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  • Neck Dissection experiences

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    Old 06-14-2005, 05:23 AM   #1
    lifewithtwins
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    Neck Dissection experiences

    Good morning.

    I am writing to ask those of you who have had a previous neck dissection to share your story.

    I have regional metastasis of thyroid cancer, which has spread to several lymph nodes in my neck. I was diagnosed and had a total thyroidectomy in 2001. Unfortunately, I have had recurrences yearly, treated with radioactive iodine (3 times) and now it has been located in my lymph nodes.

    I would appreciate any input. I am not squeemish and pretty much know what to expect, but would like to hear more on a personal level.

    Thanks.

    Dianne
    Total thyroidectomy 8/01
    RAI 9/01 (100mci)
    RAI 7/03 (150mci)
    RAI 11/04 (200mci)
    PET scan 11/04 - positive for lymph node metastasis
    PET scan 5/05 - positive for lymph node metastasis
    Moving forward to neck dissection

     
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    Old 06-14-2005, 10:46 PM   #2
    xxbrowns
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    Re: Neck Dissection experiences

    Hi. I was diagnosed May '04 with papillary thyroid cancer while pregnant with my 4th child. In my 18th week I had a total thyroidectomy as well as a radical neck dissection. I had about 12 lymph nodes positive. For me, I had it all done at once and it wasn't so bad. I had a hard time moving my left arm up towards my head for a couple of months afterwards.

    Can I ask you something? Is there such a thing as a limit of RAI you receive in a lifetime? You mentioned you had RAI 3 times? What are they telling you now. I've heard that there is a limit and also heard that there isn't a limit. Also, have the spots that are showing up on your scans diminishing any? I expect going through RAI again from what I hear.

    If you have any other questions regarding my surgery, I would be happy to help you in any way. I appreciate any information you can give me. Thanks!

    Chris

     
    Old 06-15-2005, 09:15 AM   #3
    lifewithtwins
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    Re: Neck Dissection experiences

    Hi.

    Thanks for your response.

    I know that the neck dissection is more complicated in comparison with the TT, and was wondering what to expect. I remember with the thyroidectomy (4 years ago). I was in a lot of pain for the first two days or so. Other than that, the recovery was made harder by preparing for the I-131 (going hypo).

    What is your scar like? Is it ear to ear? My surgeon said most likely, he would just have to extend my existing TT scar.

    According to my oncologist, he will not give me any more I-131. He goes by the 500 mCi maximum rule (I've had 450mCi). I know that you can probably go up to 1000mCi, but he considers other risk factors, such as age, and women of child-bearing age. More than 500mCi has proven to cause minor fertility problems. Higher doses make you more at risk for lung scarring and a very, very small possibility of leukemia.

    To be honest, after my last treatment with 200mCi, I am glad I can't have it again. It was a terrible experience.

    Please let me know what your recovery was like. How long before you returned to work, how did you handle your children? (I have 2 year old twins.)

    Thanks for the info.

    Dianne

     
    Old 06-15-2005, 09:18 AM   #4
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    Re: Neck Dissection experiences

    oh yea, I had a PET scan the day of my last I-131 (prior to administration) and it showed several small but positive lymph nodes. I had a repeat PET a few weeks ago which showed the same nodes, and were only millimeters larger. After four years, and three RAI's, we want them OUT!!

     
    Old 06-16-2005, 08:41 PM   #5
    xxbrowns
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    Re: Neck Dissection experiences

    I know how you feel about getting them out. I know that after my 1st RAI dose, I lost my sense of taste for around 4 weeks. I think that was the worst. As far as my scar, it runs from middle of my neck all the way up to my L ear. The tumor was growing up towards my ear. At the time of my diagnosis, I was pregnant with my 4th child and the doctor's aren't sure if pregnant accelerates cancer or not. But my tumor was really, really big. They never told me the number (honestly I don't care to know), but I do know it was big.

    Like I said, the only thing I had trouble with was lifting my L arm. That's the side they really dissected because the tumor was on that side. I am a stay at home mom (I was going to say that I don't work, but that's the furthest thing from the truth), so I don't really know what the doctor's would have told me about that. I do know that I did start driving after around 1 week, they left that up to me. When I went to the ATM, it was a little frustrating because of not having full range of motion with my arm. I don't remember having any trouble with the kids or taking care of them. The only thing I couldn't do was hold my youngest. They told me not to for about a couple of weeks. At the time they were 9, 7 and 2. It wasn't a major issue, I would hold hime while sitting. I remember having weird twinges of pain going up towards my head, I think because of the location of the tumor and where it was heading. You should be just fine. I would think that the TT would be the worse of the two, had I done them separtely. Also, the surgeon did say that there is a lymph node that looks suspicious but because of it's location, they would not be able to remove it at the time of my surgery. They would keep an eye on it, if anything changes, it wouldn't be a problem going in and removing it at a later date.

    You'll be fine. I know once they take the nodes out, mentally I would be so relieved. Having 2 year old twins, you must be young. I wouldn't chance ruining my fertility. But with 4, I am done having children.

    I hope I gave you the answers you were searching. I know you helped me answering my questions I had for you. You really will be fine, I don't believe it'll be any worse than the TT. Take care and let us know how everything goes. Good luck!!! I'll be praying for you.

    Chris

     
    Old 06-17-2005, 05:47 AM   #6
    lifewithtwins
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    Re: Neck Dissection experiences

    ...Actually, I am 36. I am also done having children since we went through years of fertility treatments to begin with. My thyroid cancer was found while going through in-vitro. I had to take six months off to have surgery and I-131. My first recurrence happened when I was pregnant but we opted to wait until I delivered to have my next I-131. The twins were three months old then.

    No more for me...

    Take care and thanks for your info. I'll keep you updated.

     
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