kinda new to this

eva_8519
eva_8519 Member Posts: 4
in Thyroid Cancer #1
my husband is going thought his 2nd treatment and i have some questions. this time cause of the complaints of his belly they are asking him to do a 24hr urine test. they want him to save his urine for 24hr and bring it in for testing but they never said what they where testing for. and because of this they liberalized his diet. his thyroid cancer was so bad they took out the whole thing plus 14 lymphoid in his neck and almost had to go into his chest. so they took things to the extreme 4 week on the low iodine diet. but now they are so laid back with it and i dont know why?

Comments

  • sunnyaz
    sunnyaz Member Posts: 582
    #2
    24 Hour Urine
    Hi Eva,

    There are many reasons for a 24 hour urine test. I am including a link below to help you and your husband understand it better. I believe that when he does this he will keep it refrigerated and pour all of the urine he excretes in that twenty four hour period into a sealed container in the refrigerator. He should have been instructed to used the second urine of the day on the first day and then the first urine of the day on the second day. You have every right to ask his doctor exactly why he is ordering this test.

    http://www.medicinenet.com/script/main/art.asp?articlekey=79565

    It sounds like his Thyroid cancer was very advanced before it was diagnosed. Most people with Thyroid cancer have a Total Thyroidectomy (TT). This is not unusual at all. They want to be sure there is no thyroid tissue left after a TT and RAI (Radioactive Iodine Treatment), this reduces his risk of recurrence and metastasis. They are probably laid back because they don't want to cause fear and panic in him, which is justifiable. Also, they deal with this kind of disease every day but it's new to the two of you. This is a great site for information and support. I recommend both of you reading through many of the posts to gain knowledge and strength. Don't hesitate to ask questions, many of us have been through this or similar situations and can help with understanding some things. Other things will need to be discussed with his doctors.

    The low iodine diet is to prepare for RAI. Has he done the treatment once before and preparing for another? What type of Thyroid Cancer did he have and did they test him for a B-RAF mutation gene. In case you are not familiar with that; it is a gene present in about 43% of people that can make Thyroid cancer more aggressive and more difficult to treat. People with this gene need to be watched more closely for the rest of their lives to stay on top of the disease. I am one of the 43%. I have had three surgeries and two RAI treatments.

    Stay calm, educate yourselves and pray. Lean on your God for strength. He will get you both through this.

    Blessings,
    Julie-SunnyAZ
  • eva_8519
    eva_8519 Member Posts: 4
    #3
    sunnyaz said:

    24 Hour Urine
    Hi Eva,

    There are many reasons for a 24 hour urine test. I am including a link below to help you and your husband understand it better. I believe that when he does this he will keep it refrigerated and pour all of the urine he excretes in that twenty four hour period into a sealed container in the refrigerator. He should have been instructed to used the second urine of the day on the first day and then the first urine of the day on the second day. You have every right to ask his doctor exactly why he is ordering this test.

    http://www.medicinenet.com/script/main/art.asp?articlekey=79565

    It sounds like his Thyroid cancer was very advanced before it was diagnosed. Most people with Thyroid cancer have a Total Thyroidectomy (TT). This is not unusual at all. They want to be sure there is no thyroid tissue left after a TT and RAI (Radioactive Iodine Treatment), this reduces his risk of recurrence and metastasis. They are probably laid back because they don't want to cause fear and panic in him, which is justifiable. Also, they deal with this kind of disease every day but it's new to the two of you. This is a great site for information and support. I recommend both of you reading through many of the posts to gain knowledge and strength. Don't hesitate to ask questions, many of us have been through this or similar situations and can help with understanding some things. Other things will need to be discussed with his doctors.

    The low iodine diet is to prepare for RAI. Has he done the treatment once before and preparing for another? What type of Thyroid Cancer did he have and did they test him for a B-RAF mutation gene. In case you are not familiar with that; it is a gene present in about 43% of people that can make Thyroid cancer more aggressive and more difficult to treat. People with this gene need to be watched more closely for the rest of their lives to stay on top of the disease. I am one of the 43%. I have had three surgeries and two RAI treatments.

    Stay calm, educate yourselves and pray. Lean on your God for strength. He will get you both through this.

    Blessings,
    Julie-SunnyAZ

    he has Papillary thyroid
    he has Papillary thyroid cancer they said it has metastasized into his lungs. his lymphoids in his lungs. from what they talk about. not a large amount but its there. last time on the diet he was on it for 4 weeks. and yes it is just that for the urine test. when he asked the endo was not there and it was not stated in her notes why he was doing the urine test so they could not tell him. i am more worried because last time it was do the diet just like this now its he can eat more iodine. why go from one to the other. he had a lump on his neck for a while before he was seen by a doc they thought he had lymphoma because that is what was swelling. he has had a lot of looking after by all kinda of docs. even his surgeon has followed his case and been checking in with us. we are thankful that he is being seen at duke hospital. what bothers me is how much they stressed the diet last time and its like it doesnt even matter this time. before the 1st treatment over 600 thyroglobulin levels. after 25.
  • miladyx
    miladyx Member Posts: 85
    #4
    eva_8519 said:

    he has Papillary thyroid
    he has Papillary thyroid cancer they said it has metastasized into his lungs. his lymphoids in his lungs. from what they talk about. not a large amount but its there. last time on the diet he was on it for 4 weeks. and yes it is just that for the urine test. when he asked the endo was not there and it was not stated in her notes why he was doing the urine test so they could not tell him. i am more worried because last time it was do the diet just like this now its he can eat more iodine. why go from one to the other. he had a lump on his neck for a while before he was seen by a doc they thought he had lymphoma because that is what was swelling. he has had a lot of looking after by all kinda of docs. even his surgeon has followed his case and been checking in with us. we are thankful that he is being seen at duke hospital. what bothers me is how much they stressed the diet last time and its like it doesnt even matter this time. before the 1st treatment over 600 thyroglobulin levels. after 25.

    how old...
    ... is your husband Eva? Did they check to see if the cancer in the lungs reacted to the first RAI?
  • eva_8519
    eva_8519 Member Posts: 4
    #5
    miladyx said:

    how old...
    ... is your husband Eva? Did they check to see if the cancer in the lungs reacted to the first RAI?

    if they did they did not
    if they did they did not tell us. all i know is his numbers dropped big time. he is 24 years old. he wants to get a new scan but they have not gotten one yet. he goes in for his 2nd treatment on tuesday. should have more info by then
  • amorriso
    amorriso Member Posts: 185
    #6
    eva_8519 said:

    if they did they did not
    if they did they did not tell us. all i know is his numbers dropped big time. he is 24 years old. he wants to get a new scan but they have not gotten one yet. he goes in for his 2nd treatment on tuesday. should have more info by then

    very similar
    Hi there:

    Your husbands case sounds very much like mine. I found a lump in my neck in August, and by september had a full TT done. The surgeon only took 2 other lymph nodes. I did RAI in November and then waited... Oh - I'm 45 years old.

    Unfortunately I had more problems in January, headed back to doctors, and went for a PET scan. Based on that result I had to have a modified neck dissection in March. I used a new surgeon this time - he took 50 nodes, 7 were positive - all on my right side. He dug into my chest as far as he could. I am fortunate that there has not been any metastisis anywhere else - based on the PET scan result.

    I just finished my second RAI this week - higher dose - but they are not as strict with the diet over my way. Just no salt or seafood...I still follow the restrictions from this site though. I also used thyrogen injections instead of going hypo.

    I had my scans on Saturday - results tomorrow. I will let you know what turns up...hopefully nothing.

    Best thoughts to you both this week

    Andree

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