Thyroid Cancer that spread into lungs

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Comments

  • Sarah100
    Sarah100 Member Posts: 3
    Veronica57

    I'd like to know how you are doing with this.

  • Sarah100
    Sarah100 Member Posts: 3
    Forming a support network for people with lung metastases

    I'm a 12+ year survivor (since 2001) of stage IV papillary thyroid cancer with lung metastases, first seen in 2005 wanting to be in touch with other thyroid cancer patients with lung metastasis. I feel an uncomfortable level of tightness in my chest with some shoulder and arm pain. My wonderful doctor thinks part of the pain is tension. This is a slow growing cancer, etc. etc. so my life is not at risk. But I would very much like to be in contact with others who have similar circumstances, since this is not a common part of thyroid cancer. I can be reached at oursacreduniverse at gmail dot com. Thank you!

  • RJS
    RJS Member Posts: 5
    lynn2318 said:

    Hi, I just read your story
    Hi, I just read your story and I to had stage IV papillary thyroid cancer which had spread to my lymph nodes in my neck. My thyroglobulin levels are continually going lower but I have told myself and my family if they start going up again I am going to MD Anderson cancer center in Houston TX. I have had a CT scan, PET scan and several full body scans which have been ok, but the fear is always there. My prayers are with you and your doctors. I hope they will become more open with you and communicate better. Take care.

    I would love more info from youe med treatment center. I have stage 4 thy can. after the removal and taking levothyroxine, it has met to my lungs and now I am faced with yet more rad pill treatments. I have read tht the ad pills can also cause luekemia if treated too many times

  • RJS
    RJS Member Posts: 5
    Hannah1 said:

    Lung Metastasis
    I also just found out my thyroid has metastasize to both my lungs. Just finished RAI 6/13/12 and post full body
    scan 6/21/12. Don't know yet if the RAI worked or not. Will see my Dr. This Thursday. Does anybody know
    How long does it takes to have symptoms of shortness of breath after diagnosis?

    LUNG METASISI

    I also have the same symptoms and am schedled for my rad pill treatment in09/2014. I can only pray that this will be the one that ges it. My understanding is tht too many doses of this may also lead to luekemia. is there another way to treat this?

  • RJS
    RJS Member Posts: 5
    Sarah100 said:

    Forming a support network for people with lung metastases

    I'm a 12+ year survivor (since 2001) of stage IV papillary thyroid cancer with lung metastases, first seen in 2005 wanting to be in touch with other thyroid cancer patients with lung metastasis. I feel an uncomfortable level of tightness in my chest with some shoulder and arm pain. My wonderful doctor thinks part of the pain is tension. This is a slow growing cancer, etc. etc. so my life is not at risk. But I would very much like to be in contact with others who have similar circumstances, since this is not a common part of thyroid cancer. I can be reached at oursacreduniverse at gmail dot com. Thank you!

    Support Group

    you can count me in.. I am currently goinghrough the same. I am a 61 yr male in california. I was very pleased to have found this site. I will be going to my second rai dose this september 2014, My first surgery was in 3/2013 stg 4 aggressive enough where they had to open my neck and right shoulder. My recovery has been slow but good. I am not looking foward to the rai treatment but I know this is the only way for this type of cancer. I am fortunate not to have to go through surgery again. This has Met to my lungs... Full of hope and prayers.

  • Janet88
    Janet88 Member Posts: 1
    Papillary carcinona post

    Hi Veronica57,  

    it looks like I'm replying to a 2010 post so I hope you've sought a second opinion and have received the proper treatment for your papillary carcinoma.  If you have not, I'd like to offer a few pieces of advice from my own experiences. 

    I was also diagnosed with pappilary carcinoma about 14 years ago in 2001.  By the time I reached the doctors that actually knew what they were doing, it had spread to the lymph nodes in my neck, below my clavicle and 2 spots in my lungs.  I had been through 3 doctors that had told me that it was either nothing and that it was a cold nodule to others advising me to wait until the nodule in my neck was bigger in order to better biopsy.  It was only after I moved to Massachusetts where a really great doctor saw me and immediately refered me to a radiologist who performed an ultrasound guided needle biopsy.  At that point it was all over my neck and he drew several samples.  

    After surgery, they confirmed it was cancer and referred me to one of the top endocrinologists who deals mostly with thyroid cancer in Boston.  I recieved one big dose of radioactivd iodine and later had several full body PET scans to confirm that the cancer was gone.

    Every year, I have an ultrasound of the neck to make sure there are no changes and a thyroglobulin blood test.  

    If you are not satisfied with your doctors, seek several other opinion. You definitely should NOT wait until the cancer in your lungs get gets bigger.  Whomever you are seeing is not skilled enough to treat This disease.  I hope you have been treated properly since your post.  

  • Clett
    Clett Member Posts: 2
    Sarah100 said:

    Forming a support network for people with lung metastases

    I'm a 12+ year survivor (since 2001) of stage IV papillary thyroid cancer with lung metastases, first seen in 2005 wanting to be in touch with other thyroid cancer patients with lung metastasis. I feel an uncomfortable level of tightness in my chest with some shoulder and arm pain. My wonderful doctor thinks part of the pain is tension. This is a slow growing cancer, etc. etc. so my life is not at risk. But I would very much like to be in contact with others who have similar circumstances, since this is not a common part of thyroid cancer. I can be reached at oursacreduniverse at gmail dot com. Thank you!

    Sarah100

    Hello Sarah, I was diagnosed with distant metastasis to my lungs and bones this year January 2018.  I am scheduled for PET scan, whole body scan, cat scan of chest, pelvis, abdomen, neck and MRI of my brain May 21 so see if there is any uptake or the lesion has gown bigger.   I am also stage IV and I am 75 years old. I hope to survive like you but I don't know.  I have written you an email but maybe you did not receive it.  How are you doing so far.  I'd like to know more about your medical situation and how you are doing.  I know your post is 4 years old but I hope to hear from you and communicate with you.  Many thanks.

  • jackie1909
    jackie1909 Member Posts: 2
    Clett said:

    Sarah100

    Hello Sarah, I was diagnosed with distant metastasis to my lungs and bones this year January 2018.  I am scheduled for PET scan, whole body scan, cat scan of chest, pelvis, abdomen, neck and MRI of my brain May 21 so see if there is any uptake or the lesion has gown bigger.   I am also stage IV and I am 75 years old. I hope to survive like you but I don't know.  I have written you an email but maybe you did not receive it.  How are you doing so far.  I'd like to know more about your medical situation and how you are doing.  I know your post is 4 years old but I hope to hear from you and communicate with you.  Many thanks.

    Hi Clett,my daughter has metastasis to lungs.

    She did not have growth for seven years after ioidine tx .her cancer is now growing again,with some shortness of breath Her Dr at philly wants her to start medication 

    She knows once that is started it will not go well, what are you doing as treatment now?

  • jackie1909
    jackie1909 Member Posts: 2
    Sarah100 said:

    Forming a support network for people with lung metastases

    I'm a 12+ year survivor (since 2001) of stage IV papillary thyroid cancer with lung metastases, first seen in 2005 wanting to be in touch with other thyroid cancer patients with lung metastasis. I feel an uncomfortable level of tightness in my chest with some shoulder and arm pain. My wonderful doctor thinks part of the pain is tension. This is a slow growing cancer, etc. etc. so my life is not at risk. But I would very much like to be in contact with others who have similar circumstances, since this is not a common part of thyroid cancer. I can be reached at oursacreduniverse at gmail dot com. Thank you!

    My daughter has lung metastases

    Hello Sarah Please reply and let me know if you are still responding on this support group board. Thanks jackie