Hurthle Cell Carcinoma

1246715

Comments

  • BellsAngel69
    BellsAngel69 Member Posts: 104

    I'm happy to say I have good news...the thyrogen stimulated PET/CT scan came out clear!!! Now I have a biopsy of the growing lymph node in a few weeks and hopefully that will also come out normal. Does anyone know much about the thyrogen PET test regarding detection of HCC?

    Congrats
    on your scan results. I just had my first thyrogen injection for my PET scan on Wednesday. I have the second tomorrow, then the PET Wednesday, a low-dose of RAI. Thursday I have off, then Friday a total body scan.

    It's awesome your scan was clean. However, I had elevated TSH levels, and my scan was also clean. Now my levels are even higher, thus the impending scans, only six months later. I don't want to crush your hopes, but just because your scan is clean, it doesn't mean you're clean. It usually means if there's something there it's just to small to detect. I have your email addy, I'll send you a message.

    My thoughts and prayers are with you. Keep your head up!
  • persimmony
    persimmony Member Posts: 16

    Congrats
    on your scan results. I just had my first thyrogen injection for my PET scan on Wednesday. I have the second tomorrow, then the PET Wednesday, a low-dose of RAI. Thursday I have off, then Friday a total body scan.

    It's awesome your scan was clean. However, I had elevated TSH levels, and my scan was also clean. Now my levels are even higher, thus the impending scans, only six months later. I don't want to crush your hopes, but just because your scan is clean, it doesn't mean you're clean. It usually means if there's something there it's just to small to detect. I have your email addy, I'll send you a message.

    My thoughts and prayers are with you. Keep your head up!

    BellsAngel69
    Thank you! I'm trying to be both positive and realistic...don't think this type of cancer lets you get your hopes up too high for too long, because there is always another test around the corner and even if it shows nothing suspicious, who knows whether it is accurate or not. But i guess that is how life is for everyone, really - who knows if there might be a fatal car accident around the corner? It helps me to think of it that way sometimes.
    Thanks for sharing your experience, let us know how it goes. So your testing lasts a whole week? I had the injections for two days and then a pet/ct whole body scan on the third day with a low dose radioactive injection. not sure why mine was just 3 days and yours 5. Anyhow, please do keep us updated on your results and how you are doing. I'd love to hear from you via email too. It is helpful to know people who understand HCC from the inside...
  • jadefu
    jadefu Member Posts: 1

    BellsAngel69
    Thank you! I'm trying to be both positive and realistic...don't think this type of cancer lets you get your hopes up too high for too long, because there is always another test around the corner and even if it shows nothing suspicious, who knows whether it is accurate or not. But i guess that is how life is for everyone, really - who knows if there might be a fatal car accident around the corner? It helps me to think of it that way sometimes.
    Thanks for sharing your experience, let us know how it goes. So your testing lasts a whole week? I had the injections for two days and then a pet/ct whole body scan on the third day with a low dose radioactive injection. not sure why mine was just 3 days and yours 5. Anyhow, please do keep us updated on your results and how you are doing. I'd love to hear from you via email too. It is helpful to know people who understand HCC from the inside...

    I just read through all
    I just read through all these comments...
    I was diagnosed in August by surprise when I went in for thyroid surgery by choice. I'd previous had RAI a few years ago because of a hot nodule. In early 2009, a recheck turning up some suspicious cells, so I decided (on docs advice) to just remove it completely rather than keep having FNA every 6-12 months. My surgery was in early August, and all went well.

    Then, the pathology came back, and I got the shock of my life. At 37, my doctor told me that instead of doing this surgery to prevent me from having a cancer risk later in life, I in fact had Hurthle cell cancer, and we wouldn't have found it had I not had surgery until it had grown larger and more dangerous, so I was extremely lucky. It was stage 1, completely contained, but she still wanted to do a round of RAI to be safe.

    So I went back off my replacement hormones, my levels dropped like a rock, and took my i-131 over labor day weekend. I also got sick as a dog when I took it! My endo called me every 3 hours over the holiday weekend to make sure I was staying hydrated as everything I ate went right through me: all I could do was drink fluids. She thinks my tsh was so low that I happened to catch a stomach bug on top of the RAI treatment, ick!

    I made it through, and had my body scan 10 days later, which came back all clear. Since then, we've been working on getting my hormone levels right, and just feeling better. Mentally everything that happened is JUST hitting me in the past month, because it was all so fast.

    I'm so glad to hear from others of you, and so many of you sound so similar to me. I was scared, but put it aside to just deal with the treatment. Now I have the time to really think about all of it. I actually just got off the phone with a social worker who's going to help me with some of the mental recovery. I'm still nervous about things going forward, but try not to dwell.
  • samanjan
    samanjan Member Posts: 40
    jadefu said:

    I just read through all
    I just read through all these comments...
    I was diagnosed in August by surprise when I went in for thyroid surgery by choice. I'd previous had RAI a few years ago because of a hot nodule. In early 2009, a recheck turning up some suspicious cells, so I decided (on docs advice) to just remove it completely rather than keep having FNA every 6-12 months. My surgery was in early August, and all went well.

    Then, the pathology came back, and I got the shock of my life. At 37, my doctor told me that instead of doing this surgery to prevent me from having a cancer risk later in life, I in fact had Hurthle cell cancer, and we wouldn't have found it had I not had surgery until it had grown larger and more dangerous, so I was extremely lucky. It was stage 1, completely contained, but she still wanted to do a round of RAI to be safe.

    So I went back off my replacement hormones, my levels dropped like a rock, and took my i-131 over labor day weekend. I also got sick as a dog when I took it! My endo called me every 3 hours over the holiday weekend to make sure I was staying hydrated as everything I ate went right through me: all I could do was drink fluids. She thinks my tsh was so low that I happened to catch a stomach bug on top of the RAI treatment, ick!

    I made it through, and had my body scan 10 days later, which came back all clear. Since then, we've been working on getting my hormone levels right, and just feeling better. Mentally everything that happened is JUST hitting me in the past month, because it was all so fast.

    I'm so glad to hear from others of you, and so many of you sound so similar to me. I was scared, but put it aside to just deal with the treatment. Now I have the time to really think about all of it. I actually just got off the phone with a social worker who's going to help me with some of the mental recovery. I'm still nervous about things going forward, but try not to dwell.

    jadefu
    Please remember you are young and stage I. While scary, this is something that needs monitoring but requires positivity as well.
    I would think blood work every 3-6 months and possibly ultrasounds of the neck should keep your worries to a minimum.
    Getting the correct level of Synthroid is sometimes tricky, but you will know when you have hit upon the right dose. Too little and you are sluggish. Too much and you feel jittery. Without a thyroid, probably you are on somewhere around 150 mcg. Tweaking or fine tuning is the key. Keep a record if that is helpful.
    I had no problems with RAI 131 and felt so fortunate after having read yours and other blogs.
    We are lucky to have each other to compare notes with.
    Elaine
  • BellsAngel69
    BellsAngel69 Member Posts: 104

    BellsAngel69
    Thank you! I'm trying to be both positive and realistic...don't think this type of cancer lets you get your hopes up too high for too long, because there is always another test around the corner and even if it shows nothing suspicious, who knows whether it is accurate or not. But i guess that is how life is for everyone, really - who knows if there might be a fatal car accident around the corner? It helps me to think of it that way sometimes.
    Thanks for sharing your experience, let us know how it goes. So your testing lasts a whole week? I had the injections for two days and then a pet/ct whole body scan on the third day with a low dose radioactive injection. not sure why mine was just 3 days and yours 5. Anyhow, please do keep us updated on your results and how you are doing. I'd love to hear from you via email too. It is helpful to know people who understand HCC from the inside...

    Hi Christy
    My testing lasted a whole week because I had both a PET scan and the low-dose RAI body scan. Both scans showed a spot on the inner curve of my stomach, and nothing else. So, now I have to see a GI doctor, have a CT scan of my stomach, and an endoscopy. The docs are thinking that it is thyroid related, because otherwise they have no clue why my TSH level is so high, and I'll be facing yet another problem.
  • BellsAngel69
    BellsAngel69 Member Posts: 104

    BellsAngel69
    Thank you! I'm trying to be both positive and realistic...don't think this type of cancer lets you get your hopes up too high for too long, because there is always another test around the corner and even if it shows nothing suspicious, who knows whether it is accurate or not. But i guess that is how life is for everyone, really - who knows if there might be a fatal car accident around the corner? It helps me to think of it that way sometimes.
    Thanks for sharing your experience, let us know how it goes. So your testing lasts a whole week? I had the injections for two days and then a pet/ct whole body scan on the third day with a low dose radioactive injection. not sure why mine was just 3 days and yours 5. Anyhow, please do keep us updated on your results and how you are doing. I'd love to hear from you via email too. It is helpful to know people who understand HCC from the inside...

    Hi Christy
    My testing lasted a whole week because I had both a PET scan and the low-dose RAI body scan. Both scans showed a spot on the inner curve of my stomach, and nothing else. So, now I have to see a GI doctor, have a CT scan of my stomach, and an endoscopy. The docs are thinking that it is thyroid related, because otherwise they have no clue why my TSH level is so high, and I'll be facing yet another problem.
  • persimmony
    persimmony Member Posts: 16

    Hi Christy
    My testing lasted a whole week because I had both a PET scan and the low-dose RAI body scan. Both scans showed a spot on the inner curve of my stomach, and nothing else. So, now I have to see a GI doctor, have a CT scan of my stomach, and an endoscopy. The docs are thinking that it is thyroid related, because otherwise they have no clue why my TSH level is so high, and I'll be facing yet another problem.

    Sorry to hear about the spot they found on your stomach. I guess now you have more clues about why your TSH levels have been so high. Have you found another doctor yet? It doesn't seem like the one you have is taking suspicious test results seriously. That would be really frustrating i can imagine. Let us know how your further tests come out, I'm sure you aren't looking forward to them but hopefully they are catching it early. I'm praying for you.
  • BellsAngel69
    BellsAngel69 Member Posts: 104

    Sorry to hear about the spot they found on your stomach. I guess now you have more clues about why your TSH levels have been so high. Have you found another doctor yet? It doesn't seem like the one you have is taking suspicious test results seriously. That would be really frustrating i can imagine. Let us know how your further tests come out, I'm sure you aren't looking forward to them but hopefully they are catching it early. I'm praying for you.

    Now they're thiinking it's in my liver, not my stomach. I didn't think it was stomach at all, I knew it had to be something else, but wasn't prepared for what he told me. They're still not positive. I need andoscopy to rule out the stomach, then an MRI and liver biopsy. Not gonna be a fun ride. Looking at possible liver dissection. Going to Johns Hopkins. Anyone that might have been through this or any feedback would be appreciated.
  • samanjan
    samanjan Member Posts: 40

    Now they're thiinking it's in my liver, not my stomach. I didn't think it was stomach at all, I knew it had to be something else, but wasn't prepared for what he told me. They're still not positive. I need andoscopy to rule out the stomach, then an MRI and liver biopsy. Not gonna be a fun ride. Looking at possible liver dissection. Going to Johns Hopkins. Anyone that might have been through this or any feedback would be appreciated.

    samanjan
    BellsAngel69
    I found your posts on the other webiste and it made me feel sad that you thought no one was interested.
    The two sites should be combined!
    An endoscopy is a piece of cake. You are twilighted and scoped. The fact is that you awaken feeling so good, you think you have been on a long winter nap when, in fact, it has been but a few minutes. It's called propofol.


    My sister works in a facility that does scopes at both ends.

    The liver biopsy may be a bit more grueling, but I don't have any knowledge of that. I would think that at the very least you are under a local.If you have your choice of the order the tests are performed, try to go for the endoscopy first. That could save picking at your liver.
    Go-go-go to Johns Hopkins:)
  • BellsAngel69
    BellsAngel69 Member Posts: 104
    samanjan said:

    samanjan
    BellsAngel69
    I found your posts on the other webiste and it made me feel sad that you thought no one was interested.
    The two sites should be combined!
    An endoscopy is a piece of cake. You are twilighted and scoped. The fact is that you awaken feeling so good, you think you have been on a long winter nap when, in fact, it has been but a few minutes. It's called propofol.


    My sister works in a facility that does scopes at both ends.

    The liver biopsy may be a bit more grueling, but I don't have any knowledge of that. I would think that at the very least you are under a local.If you have your choice of the order the tests are performed, try to go for the endoscopy first. That could save picking at your liver.
    Go-go-go to Johns Hopkins:)

    Got all my tests scheduled
    the MRI and liver biopsy will be done locally, but had to wait till mid-March to get into JOhns Hopkins. I will see Dr. Douglass Ball, an endocrinologist and oncologist. If anyone can sort this out, I have faith John's Hopkins will.
  • samanjan
    samanjan Member Posts: 40

    Got all my tests scheduled
    the MRI and liver biopsy will be done locally, but had to wait till mid-March to get into JOhns Hopkins. I will see Dr. Douglass Ball, an endocrinologist and oncologist. If anyone can sort this out, I have faith John's Hopkins will.

    BellsAngel69
    Go Girl!
    I'll be there in March as well.
    What is the date of your visit?
    Elaine
  • BellsAngel69
    BellsAngel69 Member Posts: 104
    samanjan said:

    BellsAngel69
    Go Girl!
    I'll be there in March as well.
    What is the date of your visit?
    Elaine

    samajan
    By now you know I'll be there the same week as you, so a meeting is definite!!! I'm so excited to meet my new doctors, and you! Thanks for all your support and great advice. You have been my saving gract through this!!
  • samanjan
    samanjan Member Posts: 40

    samajan
    By now you know I'll be there the same week as you, so a meeting is definite!!! I'm so excited to meet my new doctors, and you! Thanks for all your support and great advice. You have been my saving gract through this!!

    samanjan
    That was such a sweet thing to say. It almost made me cry. I am glad I could have helped in some small way.
    I can't wait to meet you either!
  • BellsAngel69
    BellsAngel69 Member Posts: 104
    samanjan said:

    samanjan
    That was such a sweet thing to say. It almost made me cry. I am glad I could have helped in some small way.
    I can't wait to meet you either!

    Have my liver biopsy MOnday
    Yeah, looks like there's definitely something there. I have a liver biopsy Monday. I was keeping positive, thinking they'd find something else, and it wasn't my liver, but it looks like it is. I guess I was in a kind of denial.

    All I can do is move forward from here. I just pray JOhns Hopkins can help me get this sorted out and give me my life back. Something is making this come back again and again, and they need to find out what it is. I have faith, and I will continue to pray.

    Hugs, Patti
  • samanjan
    samanjan Member Posts: 40

    Have my liver biopsy MOnday
    Yeah, looks like there's definitely something there. I have a liver biopsy Monday. I was keeping positive, thinking they'd find something else, and it wasn't my liver, but it looks like it is. I guess I was in a kind of denial.

    All I can do is move forward from here. I just pray JOhns Hopkins can help me get this sorted out and give me my life back. Something is making this come back again and again, and they need to find out what it is. I have faith, and I will continue to pray.

    Hugs, Patti

    BellsAngel69
    We are all praying for a good outcome today for you.
    Elaine
  • BellsAngel69
    BellsAngel69 Member Posts: 104
    samanjan said:

    BellsAngel69
    We are all praying for a good outcome today for you.
    Elaine

    It's in my liver
    The FNA biopsy was negative, but the pathologist knew enough to slice the sample and stain it, and low and behold, the stain showed hurthle cells. Metastasis to the liver is very very rare, 0.5%. I've been researching my **** off and have foud five measly "articles", if you can call them that. There's nothing out there it's so rare. My endocrinologist doesn't want me to wait, has referred me to a liver surgeon, and it looks like they are going to take out the left lobe of my liver. On the good side, the lesion was much smaller than the stupid tech who took the CT scan first reported. He/she said it was 6 x 9 cm, which is pretty big, and it's much smaller.

    I'm still heading to Johns Hopkins post surgery for a follow-up and meeting with a new doctor to take over my case.

    In researching, I found the hurthle cell cancer of the thyroid is very rare, but the most likely kind to present with a metastasis. 34% of people diagnosed with HCC are likely to have a reocurrence sometime in the future. And once you have one reocurrence you'll probably have more.

    So, is it still the "Best kind of cancer to get?" I want to beat every stupid doctor who says that!
  • samanjan
    samanjan Member Posts: 40

    It's in my liver
    The FNA biopsy was negative, but the pathologist knew enough to slice the sample and stain it, and low and behold, the stain showed hurthle cells. Metastasis to the liver is very very rare, 0.5%. I've been researching my **** off and have foud five measly "articles", if you can call them that. There's nothing out there it's so rare. My endocrinologist doesn't want me to wait, has referred me to a liver surgeon, and it looks like they are going to take out the left lobe of my liver. On the good side, the lesion was much smaller than the stupid tech who took the CT scan first reported. He/she said it was 6 x 9 cm, which is pretty big, and it's much smaller.

    I'm still heading to Johns Hopkins post surgery for a follow-up and meeting with a new doctor to take over my case.

    In researching, I found the hurthle cell cancer of the thyroid is very rare, but the most likely kind to present with a metastasis. 34% of people diagnosed with HCC are likely to have a reocurrence sometime in the future. And once you have one reocurrence you'll probably have more.

    So, is it still the "Best kind of cancer to get?" I want to beat every stupid doctor who says that!

    best cancer
    The best cancer to get is NO cancer.
    Simple thyroid cancer is quite different from HCC. Although originally a sub-type of follicular cancer, as time went by, it became it's own two-headed monster!
    By it's very nature, it is recurrent cancer. I think we all need to BOLO at each and every turn with this type.
    Our hopes and prayers are with you, Patti.
  • loispol1
    loispol1 Member Posts: 84
    samanjan said:

    best cancer
    The best cancer to get is NO cancer.
    Simple thyroid cancer is quite different from HCC. Although originally a sub-type of follicular cancer, as time went by, it became it's own two-headed monster!
    By it's very nature, it is recurrent cancer. I think we all need to BOLO at each and every turn with this type.
    Our hopes and prayers are with you, Patti.

    Hi - Hurthle Cells?
    I am so sorry you all are goig through this. I can't even imagine your situations. I am busy researching over and over again trying to decide where to go and who to do my surgery. I have seen several surgeons and had a pathology result in the FNA (have trachitis now from that) of a predominence of Hurthle cells in one of the three nodules they examined. Yesterday I was "fired" from a major cancer center here in Florida for asking too many questions. I have severe and extensive allergies which they were not addressing or entering into the electronic medical filing system. They did not return a call in three weeks prior to FNA which i went to by myself (2 1/2 hr drive each way),and i have had three trips so far. Now,although total thoriodectomy is recommended, I now have no surgeon because they have identified me as a problem patient (think of Elaine in Seinfeld episode). The Cancer center experience was so cold, abusive and truly horrible. i am scared, please help!I have had thyroid prob's since 1993 and I have multinoduar goiter and hasimotos DX. Should i just have the surgery here close to home and forget the big cancer centers?

    I need a compassionate & expert surgeon to get through all of this.
  • loispol1
    loispol1 Member Posts: 84

    It's in my liver
    The FNA biopsy was negative, but the pathologist knew enough to slice the sample and stain it, and low and behold, the stain showed hurthle cells. Metastasis to the liver is very very rare, 0.5%. I've been researching my **** off and have foud five measly "articles", if you can call them that. There's nothing out there it's so rare. My endocrinologist doesn't want me to wait, has referred me to a liver surgeon, and it looks like they are going to take out the left lobe of my liver. On the good side, the lesion was much smaller than the stupid tech who took the CT scan first reported. He/she said it was 6 x 9 cm, which is pretty big, and it's much smaller.

    I'm still heading to Johns Hopkins post surgery for a follow-up and meeting with a new doctor to take over my case.

    In researching, I found the hurthle cell cancer of the thyroid is very rare, but the most likely kind to present with a metastasis. 34% of people diagnosed with HCC are likely to have a reocurrence sometime in the future. And once you have one reocurrence you'll probably have more.

    So, is it still the "Best kind of cancer to get?" I want to beat every stupid doctor who says that!

    Wow, are you okay now?
    I had a lesion found on my liver about a year ago and it has grown. I also have other growths/polyps "things that have been idenified for surgery on my cervix and sinuses but i didn't have the surgery done due to my serious/extensive allergic reactions to medications. I am very afraid of the anesethsia and need appripriate medical care. I am thinking of traveling for surgery and hopefully excellent care the first time around for my first surgery -total thyroidectomy. Any suggestions where i can best be treated? i do not know yet if i have Hurthle cell cancer or a Hurthle cell beign lesion. I had a predominance of hurthle cells on the FNA biopsy in one of three samples. I have not been feeling well this past year and no doctor can explain my horrible rash which i have had for over a year. It is terrible. Help?
  • sfl67
    sfl67 Member Posts: 55
    loispol1 said:

    Hi - Hurthle Cells?
    I am so sorry you all are goig through this. I can't even imagine your situations. I am busy researching over and over again trying to decide where to go and who to do my surgery. I have seen several surgeons and had a pathology result in the FNA (have trachitis now from that) of a predominence of Hurthle cells in one of the three nodules they examined. Yesterday I was "fired" from a major cancer center here in Florida for asking too many questions. I have severe and extensive allergies which they were not addressing or entering into the electronic medical filing system. They did not return a call in three weeks prior to FNA which i went to by myself (2 1/2 hr drive each way),and i have had three trips so far. Now,although total thoriodectomy is recommended, I now have no surgeon because they have identified me as a problem patient (think of Elaine in Seinfeld episode). The Cancer center experience was so cold, abusive and truly horrible. i am scared, please help!I have had thyroid prob's since 1993 and I have multinoduar goiter and hasimotos DX. Should i just have the surgery here close to home and forget the big cancer centers?

    I need a compassionate & expert surgeon to get through all of this.

    loispol1
    Hi,
    I don't know where in Florida the Mayo Clinic is located, but according to their web site they have a branch in Florida. I have referred to their site often since I also have a Hurthle Cell diagnosis. They seem to be specialists in treating this form of cancer. I had a total thyroidectomy in July 09 followed by RAI-131 in September.

    I wish you well and hope you find a caring group of doctors very soon.