Thyroid cancer in chest around major blood supply

ErinMom8
ErinMom8 Member Posts: 6
edited March 2014 in Thyroid Cancer #1
We just found out January 2 my daughter only 21 has thyroid cancer. Everytime we seen another doctor the news got worse. It has gone to her chest and wrapped around a major blood supply. I am so scared, I can't loose her and she has a 2 year old son that needs her. We found a chest surgeon that will operate on the chest after the thyroid doctor takes out the thyroid. Even with CT scans the chest surgeon is not sure if it is laying or wrapped around. He won't know until he goes in there. Her operation is set up for April 17. Has anyone else gone through a similar experience?

Comments

  • Summer76
    Summer76 Member Posts: 9
    #2
    I am also a thyroid cancer patient, I was diagnosed at age 24. My experience is different but I read your post and wanted to wish you and your daughter the best and I hope everything goes well for her. Good Luck and take care of eachother.
    Summer
  • ErinMom8
    ErinMom8 Member Posts: 6
    #3
    Summer76 said:

    I am also a thyroid cancer patient, I was diagnosed at age 24. My experience is different but I read your post and wanted to wish you and your daughter the best and I hope everything goes well for her. Good Luck and take care of eachother.
    Summer

    Thank you so much for your kind words.
  • denyse
    denyse Member Posts: 17 Member
    #4
    it's very unusual to go to chest in a young girl with thyca. Does she have papillary thyca? What was her pathology? Tumor size/ lymph node involvment, etc? Sounds like vascular invasion but not sure. Many have vascular invasion and it does not mean much in thyca they say. My 20 yr old daugther had thyca. Papillary thyca with T2, N1a, Mx and lympovascular invasion. She had her tg checked 8 wks post treatment which indicated .4 which is pretty good but still needs a possible second treatment of ra131 if 6 months post ra131 first treatment shows anything. We'll know more in June.
    Your situation sounds very unusual. Did she have any symptoms or did you just find the lump in her neck? Good luck and all my best to you all. You are in my prayers. DP
  • denyse
    denyse Member Posts: 17 Member
    #5
    also try going to yahoo newgroups for their thyroid cancer msg boards since they may be able to help too. Hang in there and blessings. DP
  • ErinMom8
    ErinMom8 Member Posts: 6
    #6
    denyse said:

    it's very unusual to go to chest in a young girl with thyca. Does she have papillary thyca? What was her pathology? Tumor size/ lymph node involvment, etc? Sounds like vascular invasion but not sure. Many have vascular invasion and it does not mean much in thyca they say. My 20 yr old daugther had thyca. Papillary thyca with T2, N1a, Mx and lympovascular invasion. She had her tg checked 8 wks post treatment which indicated .4 which is pretty good but still needs a possible second treatment of ra131 if 6 months post ra131 first treatment shows anything. We'll know more in June.
    Your situation sounds very unusual. Did she have any symptoms or did you just find the lump in her neck? Good luck and all my best to you all. You are in my prayers. DP

    My daughter has had thyroid problems since she was about 10 but it has only been the last 8 months that her thyroid was so big and they took a biospy and the firsst was negative then a few month later they took another and it showed cancer. I did not understand any of what you spoke about T2, N1a,etc. My daughter had her operation April 17 and the thyroid surgeon felt the operation went very well and he thought he got all out through a cut in her throat and they did not have to open the chest. She had her CT scan last week and got the word that there is some left in the chest so we see the chest surgeon tomorrow to see how much and how he wants to proceed. After she is done with operations and is healed she will have the iodine radioactive treatment which we do not know much about. I felt our prays were answered but now we have a set back. Your daughter and mine is too young to have to go through this. My daughter has a 2 and half old son she has to be around to raise and see him grow up.
  • amyrhona
    amyrhona Member Posts: 10
    #7
    please call MD Anderson
    I don't mean to scare you, but I was 31 when I was diagnosed with thyroid cancer that had moved into my chest, including my blood vessels, too. I had to have surgery where they removed things in the middle of my chest, too. I am finally getting the right care after thinking I was getting good care where I lived. I called MD Anderson in Houston, TX and told them what was going on and what my original diagnoses were and they wanted to see me IMMEDIATELY. I am being flown there for free this Sunday. I have several appointments just on Monday alone. My own doctor still doesn't get it that something is wrong. PLEASE get your daughter to these amazing specialists. They understand these things WAY more than any other doctors. Their website is www.mdanderson.org

    Blessings,

    Amy

    P.S. By the way, I am an RN but am in no way affiliated with MD Anderson. I just have been really impressed by them so far.
  • gailaj
    gailaj Member Posts: 36
    #8
    amyrhona said:

    please call MD Anderson
    I don't mean to scare you, but I was 31 when I was diagnosed with thyroid cancer that had moved into my chest, including my blood vessels, too. I had to have surgery where they removed things in the middle of my chest, too. I am finally getting the right care after thinking I was getting good care where I lived. I called MD Anderson in Houston, TX and told them what was going on and what my original diagnoses were and they wanted to see me IMMEDIATELY. I am being flown there for free this Sunday. I have several appointments just on Monday alone. My own doctor still doesn't get it that something is wrong. PLEASE get your daughter to these amazing specialists. They understand these things WAY more than any other doctors. Their website is www.mdanderson.org

    Blessings,

    Amy

    P.S. By the way, I am an RN but am in no way affiliated with MD Anderson. I just have been really impressed by them so far.

    sending best wishes with you to TX
    Hi Amy,
    Just wanted to wish you well with your trip to TX (we corresponded a few months ago on this board, if you remember). Will be thinking of you, Gail
  • denyse
    denyse Member Posts: 17 Member
    #9
    I saw your post and wanted to comment
    My daugther had thyca in 10/07. She had a 29 tg after surgery and before treatment. A 3 cm tumor in neck and some nodes were microscopically positive for pap thyca. She had treatment in 12/07 150 mci ra131 after a pretreatment scan revealed some neck mets. Then after first treatment as werid uptake in lower neck was revealed and the apparent pretreatment mets did not take up treatment like they would have liked. Nothing was done but wait and see approach. Then in june TG stimulated with thyrogen was 6.9 so they decided to wait to see since it went down quite a bit from first treatment. Then in january 09, still had tg hypo stimulated of 8.3 so did another 150 ra131. After this treatment they did a supressed tg and it was .3 but have not done the stimulated tg yet because she was gone for summer.

    In january after the 150mci the post scan showed uptake in chest near mediastinum. They nuc med doc was stumped and so our endo sent to ohio (a friend who is thyca doc and very good) and they said she should be seen by chest surgeon. Then a week later they did an extensive PET and it was negative.. nothing in chest at all. So they said it was most likely physiologic thymus uptake.
    My rationale was this. IF it was iodine avid (whatever it was) and it had a second 150 mci of ra131, it was iodine avid disease. If it took up FDG from PET then we would have problems since FDG PET contrast is normally not iodine avid disease, hence cannot be treated with ra131. Plus I would think the TG would be very high when stimulated (off meds or thyrogen) if the thyca was in chest.
    Now she is scheduled for a 7 months post treatment thyrogen stimulated scan and bloodtest.
    She never went to chest surgeon since this PET revealed nothing.

    Was your chest disease confirmed not to be iodine avid, and that's why they did the surgery?How did they find the chest thyca by scan or PET or Ultrasound or CT?

    What was your TG stimulated after hypo or thyrogen after your first surgery?
    Sorry for all the questions but your case is similar to my daugthers. She's 21 and like I said, on her way to more testing. YOu are in my prayers. Please email directly if you can. denmurpar@yahoo.com
    Denise
  • denyse
    denyse Member Posts: 17 Member
    #10
    How did things go with your daugther
    I remember reading your post a while back and have a daughter with thyca too. How did her case go? Did they do surgery or just treatment? I just checked on with boards and saw your post. I hope all is well with you. Take care, denise
  • denyse
    denyse Member Posts: 17 Member
    #11
    amyrhona said:

    please call MD Anderson
    I don't mean to scare you, but I was 31 when I was diagnosed with thyroid cancer that had moved into my chest, including my blood vessels, too. I had to have surgery where they removed things in the middle of my chest, too. I am finally getting the right care after thinking I was getting good care where I lived. I called MD Anderson in Houston, TX and told them what was going on and what my original diagnoses were and they wanted to see me IMMEDIATELY. I am being flown there for free this Sunday. I have several appointments just on Monday alone. My own doctor still doesn't get it that something is wrong. PLEASE get your daughter to these amazing specialists. They understand these things WAY more than any other doctors. Their website is www.mdanderson.org

    Blessings,

    Amy

    P.S. By the way, I am an RN but am in no way affiliated with MD Anderson. I just have been really impressed by them so far.

    Amy, regarding your case
    I accidently posted this is gail on your commment so I cut and pasting it to you. Sorry. Thanks for any feedback on your case. : )

    My daugther had thyca in 10/07. She had a 29 tg after surgery and before treatment. A 3 cm tumor in neck and some nodes were microscopically positive for pap thyca. She had treatment in 12/07 150 mci ra131 after a pretreatment scan revealed some neck mets. Then after first treatment as werid uptake in lower neck was revealed and the apparent pretreatment mets did not take up treatment like they would have liked. Nothing was done but wait and see approach. Then in june TG stimulated with thyrogen was 6.9 so they decided to wait to see since it went down quite a bit from first treatment. Then in january 09, still had tg hypo stimulated of 8.3 so did another 150 ra131. After this treatment they did a supressed tg and it was .3 but have not done the stimulated tg yet because she was gone for summer.

    In january after the 150mci the post scan showed uptake in chest near mediastinum. They nuc med doc was stumped and so our endo sent to ohio (a friend who is thyca doc and very good) and they said she should be seen by chest surgeon. Then a week later they did an extensive PET and it was negative.. nothing in chest at all. So they said it was most likely physiologic thymus uptake.
    My rationale was this. IF it was iodine avid (whatever it was) and it had a second 150 mci of ra131, it was iodine avid disease. If it took up FDG from PET then we would have problems since FDG PET contrast is normally not iodine avid disease, hence cannot be treated with ra131. Plus I would think the TG would be very high when stimulated (off meds or thyrogen) if the thyca was in chest.
    Now she is scheduled for a 7 months post treatment thyrogen stimulated scan and bloodtest.
    She never went to chest surgeon since this PET revealed nothing.

    Was your chest disease confirmed not to be iodine avid, and that's why they did the surgery?How did they find the chest thyca by scan or PET or Ultrasound or CT?

    What was your TG stimulated after hypo or thyrogen after your first surgery?
    Sorry for all the questions but your case is similar to my daugthers. She's 21 and like I said, on her way to more testing. YOu are in my prayers. Please email directly if you can. denmurpar@yahoo.com
    Denise
  • miladyx
    miladyx Member Posts: 85
    #12
    amyrhona said:

    please call MD Anderson
    I don't mean to scare you, but I was 31 when I was diagnosed with thyroid cancer that had moved into my chest, including my blood vessels, too. I had to have surgery where they removed things in the middle of my chest, too. I am finally getting the right care after thinking I was getting good care where I lived. I called MD Anderson in Houston, TX and told them what was going on and what my original diagnoses were and they wanted to see me IMMEDIATELY. I am being flown there for free this Sunday. I have several appointments just on Monday alone. My own doctor still doesn't get it that something is wrong. PLEASE get your daughter to these amazing specialists. They understand these things WAY more than any other doctors. Their website is www.mdanderson.org

    Blessings,

    Amy

    P.S. By the way, I am an RN but am in no way affiliated with MD Anderson. I just have been really impressed by them so far.

    hi Amy!
    do you know if you have a particular variant of papillary that makes it more aggressive? just curious...
  • JAWsSavannah
    JAWsSavannah Member Posts: 57
    #13
    denyse said:

    How did things go with your daugther
    I remember reading your post a while back and have a daughter with thyca too. How did her case go? Did they do surgery or just treatment? I just checked on with boards and saw your post. I hope all is well with you. Take care, denise

    In situations such as these
    In situations such as these it seems the thyroglobulin level will be the key to the question--is this Ca or an anomaly? If your Tg level is around 1 or less you are disease-free. If it's between 2 and, say, 10, you have something very small somewhere. When Tg levels are climbing with each blood test there are mets at work that need to be addressed.

    My Tg level fell to about 12 a few months after my first RAI ablation, but then started climbing. Two years later and after another RAI ablation it had reached 1225! That's when the doctors at the Mayo clinic got me in the pazopanib clinical trial. After about 4 months it has fallen back to 112, not a good number, still, but much better than 1225!
  • Unknown
    Unknown
    #14
    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #15
    denyse said:

    I saw your post and wanted to comment
    My daugther had thyca in 10/07. She had a 29 tg after surgery and before treatment. A 3 cm tumor in neck and some nodes were microscopically positive for pap thyca. She had treatment in 12/07 150 mci ra131 after a pretreatment scan revealed some neck mets. Then after first treatment as werid uptake in lower neck was revealed and the apparent pretreatment mets did not take up treatment like they would have liked. Nothing was done but wait and see approach. Then in june TG stimulated with thyrogen was 6.9 so they decided to wait to see since it went down quite a bit from first treatment. Then in january 09, still had tg hypo stimulated of 8.3 so did another 150 ra131. After this treatment they did a supressed tg and it was .3 but have not done the stimulated tg yet because she was gone for summer.

    In january after the 150mci the post scan showed uptake in chest near mediastinum. They nuc med doc was stumped and so our endo sent to ohio (a friend who is thyca doc and very good) and they said she should be seen by chest surgeon. Then a week later they did an extensive PET and it was negative.. nothing in chest at all. So they said it was most likely physiologic thymus uptake.
    My rationale was this. IF it was iodine avid (whatever it was) and it had a second 150 mci of ra131, it was iodine avid disease. If it took up FDG from PET then we would have problems since FDG PET contrast is normally not iodine avid disease, hence cannot be treated with ra131. Plus I would think the TG would be very high when stimulated (off meds or thyrogen) if the thyca was in chest.
    Now she is scheduled for a 7 months post treatment thyrogen stimulated scan and bloodtest.
    She never went to chest surgeon since this PET revealed nothing.

    Was your chest disease confirmed not to be iodine avid, and that's why they did the surgery?How did they find the chest thyca by scan or PET or Ultrasound or CT?

    What was your TG stimulated after hypo or thyrogen after your first surgery?
    Sorry for all the questions but your case is similar to my daugthers. She's 21 and like I said, on her way to more testing. YOu are in my prayers. Please email directly if you can. denmurpar@yahoo.com
    Denise

    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #16
    JAWsSavannah said:

    In situations such as these
    In situations such as these it seems the thyroglobulin level will be the key to the question--is this Ca or an anomaly? If your Tg level is around 1 or less you are disease-free. If it's between 2 and, say, 10, you have something very small somewhere. When Tg levels are climbing with each blood test there are mets at work that need to be addressed.

    My Tg level fell to about 12 a few months after my first RAI ablation, but then started climbing. Two years later and after another RAI ablation it had reached 1225! That's when the doctors at the Mayo clinic got me in the pazopanib clinical trial. After about 4 months it has fallen back to 112, not a good number, still, but much better than 1225!

    This comment has been removed by the Moderator
  • aykt36
    aykt36 Member Posts: 28
    #17
    Summer76 said:

    I am also a thyroid cancer patient, I was diagnosed at age 24. My experience is different but I read your post and wanted to wish you and your daughter the best and I hope everything goes well for her. Good Luck and take care of eachother.
    Summer

    thanks
    thanks



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