question about 2nd surgery

stevens
stevens Member Posts: 3
edited March 2014 in Thyroid Cancer #1
I am new to this,unfortunately, and I accidentally asked a question on someone's reply. I apologize. I had a thyroid nodule I have been watching for 8 years negative biopsies each time lulled me into a false sense of "no problem". After my last scan showed some things,we decided to go ahead and remove the node. It looked questionable therefore a right hemithyroidectomy and a leftsubtotal were done( don't know what that means) Anyway node results:papillary thyroid carcinoma, follicular variant 2.8 cm Focally present @ inked margin Right lobe hemithyroidectomy Residual small Foci .2cm carcinoma (same as nodule)margins negative Left subtotal no evidence of malignancy.(again i am somewhat confused with all of that)After surgery the plan was to wait for tsh levels to go to 30 or above then an ablation. Unfortunately 5 1/2 weeks later tsh level is only 6. Then I was offered two courses of action 1.Thyrogen then ablation 2. w/ low doses of radioactive iodine weaken remaining tissue, get ths to 30-ablation. I went for a second opinion yesterday and a third option, a second surgery was thrown in to the decision. Has anyone gone through this same thing I would really welcome anything!

Comments

  • Rustifox
    Rustifox Member Posts: 110
    #2
    I would definitely consider a second surgery, which would be far and above better than trying to perform an ablation on unknown sizes of tissues... there must still be a fairly large amount of tissues left after these sub-total surgeries, if your TSH will not rise the way it should. These tissues may be benign, or may be malignant - there is no way of knowing this if they are not removed, unfortunately... and just 'assuming' that the tissues left behind ARE benign is a dangerous route.

    Ablation with radioactive iodine cannot penetrate deep tissue - so if there is a small area of remaining malignancy that is 'deeper' than 1 cm - which isn't very big - it is unlikely that the radioactive iodine would work anyway... 'debulking' any remaining tissue surgically, then following up with ablation AFTER would definitely be your safest route. This would give you the best chance of erradicating the disease there now.

    It is very unusual after finding a 2.8 cm malignancy that they would not recommend a completion thyroidectomy. A total thyroidectomy is required to follow your progress in the long term - one of the ways we monitor our disease is by testing thyroglobulin levels, and if any thyroid tissue remains (either benign or malignant), then thyroglobulin levels would not be of any value in your long term follow up. We do need long term follow up with this, too - it can reoccur at any time, 10, 15 or even 20 years later.

    Here are a few sets of clinical guidelines for you to read through. In the first one, you will find some very helpful 'flowcharts' of what should be done next with various findings - ie, if you find a malignancy of x size, then y should be done next - if you have difficulty interpreting them, please consider talking to your family doctor/PCP about these flowcharts, to get some help with them:
    http://www.nccn.org/professionals/physician_gls/PDF/thyroid.pdf

    This document outlines recommendations (and levels of agreement among endocrinologist's etc) about how to treat thyroid cancer - this should help you make a good decision, too:
    http://www.liebertonline.com/doi/pdf/10.1089/thy.2006.16.ft-1?cookieSet=1

    Lastly, you need a surgeon who is experienced in thyroid cancer. It sounds like you've seen a few opinions on this - I would suggest considering a call to the THYCA facilitator in your area, to find out who is recommended by other patients with thyroid cancer in your area - click on 'support' at this link:
    http://www.thyca.org/

    Follicular variant of Papillary is generally quite easy to treat - but that is providing it is completely surgically excised, and completely treated as soon as it is found. It is very important to get this taken care of at this point, as the most difficult thyroid cancer to treat are those that have been incorrectly or inadequately treated, and left to 'mutate' as time goes by. I hope this helps - there are a bunch of links also available for you on my 'personal webpage' here at CSN, that may help you with your decision too. All the best - but definitely consider going for the second surgery... many of us have, and it is the recommended 'next step'.
  • Rustifox
    Rustifox Member Posts: 110
    #3
    Me again... I realized I forgot to answer a few of your questions, and also address an issue in your posting.

    The surgical names just define the extent of surgical removal of thyroid tissue.

    The extent of the removal dictates the terminology of the operation such as:
    Hemithyroidectomy or Lobectomy is the removal of about half of the thyroid - usually means they've removed a lobe, or sometimes even used to define removal of a portion of a lobe;
    Subtotal thyroidectomy is removal of less than the entire thyroid gland, so very similar - but still just a 'partial' removal of thyroid tissues; Total Thyroidectomy or completion thyroidectomy is complete removal of the thyroid gland. The surgeries are described here, too:
    http://www.endocrineweb.com/surthyroid.html

    But there are also two other things to consider. One is that your 'inked margin' - this is the line they draw on your thryoid before the incision, marking 'where to cut' - showed that there was cancer ON that inked border... so the other half of the inked border left behind likely still has cancer cells, or even a portion of remaining tumor, with size unknown.

    The second thing is that if you have alot of thyroid tissue and go ahead with an ablation, they MUST use a very low dose of radioactive iodine, to prevent problems from radiation thyroiditis, and even the possibility of thyroid storm - both of which can be quite painful and/or dangerous, depending on the severity of the situation. Any subsequent ablation should wait at least another 6 months, some doctors believe up to a year before proceeding - some specialists believe to repeat radioactive iodine too soon will result in the tissues not uptaking the dose near as well as they should.

    The best case scenario for us is to try to get any ablation done in one big dose, with a second one if needed; while having a small dose, followed by a larger dose has occured, and I've heard from a very few members of Thyca who have had this done, this is not a 'usual' protocol in treating thyroid cancer.

    The importance of having thyroid cancer treated correctly and completely cannot be stressed enough, though, Stevens. While science is unsure why/how it happens, they now readily accept that in some of us, untreated or poorly treated papillary cancer does have the ability to mutate to one of the most deadly malignancies known to mankind - anaplastic thyroid cancer. While we are often assured that we are dealing with a 'good' cancer, easily treated in the early stages, incomplete treatment and time can evolve this into something much, much more deadly - so we must not be complacent about thorough treatment, and life long follow up.
  • stevens
    stevens Member Posts: 3
    #4
    Rustifox said:

    Me again... I realized I forgot to answer a few of your questions, and also address an issue in your posting.

    The surgical names just define the extent of surgical removal of thyroid tissue.

    The extent of the removal dictates the terminology of the operation such as:
    Hemithyroidectomy or Lobectomy is the removal of about half of the thyroid - usually means they've removed a lobe, or sometimes even used to define removal of a portion of a lobe;
    Subtotal thyroidectomy is removal of less than the entire thyroid gland, so very similar - but still just a 'partial' removal of thyroid tissues; Total Thyroidectomy or completion thyroidectomy is complete removal of the thyroid gland. The surgeries are described here, too:
    http://www.endocrineweb.com/surthyroid.html

    But there are also two other things to consider. One is that your 'inked margin' - this is the line they draw on your thryoid before the incision, marking 'where to cut' - showed that there was cancer ON that inked border... so the other half of the inked border left behind likely still has cancer cells, or even a portion of remaining tumor, with size unknown.

    The second thing is that if you have alot of thyroid tissue and go ahead with an ablation, they MUST use a very low dose of radioactive iodine, to prevent problems from radiation thyroiditis, and even the possibility of thyroid storm - both of which can be quite painful and/or dangerous, depending on the severity of the situation. Any subsequent ablation should wait at least another 6 months, some doctors believe up to a year before proceeding - some specialists believe to repeat radioactive iodine too soon will result in the tissues not uptaking the dose near as well as they should.

    The best case scenario for us is to try to get any ablation done in one big dose, with a second one if needed; while having a small dose, followed by a larger dose has occured, and I've heard from a very few members of Thyca who have had this done, this is not a 'usual' protocol in treating thyroid cancer.

    The importance of having thyroid cancer treated correctly and completely cannot be stressed enough, though, Stevens. While science is unsure why/how it happens, they now readily accept that in some of us, untreated or poorly treated papillary cancer does have the ability to mutate to one of the most deadly malignancies known to mankind - anaplastic thyroid cancer. While we are often assured that we are dealing with a 'good' cancer, easily treated in the early stages, incomplete treatment and time can evolve this into something much, much more deadly - so we must not be complacent about thorough treatment, and life long follow up.

    Thanks for all of your help. I had the second surgery 1 month ago by a highly respected surgeon who performs only thyroid surgeries. It was successful and he was able to remove most of what was left. A slight amount was left due to cronic inflamation due to unknown origin. Now I am waiting for TSH to raise but a month out, it is only 5.8. Another choice has been given. Thyrogen then ablation. Any one had any experience with this method?

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