Have any of you had a TT but left in a few nodes with ptc, then did RAI ?

MarinMark
MarinMark Member Posts: 148
in Thyroid Cancer #1
How important is it to remove all possible lymph nodes on the neck sides if they might have PTC ? Can one get i131 treatment then later remove any lymph nodes ?

Or does one not so 131 until all nodes are removed ?

Comments

  • amorriso
    amorriso Member Posts: 185
    #2
    My story
    Hi there. Here's my story - it may help you decide what to do. Septemeber 2010 I had a complete TT and they took out 3 lymph nodes. Others should have been removed, but my surgeon was uncomfortable with their location.

    Did RAI in November 2010. Was told that would take care of things. WRONG!!! In January I noticed increased swelling and tenderness in my neck. I went to a new surgeon who immediately sent me for a PET scan and warned me that from what he felt I was going to need a bilateral neck dissection quickly.

    PET confirmed his diagnosis. In March I did a the second surgery - massive 6 - 7 hours - 50 lymph nodes removed. 7 were positive. I used a different surgeon - he was angry that I had not been referred to him the first time a round - he would have removed all the nodes much sooner. And it would have been an easier surgery - he said it was a very difficult one for him...and he's done this for many years.

    I did a second RAI in May. At the moment things look good, but by not having those nodes taken out earlier I could have further metastisis.

    If I had known more the first time, I would have had the nodes out right after the first surgery.

    Thats my story.....Hope it helps in your decision.

    Andrea
  • sunnyaz
    sunnyaz Member Posts: 582
    #3
    amorriso said:

    My story
    Hi there. Here's my story - it may help you decide what to do. Septemeber 2010 I had a complete TT and they took out 3 lymph nodes. Others should have been removed, but my surgeon was uncomfortable with their location.

    Did RAI in November 2010. Was told that would take care of things. WRONG!!! In January I noticed increased swelling and tenderness in my neck. I went to a new surgeon who immediately sent me for a PET scan and warned me that from what he felt I was going to need a bilateral neck dissection quickly.

    PET confirmed his diagnosis. In March I did a the second surgery - massive 6 - 7 hours - 50 lymph nodes removed. 7 were positive. I used a different surgeon - he was angry that I had not been referred to him the first time a round - he would have removed all the nodes much sooner. And it would have been an easier surgery - he said it was a very difficult one for him...and he's done this for many years.

    I did a second RAI in May. At the moment things look good, but by not having those nodes taken out earlier I could have further metastisis.

    If I had known more the first time, I would have had the nodes out right after the first surgery.

    Thats my story.....Hope it helps in your decision.

    Andrea

    I Agree with Andrea
    I know it's hard to decide whether to go under the knife again and it would be easier to take the I-131 and have it be gone. Unfortunately, it's not that easy. As I have said in other posts, the nodes will not disappear with RAI. This is just a fact. The sad truth is that if you have RAI without removing the nodes you will end up back in surgery and having another RAI. It's like cleaning the floor before you dust. You end up having to clean the floor again because the dust falls back on the floor. I know this isn't what you want to hear.
    Best Wishes,
    Julie-SunnyAZ
  • MarinMark
    MarinMark Member Posts: 148
    #4
    sunnyaz said:

    I Agree with Andrea
    I know it's hard to decide whether to go under the knife again and it would be easier to take the I-131 and have it be gone. Unfortunately, it's not that easy. As I have said in other posts, the nodes will not disappear with RAI. This is just a fact. The sad truth is that if you have RAI without removing the nodes you will end up back in surgery and having another RAI. It's like cleaning the floor before you dust. You end up having to clean the floor again because the dust falls back on the floor. I know this isn't what you want to hear.
    Best Wishes,
    Julie-SunnyAZ

    Yeah, not a wonderful thing
    Yeah, not a wonderful thing to hear... but still I wonder if the success stories are simply not chiming in. Also wonder if one rai is better to have before any further surgery. Wouldn't want to go through nodes being removed to find out it wasn't a cure anyway. Am I thinking wrong ?
  • sunnyaz
    sunnyaz Member Posts: 582
    #5
    MarinMark said:

    Yeah, not a wonderful thing
    Yeah, not a wonderful thing to hear... but still I wonder if the success stories are simply not chiming in. Also wonder if one rai is better to have before any further surgery. Wouldn't want to go through nodes being removed to find out it wasn't a cure anyway. Am I thinking wrong ?

    Need to remove the nodes and then do RAI to kill the remaining microscopic cells. This is the best course of treatment to try to prevent metastasis.
    Blessings,
    Julie-SunnyAZ
  • MarinMark
    MarinMark Member Posts: 148
    #6
    sunnyaz said:

    Need to remove the nodes and then do RAI to kill the remaining microscopic cells. This is the best course of treatment to try to prevent metastasis.
    Blessings,
    Julie-SunnyAZ

    But how ?
    If nodes look normal on ultrasound and one cannot feel any nodes in the neck, you still get them removed ? The cancer can be elsewhere so what good is the surgery overall ? It not a cure.
  • amorriso
    amorriso Member Posts: 185
    #7
    MarinMark said:

    But how ?
    If nodes look normal on ultrasound and one cannot feel any nodes in the neck, you still get them removed ? The cancer can be elsewhere so what good is the surgery overall ? It not a cure.

    Nodes
    A few questions for you.....when you had your TT done were there any at all nodes taken out? Did the doctor have any suspicions that it even might have spread?

    If any other lymph nodes were involved at the time of your TT, then there is the definate possiblity that it may have gone to others. This is what my doctor said - if even one node is involved, then there is a strong possibility that it has gone to others.

    It took several months before the affected ones in my neck could be felt. Your best bet is the PET scan. If you are newly diagnosed, and get everything taken care of fairly quickly - and yes - that means another surgery if need be, the chances it has spread beyond is very low.

    The RAI will target cancer cells in other parts of your body. It was explained to me that because the cancer cells originated in the thyroid - its still a thyroid cancer cell no matter where it travels. And they would be receptive to the RAI therapy.

    What exactly did your ultrasounds show?
  • MarinMark
    MarinMark Member Posts: 148
    #8
    amorriso said:

    Nodes
    A few questions for you.....when you had your TT done were there any at all nodes taken out? Did the doctor have any suspicions that it even might have spread?

    If any other lymph nodes were involved at the time of your TT, then there is the definate possiblity that it may have gone to others. This is what my doctor said - if even one node is involved, then there is a strong possibility that it has gone to others.

    It took several months before the affected ones in my neck could be felt. Your best bet is the PET scan. If you are newly diagnosed, and get everything taken care of fairly quickly - and yes - that means another surgery if need be, the chances it has spread beyond is very low.

    The RAI will target cancer cells in other parts of your body. It was explained to me that because the cancer cells originated in the thyroid - its still a thyroid cancer cell no matter where it travels. And they would be receptive to the RAI therapy.

    What exactly did your ultrasounds show?

    Surgery and ultrasounds
    Thanks, ammorriso. good reply.

    Okay, at surgery there was ptc on both right and left thyroid glands with no invasions in the muscle. The lymph glands in the center (? below the thyroid) looked completely normal but the microscopic pathology showed ptc except for two lymph normal nodes. The two ultrasounds spaced apart by six weeks, one before surgery and one after, looked fine except for maybe one node low in the neck where it was 7 mm. The doctor who read the studies recommended repeating it in four months because it was so small and unchanged. Yeah, right.

    I was told by a radiologist that the pet scan with sugar cannot be done until after rai treatment and there was no reliable study now which can look inside the nodes, and ptc might not even show up on pet scans.
  • amorriso
    amorriso Member Posts: 185
    #9
    MarinMark said:

    Surgery and ultrasounds
    Thanks, ammorriso. good reply.

    Okay, at surgery there was ptc on both right and left thyroid glands with no invasions in the muscle. The lymph glands in the center (? below the thyroid) looked completely normal but the microscopic pathology showed ptc except for two lymph normal nodes. The two ultrasounds spaced apart by six weeks, one before surgery and one after, looked fine except for maybe one node low in the neck where it was 7 mm. The doctor who read the studies recommended repeating it in four months because it was so small and unchanged. Yeah, right.

    I was told by a radiologist that the pet scan with sugar cannot be done until after rai treatment and there was no reliable study now which can look inside the nodes, and ptc might not even show up on pet scans.

    Hmmmmmm
    I think you need a second or third opinion for other doctors. I had the PET scan and it did show the problems with additional lymph nodes. Any way you can talk to a PET scan person to get their advice? Mine was really good - she explained at lot of things that the doctors wouldnt have done.

    Maybe look into alcohol ablation for the questionalbe nodes? I dont know much about it, but would consider it if I had any further reoccurences.

    Do you ever feel like you're on the way to getting a medical degree yet? The amount of things we need to figure out surely qualifies us for something!

    Cheers

    andrea
  • MarinMark
    MarinMark Member Posts: 148
    #10
    amorriso said:

    Hmmmmmm
    I think you need a second or third opinion for other doctors. I had the PET scan and it did show the problems with additional lymph nodes. Any way you can talk to a PET scan person to get their advice? Mine was really good - she explained at lot of things that the doctors wouldnt have done.

    Maybe look into alcohol ablation for the questionalbe nodes? I dont know much about it, but would consider it if I had any further reoccurences.

    Do you ever feel like you're on the way to getting a medical degree yet? The amount of things we need to figure out surely qualifies us for something!

    Cheers

    andrea

    I have gotten like four other opinions. They seemed to say no other studies can show the inside of the nodes and just go ahead with the first round of rai. All the neck nodes seem to be 3 to 5 mils each except for one which is slightly larger. Is there good in removing just one ? What makes any of you have neck nodes removed ? Cause they are enlarged ? Were they removed just because of having ptc ?

    Amorriso, did you get that PET scan after rai or before you ever had rai ?
  • amorriso
    amorriso Member Posts: 185
    #11
    MarinMark said:

    I have gotten like four other opinions. They seemed to say no other studies can show the inside of the nodes and just go ahead with the first round of rai. All the neck nodes seem to be 3 to 5 mils each except for one which is slightly larger. Is there good in removing just one ? What makes any of you have neck nodes removed ? Cause they are enlarged ? Were they removed just because of having ptc ?

    Amorriso, did you get that PET scan after rai or before you ever had rai ?

    PET
    Hi. I had my TT, then a round of RAI. Even in my first follow up from surgery I was told there were some nodes that did not look good, but the surgeon just didnt take them out. They thought they RAI would take care of them. I was still pretty new at the whole cancer thing at this point.

    Less than 3 months after my RAI,my lymph nodes in my neck started to swell and were quite painful.Oddly enough it was because of a toothache...but it probably saved me. Back to the doctor, who felt my neck and immediately said....SURGERY!!!! He did want to get a thyroid scan in first, but since things were too booked up suggested a PET scan.

    I had the PET scan, and sat down to review the results with the oncology department, and they said no question, I needed a bilateral neck dissection...and probably should have had it at the first surgery. And would need another RAI. They could tell from the PET that there was metastisis - I dont know how they do it , but they could. The nice thing was that they could also know it had not spread anywhere else. I will do another one later this year as part of my own follow up.

    I brought the CD of the PET, all the reports and went to a recommended surgeon at another hospital. He reviewed everything and had me booked within a week - He would NOT let me wait.

    I had the second RAI in May, and so far everything looks really really good. My last ultrasound of my neck was clear - the doctors and the ultrasound tech were both quite pleased.

    I always ask the ultrasound techs what they think when they do my work. And I listen to the background talk as they do the scans. I find them really helpful. I've actually sat with one or two as they are looking at my scans and ask them to tell me what they are seeing. By the time I see the doctor I kind of know what to expect.

    Your situation seems fairly similar to mine. So....its a tough choice.Surgery or wait.... If you try the RAI first then follow up with the lymph nodes very very carefully. Do your homework, find out what you should look for. Be prepared for surgery if anything changes.

    If I had found my second surgeon earlier, I would have done the second surgery earlier. I still have a fear IT may have spread....You have to weigh the options and make your choice. Not an easy one I know

    Take care
  • MarinMark
    MarinMark Member Posts: 148
    #12
    amorriso said:

    PET
    Hi. I had my TT, then a round of RAI. Even in my first follow up from surgery I was told there were some nodes that did not look good, but the surgeon just didnt take them out. They thought they RAI would take care of them. I was still pretty new at the whole cancer thing at this point.

    Less than 3 months after my RAI,my lymph nodes in my neck started to swell and were quite painful.Oddly enough it was because of a toothache...but it probably saved me. Back to the doctor, who felt my neck and immediately said....SURGERY!!!! He did want to get a thyroid scan in first, but since things were too booked up suggested a PET scan.

    I had the PET scan, and sat down to review the results with the oncology department, and they said no question, I needed a bilateral neck dissection...and probably should have had it at the first surgery. And would need another RAI. They could tell from the PET that there was metastisis - I dont know how they do it , but they could. The nice thing was that they could also know it had not spread anywhere else. I will do another one later this year as part of my own follow up.

    I brought the CD of the PET, all the reports and went to a recommended surgeon at another hospital. He reviewed everything and had me booked within a week - He would NOT let me wait.

    I had the second RAI in May, and so far everything looks really really good. My last ultrasound of my neck was clear - the doctors and the ultrasound tech were both quite pleased.

    I always ask the ultrasound techs what they think when they do my work. And I listen to the background talk as they do the scans. I find them really helpful. I've actually sat with one or two as they are looking at my scans and ask them to tell me what they are seeing. By the time I see the doctor I kind of know what to expect.

    Your situation seems fairly similar to mine. So....its a tough choice.Surgery or wait.... If you try the RAI first then follow up with the lymph nodes very very carefully. Do your homework, find out what you should look for. Be prepared for surgery if anything changes.

    If I had found my second surgeon earlier, I would have done the second surgery earlier. I still have a fear IT may have spread....You have to weigh the options and make your choice. Not an easy one I know

    Take care

    Did you use ultrasound and
    Did you use ultrasound and with ultrasound your nodes looked normal ? I mean, has anyone had normal neck nodes by ultrasound and still had the nodes removed ? If so, they have ptc ?

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