Spread to lymph nodes.

Kristi1
Kristi1 Member Posts: 1
edited March 2014 in Thyroid Cancer #1
I was just diagnosed with papillary thyroid cancer 2 months ago, I had my thyroid removed along with 20 lymph nodes in my neck that were all positive for cancer. They tell me that most of my lymph nodes are most likely involved...has anyone else had metastasis to lymph nodes? I also am to have my first dose of I131 tx next week and the doctor tells me my dose will be 200mci...what can I expect after I take it. I am really really scared right now.

Comments

  • kayetera
    kayetera Member Posts: 13
    #2
    Hi Kristi,

    I am sorry to hear that your lymph nodes are positive. I also have papillary thyroid cancer and just finished my first round of RAI (radioactive iodine) treatment. My dose was 100 mCi of I 131. My post RAI whole body scan is showing possible lymph node mets. I still don't have a definitive diagnosis on the lymph node involvement yet.

    A higher dose of RAI is standard when there is lymph node involvement. Has your endocrinologist discussed the treatment process with you? Are you having yours outpatient or in the hospital? I had mine outpatient and had to follow some precautions to avoid exposing my family and pets to my radioactivity.

    Be sure to drink plenty of water and suck on sour lemon drops or lemon wedges. This will protect your salivary glands. RAI tends to affect the salivary glands, some have swelling, dry mouth. I didn't have any symptoms, but there was uptake in my salivary glands on the WBS (whole body scan).

    Also, some doctors recommend a low iodine diet (LID) prior to your RAI tx. Others just say to avoid seafood, processed food, and those foods high in sodium.

    I participate in another online support group through Yahoo. It is sponsored by ThyCa.org
    There is a lot of people there who have lymph node involvement that may be able to answer your questions who have longterm experience. http://health.groups.yahoo.com/group/Thyca/

    Best Regards
    Teresa
    Texas
  • ldow
    ldow Member Posts: 1
    #3
    kayetera said:

    Hi Kristi,

    I am sorry to hear that your lymph nodes are positive. I also have papillary thyroid cancer and just finished my first round of RAI (radioactive iodine) treatment. My dose was 100 mCi of I 131. My post RAI whole body scan is showing possible lymph node mets. I still don't have a definitive diagnosis on the lymph node involvement yet.

    A higher dose of RAI is standard when there is lymph node involvement. Has your endocrinologist discussed the treatment process with you? Are you having yours outpatient or in the hospital? I had mine outpatient and had to follow some precautions to avoid exposing my family and pets to my radioactivity.

    Be sure to drink plenty of water and suck on sour lemon drops or lemon wedges. This will protect your salivary glands. RAI tends to affect the salivary glands, some have swelling, dry mouth. I didn't have any symptoms, but there was uptake in my salivary glands on the WBS (whole body scan).

    Also, some doctors recommend a low iodine diet (LID) prior to your RAI tx. Others just say to avoid seafood, processed food, and those foods high in sodium.

    I participate in another online support group through Yahoo. It is sponsored by ThyCa.org
    There is a lot of people there who have lymph node involvement that may be able to answer your questions who have longterm experience. http://health.groups.yahoo.com/group/Thyca/

    Best Regards
    Teresa
    Texas

    Spread to my lymph nodes
    This is the first time I have been on this site and i'm really hoping it helps.

    I found out I had thyroid cancer in 2005 and had a total thyroidectomy in 2006. I had the radioactive iodine treatment to kill anything that was left and also had a scan which was good. I have since had 2 more scans and several ultrasounds which up until my last one in October were all good. They found a lymph node they were concerned about and did a biopsy which was awful. It is cancer and they set my referral for surgery as urgent. Not sure how to take that. I am really scared. I read a few stories like mine and they are making a little more nervous about my own situation. They said they are going to take all the lymph nodes out on the right side of my neck. This is just great timing.....being very sarcastic. Not a great year for me except that I met and married a great man and my children are healthy.

    Any advice would be greatly appreciated.

    Linda
  • Baldy
    Baldy Member Posts: 243
    #4
    ldow said:

    Spread to my lymph nodes
    This is the first time I have been on this site and i'm really hoping it helps.

    I found out I had thyroid cancer in 2005 and had a total thyroidectomy in 2006. I had the radioactive iodine treatment to kill anything that was left and also had a scan which was good. I have since had 2 more scans and several ultrasounds which up until my last one in October were all good. They found a lymph node they were concerned about and did a biopsy which was awful. It is cancer and they set my referral for surgery as urgent. Not sure how to take that. I am really scared. I read a few stories like mine and they are making a little more nervous about my own situation. They said they are going to take all the lymph nodes out on the right side of my neck. This is just great timing.....being very sarcastic. Not a great year for me except that I met and married a great man and my children are healthy.

    Any advice would be greatly appreciated.

    Linda

    lymph nodes
    Hi Linda,

    I was diagnosed with papillary in 1/2011 and had a total thyroidectomy and 50+ nodes removed from the right side of my neck. As it turned out, only two of the nodes tested positive for cancer, but I'm glad the surgeon took as many nodes as he did. I've read quite a few accounts on this site of people having surgery multiple times to remove lymph nodes. There's no guarantee he got all the cancer in my neck, but considering the number of nodes he took, I think it's more likely he got it all.

    As far as the surgery, I was in the hospital 6am and home by 2pm the next day with four to five hours in surgery. I had very little site pain but I did have a pretty bad sore throat and no voice for a few days after {from being entubated during the surgery.} I had two drains in my neck for a little over a week, which was annoying. I've lost the skin feeling but not the muscle feeling on the right side of my neck. I can feel if I touch with my finger, but not if I very lightly brush it and also I have no sense of temperature there either. The incision was what he called an apron incision and I was glued back together not stitched or stapled. The scar, which has mostly faded, runs from below my right ear down and then across the base of my neck, sort of a large backward "L" with a rounded corner. He didn't take each node out individually, if I remember correctly, there were seven specimens that were analyzed by the lab, each containg maybe 10 nodes. The nodes in your neck are sort of lined up in rows and he took out each row in its entirety.

    Like you, I was very apprehensive going into the surgery, but was pleasantly surprised afterward by the short hospital stay, the lack of pain and the quick recovery. I hope this will also be the case with you!

    Alan

    PS I also had a node biopsied, which is how they diagnosed me. I had more pain following the biopsy then I did following the main surgery. I don't understand it, but that's how it was.
  • amorriso
    amorriso Member Posts: 185
    #5
    ldow said:

    Spread to my lymph nodes
    This is the first time I have been on this site and i'm really hoping it helps.

    I found out I had thyroid cancer in 2005 and had a total thyroidectomy in 2006. I had the radioactive iodine treatment to kill anything that was left and also had a scan which was good. I have since had 2 more scans and several ultrasounds which up until my last one in October were all good. They found a lymph node they were concerned about and did a biopsy which was awful. It is cancer and they set my referral for surgery as urgent. Not sure how to take that. I am really scared. I read a few stories like mine and they are making a little more nervous about my own situation. They said they are going to take all the lymph nodes out on the right side of my neck. This is just great timing.....being very sarcastic. Not a great year for me except that I met and married a great man and my children are healthy.

    Any advice would be greatly appreciated.

    Linda

    nodes
    Hi - I too had to have nodes removed after a PET scan showed several questionable ones. My surgeon did a bilateral neck dissection - he took about 25 nodes from each side of my neck. For me - 7 came back positive - all on the right side.. They should have been removed during when my thyroid was taken, but that surgeon wasnt very good.


    Though a big surgery - I was home in a few days - I opted to remain in hospital because I am single and wanted to make sure I could care for myself once home. Very little pain - more stiff neck and shoulders. I recovered very fast once home - I was driving (carefully) after a week, and could swim again within two weeks. My neck is still numb in places, that may never go away, its annoying but I've learned to live with it. The scar is hardly noticable - and it runs from one ear across my throat and up to the other ear. Most people dont even see it and I never cover or hide it.

    I had a seconde round of RAI about 2 months after the surgery, and currently I am cancer free(1 and half years clear)

    Stay positive and focus on keeping healthy and well.
  • sunnyaz
    sunnyaz Member Posts: 582
    #6
    ldow said:

    Spread to my lymph nodes
    This is the first time I have been on this site and i'm really hoping it helps.

    I found out I had thyroid cancer in 2005 and had a total thyroidectomy in 2006. I had the radioactive iodine treatment to kill anything that was left and also had a scan which was good. I have since had 2 more scans and several ultrasounds which up until my last one in October were all good. They found a lymph node they were concerned about and did a biopsy which was awful. It is cancer and they set my referral for surgery as urgent. Not sure how to take that. I am really scared. I read a few stories like mine and they are making a little more nervous about my own situation. They said they are going to take all the lymph nodes out on the right side of my neck. This is just great timing.....being very sarcastic. Not a great year for me except that I met and married a great man and my children are healthy.

    Any advice would be greatly appreciated.

    Linda

    Hi Linda
    Welcome to the boards. I too had metastasis to my lymph nodes. About six months after my Thyroidectomy they discovered some nodes. Unfortunately the surgeon did not get the targeted nodes the first time so I had to have a second surgery and another round of RAI. I have been cleared of cancer for almost two years now. My surgeries were very simple and I was home the following day. Also a bit of a sore throat but feeling great for the most part. The worst part was not having my coffee and anything to eat the mornings of my surgery. I was driving a week later and back to work. Went swimming and down the big water slides too.

    Think positive thoughts and you will get through this. I know it is scary, especially the fear of the unknown. Hang in there.

    Blessings,
    Julie-SunnyAZ
  • KimCos
    KimCos Member Posts: 2
    #7
    sunnyaz said:

    Hi Linda
    Welcome to the boards. I too had metastasis to my lymph nodes. About six months after my Thyroidectomy they discovered some nodes. Unfortunately the surgeon did not get the targeted nodes the first time so I had to have a second surgery and another round of RAI. I have been cleared of cancer for almost two years now. My surgeries were very simple and I was home the following day. Also a bit of a sore throat but feeling great for the most part. The worst part was not having my coffee and anything to eat the mornings of my surgery. I was driving a week later and back to work. Went swimming and down the big water slides too.

    Think positive thoughts and you will get through this. I know it is scary, especially the fear of the unknown. Hang in there.

    Blessings,
    Julie-SunnyAZ

    Sunnyaz
    I have the same doctor as you. He is wonderful!

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