, which have been in what the endocronlogoist calls an "acceptable" range. 

      The nodules have grown a little every year which is what led my doctor to do the fine needle aspiration. 

      My mother had her thyroid removed when she was in her 70s. Her nodules were benign and she hates being on thyroid medication.

      I am definitely looking at options other than surgery and am proceeding very cautiously. 

      Thanks again!

       

    • shellyC19
      shellyC19 jules87783

      Posted

      Hello Jules:

      I would watch it by doing Ultrasounds once a year.  If they are slow in growing it does not seem to be cancer.  Nodules can be from cysts, or infections of the gland, sometimes scar tissue, and they can be very small or over an inch big.  When they get over an inch or so then they tend to worry more.  I have 3 nodules under an inch, and I am still kicking...LOL.

      Maybe your new doctor never read your file as you say, so you can bring up the points you know.

      If you would have cancer of the thyroid, blood work such as RBC's & Sodium, WBC's, etc.. would show abnormal levels.

      I hate to see anyone lose the thyroid completely because we need the gland. Living on meds is no fun either.

      Most nodules are benign and can cause the gland to go Hyper or Hypo. So if you are good in your TSH and T4 levels then that is a good sign. because cancer would mess those levels up.

      Try and ask for a copy of the biopsy report (they may charge you for it) and we can go over it if you wish.

      Keep me posted.

      Shelly

    • gina39015
      gina39015 shellyC19

      Posted

      Hi Shelly,

      What a reliefe to find your conversation. I have similar issue: have thyroid nodule on my left side (2.0X1.7X3.1cm). Fine Needle Aspiration results came as: "FindingsModerate colloid and atypical follicular cells, some with nuclear grooves in microfollicular arrangements". Doctor wants to remove it , but I would like to try alternative options if possible. Any recomendations? Also whats your thougts , should I do that genetic testing?

      You input and all suggesstions are highly appreciated.

      Regards,

      Gina  

       

    • shellyC19
      shellyC19 gina39015

      Posted

      Hello Gina:

      Thanks for contatcing me.  I am a nurse in the USA and have had Hashimoto's thyroid disease since 1987 and 3 nodules also.

      We only get 1 thyroid and we need the gland and it does not grow back or regnerate itself.

      Nodules can be from a few factors, lymph tissue or redundant fat cells and some are thyroid tissue that replicates itself but it does not mean cancer.

      So atypical means not conforming as regular tissue.  Colloid is a tissue that is gelatainous or jelly like. Some nodules are cystic like and have an old fluid or jelly like matter in them. They are mostly NOT CANCEROUS and are clumping together and made a cyst there or nodule.  Cysts will swell and sometimes go back down as the cellular fluid can dry up over time and or be drained if they can reach it.

      Cancer makes a hard lump normally and a dimpled appearance on the skin and usually is not colloid.

      Nuclear is relating to the cells and microfollicular means small areas with grooves which goes along with cysts like behavior.

      Most common causes is an old infection and it made a cyst.  Some people also have a family history of it. Some women even get them on their ovaries too. They call it Polycystic Ovarian disease. NOT at all a cancer! Also autoimmune diseases can make you more prone to cysts/nodules.

      Removal of the lobe of your thyroid should be a last resort!!!   Of course the only way to really know what is there is to remove it and send it to pathology.

      They can watch it by doing an ultrasound in 1 years time, and if it changes size then consider surgery if needed. A naturopath can also help find natural diet plans and balance your immune system out by way of natural herbs and plant meds.

      I would see if it is making you Hypothyroid, as some of these cysts can make it hard for a lobe to do it's job.  You can take replacement hormone for that.

      FNA (fine needle aspiration) can give you a good idea of the makeup of the nodule.  So I am pretty sure it is a cyst and not a big problem.

      As long as you are not have swallowing problems or any sticking feeling in your throat or problems in breathing you can watch it. 

      Eat a good diet and reduce risk to infections helps. If you had a lot of viruses in life or Epstein Barr disease also known as MONO, amke sure they test for Antibodies test called TGab and ANA Direct and TPOA. These blood tests are simple and can show an autoimmune problems.

      Avoid Gluten and junk foods, make sure all minerals calcium, potassium, sodium, and zinc, and magnesium are okay.  Make sure your Red Blood count is okay.  Cancer can make Red count and sodium go off.

      Any questions just ask,

      Shelly

    • sonia69863
      sonia69863 shellyC19

      Posted

      Hi Shelly:

      I just came across this site.

      I have a thyroid nodule which, after FNA, is considered to be suspicious. The Doctor wants to remove half (possibly all) of my thyroid.

      Thing is, I have had hypothyroid (and sometimes hyperthyroid) symptoms for about 7 years now. I initially thought these symptoms were depression and anxiety, so I treated myself with natural remedies for same. Now I'm not sure what to think. Wouldn't removing even a part of my thyroid cause me to have even worst hypothyroid symptoms?

      Thank you in advance for your help.

  • carole56642
    carole56642 jules87783

    Posted

    I had a hemithyroidectomy in Feb 2014 because I had lumps and cysts in it, which they could not biopsy. 

    I am ok with the thyroid now, albeit quite tired and wondering if I need thyroxin.  But I have been left with a lot of facial pain and headache, which from another thread on here, looks like may be caused by the intubation during the op. 

    Now the other side of my thyroid has lumps, my consultant wants to see me, and I think I'll be advised to have second side removed.  Bit worried this will give me more face pain and also unsure about having to take drugs for the rest of my life.  I'm 57.

  • carmel_67141
    carmel_67141 jules87783

    Posted

    I just had a talk with my doctor and he telling me the same thing . He sent me to surgeon ( sorry for my typo) and telling me its 40% cancer and 60% isnt . I am going to schedule another appointment with another doctor ( I am get a copy of my records and test results) see what they say. My doctor saying cause of growth and family history of cancer (breast, stomach,etc ) so it very important that I am making the right choice. I feel like there might be might treatments other than surgery
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