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Hurthle Cell Carcinoma

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  • sunnyaz
    sunnyaz Member Posts: 582
    dunatuna said:

    Had it
    Yes, I was diagnosed and had surgery in July 2001. I've had trouble taking levoxyl (thyroid replacement) because it makes my heart race (180+ beats per minute), and I'm pretty miserable taking it. I also switched from Prozac to Zoloft which made my TSH jump from 1.7 to 43. Anyone else have that experience? I'm back on Prozac now and will re-check in 8 weeks to see if there's any difference. What a miserable diagnosis. If I hear one mor health professional say how "lucky" I am to have this instead of a "more serious" diagnosis, I think I'll punch him/her. There's nothing "lucky" about this. Also, my father was diagnosed with thyroid cancer (medullary), and we were both exposed to radiation when he was enlisted in the Army in the 1950's. Anyone else have that experience? It was in the desert near Phoenix, AZ.

    That's odd.....
    That's odd.... my dad was in the military here in Tucson during the fifties. He died of cancer about five years ago. We don't know where it originate however, it metastasized everywhere before the doctors finally figured out it was cancer. We opted out of the autopsy. I was diagnosed with Papillary Thyroid cancer in 2009, only five years after he died. My mom has had MS for more than 44 years and had it when she was pregnant with me but we didn't know it at the time. I was thirteen when they finally gave her a definitive diagnosis. No MRI's then so it was a process of elimination and they didn't know much about it back then. I do know that we were all exposed to TCE from Hughes Aircraft (now called Raytheon Missile Systems) dumping toxic chemicals in the desert south of Tucson. My Grandmother and my Grandfather both died of cancer. I was born in 1967. That was the year my Grandfather died and my Grandmother died about thirteen years ago from, get this; cancer that started in her eye ball!

    I agree that there is nothing lucky about Thyroid cancer. I would give anything to have a normal functioning thyroid again. NOBODY understands how we feel except those without a Thyroid. I am so different than I used to be. I feel like just dragging my _ss to work every day is such a chore. I hate it. I just want to retire but I have at least twenty years to go. Wish I could win the lottery and become a Philanthropist. I could and would help so many people.

    By the way, my doctor won't let me take the generic form of T4. He insists that I take name brand Synthroid. He said that the generic forms vary too much in dosage. I agree with him and have been paying the extra money every month to be on the brand name. I haven't had fluctuations in my TSH levels. I haven't tried any of the Antidepressants however. I tried them in the year before my diagnosis and they just wacked me out and I had weird allergic reactions to them. My doctor and counselor said I was "Bi-Polar". Truth was; it one of the symptoms of hypothyroidism due to the cancer.

    Blessings,
    Julie-SunnyAZ
  • missythyca
    missythyca Member Posts: 2
    LBlackman said:

    hurthle cell
    I hope your surgery goes well. My cousin was diagnosed in Houston with thyroid cancer, hers is not hurthle cell like mine is. I haven't found very many people with hurthle cell cancer at all. I was 37 when I was diagnosed and according to my Dr. that is very rare for a young female to be diagnosed with that. Now I am seeing more and more young females diagnosed with it. I am 42 now. I am preparing for my fifth scan. The others have come back clean, but I have never been on any food restrictions prior to my scans and I was doing the atkins diet, which has alot of high iodine foods and the nurse told me that may have concealed some cancer growths. I am doing a lighter form of the low iodine diet on my own so we will see how this scan turns out.
    My cousin lives in Houston and said the medical care there is wonderful. They are very knowledgeable and informative. I think with hurthle cell, since it is so rare, they are still learning as how best to treat it. Are you having both sides of your thyroid removed? Have they diagnosed hurthle cell cancer? There is a non-cancerous hurthle cell. If you are on facebook, there is a page called thyroid 411. There is alot of support there also. If you have any questions, please post them. I didn't know about this website when I was first diagnosed but am very thankful for it now.
    Blessings
    Lynne

    Lynne B ( response to my post)
    I underwent a R thyroid lobectomy on the 18th as planned.
    I am a nurse so I've been diving into all the medical research as much as I can, but I tell you what, after reading everyone else's stories, it's nice to know how much you are all finding out about your conditions, reading and researching, and being active in your health care.

    She did take a close by lymph node and sent it for frozen section during, she said it looked "juicy".
    Results on that were benign.
    I have to wait 5 business days to see if the Hurthle cell tumor is benign or malignant. my FNB said "suspicious for..."

    So I'm in my waiting game stage.

    My tumor was 2.8cm, oblong like an egg. From the 1st US it measured 2.6cm but they said dont consider it growly unless it was more than 30% increase. on the 2nd US before the surgery, they found an additional tumor but it was miniscule in size, like .4cm

    My 1st endo i chose said to go have a TT but when i went to MD Anderson, she recommended just a lobectomy due to my age, I'm 38 and the size of tumor. She said if it is malignant then we will just do another surgery to remove the other half.
    i agreed with her rationale. #1 I'm young, #2 no tumor in other lobe, so if benign then i have my thyroid to make my own hormone. #3 if 2nd surgery is due because of malignancy then it's not that big of a rush, 3 months, she said. again because there is not a tumor there, and she wants me fully healed, no inflammation in the way of her seeing what she needs to see in there.

    I was scheduled to be there just 23hrs after the surgery, they kept me a few more hours.... but then i started having mucus come up when i coughed. like a chest cold, very bad, yucky yellow phlegm with a little bit of blood. so i'm guessing it was just my dumb luck that i get a cold after having surgery, coughing is not fun.

    I am mentally in a better place now that it is out, before it was driving me nuts, just waiting.

    MD Anderson, wow, what a phenominal place, I loved everyone there.

    thanks for the info on the FB page.
  • ashes79
    ashes79 Member Posts: 5
    Lola48 said:

    Hi Chris, I can totally relate to what you are saying.
    Sometimes a shrink can be helpful...

    I have that same feeling as far as the cancer spreading. I do have anti-anxiety meds to take as needed and an antidepressant as well. Sometimes if things are really overwhelming it helps to have a something to take. It's called adtavan (sp?)

    Did they take any lymph nodes during your surgery? They did not with me, though I wish they would have. Even before I knew the symptoms of Hurhtle cancer, I was having some major issues. Have you had trouble wiht your teeth? (pain, aching, cavities)

    Does your throat hurt when you inhale and exhale? I think you should ask your doctor about the anxiety. Did you have high blood pressure before the thyroid meds? What does your doctor say?

    Do you feel like everything in your life changed, when your thyroid went on the rampage??

    I know this reply is really
    I know this reply is really really late, but you are the first person I have seenthat said something about my teeth. After my treatment I had to have three wisdom teeth pulled, two of my back teeth chipped, and two cavities. My Dr and dentist said it's not possible that it had anything to do with the procedures or the cancer. After my second surgery my calcium levels were low and I had to chew Tums for like a month. I was told if my lip beins to chip to go strait to the emergency room and tell them i need a calcium injection because I could die. Everyone thinks I am crazy when I tell them it had to do with either the cancer or the procedures. If you get this I would love to know where you are in your treatment and how you are doing.

    God Bless,

    Ashley
  • kristi0
    kristi0 Member Posts: 3
    Metastasis of HCC
    Good morning, all. I'm new here and we recently got the diagnosis that my mom (age 57) has Stage IV HCC. It's currently metastasized to her lung and bones in her back. She underwent back surgery 3 weeks ago and that's when they found it. We had originally thought it was early osteoporosis but were shocked to hear the C word. Later, a fine needle biopsy was done on her thyroid when a scan showed 3 nodules. One of the three was cancerous and was determined to be HCC. She is schedule for a complete thyroidectomy on Friday (15th) and will undergo radiation for her back as well in the coming weeks to treat whatever remains of the cancer there. She'll begin radioiodine treatment in 6 weeks with the hopes that it takes. We're all trying to be very optimistic about it all and also realize that the odds aren't in her favor for it working. Heck - the odds were against her to get this particular form of cancer to begin with, so why not be in the minority for the RAI treatment to work, right? They have yet to do an MRI on her brain but that is scheduled for sometime in the next couple weeks as well to see if it's moved there at all. We're in IA so Mayo isn't far from us, if we get to the point of needing additional help. Any advice/support is much appreciated.

    Kristin
  • catladysue237
    catladysue237 Member Posts: 25
    ashes79 said:

    I know this reply is really
    I know this reply is really really late, but you are the first person I have seenthat said something about my teeth. After my treatment I had to have three wisdom teeth pulled, two of my back teeth chipped, and two cavities. My Dr and dentist said it's not possible that it had anything to do with the procedures or the cancer. After my second surgery my calcium levels were low and I had to chew Tums for like a month. I was told if my lip beins to chip to go strait to the emergency room and tell them i need a calcium injection because I could die. Everyone thinks I am crazy when I tell them it had to do with either the cancer or the procedures. If you get this I would love to know where you are in your treatment and how you are doing.

    God Bless,

    Ashley

    calcium
    I know where you are coming from. After my second surgery to remove the rest of my thyroid, my calcium crashed. I ended up going to the hosp in an ambulance. It has been over three months and I am still on 6,000 mg a day. That is 10 pills! They still don't have my synthroid right, I go from hyperactive to ridiculously sluggish. I worry what the calcium is doing to my kidneys. Okay, I've ranted enough, but thanks for listening.
  • samanjan
    samanjan Member Posts: 40
    kristi0 said:

    Metastasis of HCC
    Good morning, all. I'm new here and we recently got the diagnosis that my mom (age 57) has Stage IV HCC. It's currently metastasized to her lung and bones in her back. She underwent back surgery 3 weeks ago and that's when they found it. We had originally thought it was early osteoporosis but were shocked to hear the C word. Later, a fine needle biopsy was done on her thyroid when a scan showed 3 nodules. One of the three was cancerous and was determined to be HCC. She is schedule for a complete thyroidectomy on Friday (15th) and will undergo radiation for her back as well in the coming weeks to treat whatever remains of the cancer there. She'll begin radioiodine treatment in 6 weeks with the hopes that it takes. We're all trying to be very optimistic about it all and also realize that the odds aren't in her favor for it working. Heck - the odds were against her to get this particular form of cancer to begin with, so why not be in the minority for the RAI treatment to work, right? They have yet to do an MRI on her brain but that is scheduled for sometime in the next couple weeks as well to see if it's moved there at all. We're in IA so Mayo isn't far from us, if we get to the point of needing additional help. Any advice/support is much appreciated.

    Kristin

    your mom
    Deaar Kristin,
    I was so sorry to hear of the diagnosis of your mother. It was hiding in her back all along then, not her thyroid.
    Yes, this is rare, HCC no question. Can it be beaten...yes possibly. Is there any possible way for you to read her path report and respond. Size of tumor, etc.,
    RAI does not work all that well, but at present, is our only option. It was not that bad and I had a very good outcome. I can readily put myself in your mom's shoes, as I am 58. My stage was III for which I am eternally grateful with no distant metastatic problems.
    My advice is this... radioactive tumors need as little radiation as possible. Certain tests need to be performed, but beware of the incidental (aipports, dentisits, etc.,)
    Please keep me posted and best of luck to all.
    Elaine
  • kristi0
    kristi0 Member Posts: 3
    samanjan said:

    your mom
    Deaar Kristin,
    I was so sorry to hear of the diagnosis of your mother. It was hiding in her back all along then, not her thyroid.
    Yes, this is rare, HCC no question. Can it be beaten...yes possibly. Is there any possible way for you to read her path report and respond. Size of tumor, etc.,
    RAI does not work all that well, but at present, is our only option. It was not that bad and I had a very good outcome. I can readily put myself in your mom's shoes, as I am 58. My stage was III for which I am eternally grateful with no distant metastatic problems.
    My advice is this... radioactive tumors need as little radiation as possible. Certain tests need to be performed, but beware of the incidental (aipports, dentisits, etc.,)
    Please keep me posted and best of luck to all.
    Elaine

    I've actually mentioned this to my mom, that she needs copies of all her path tests and such. She had 3 nodules in her thyroid, only one of which was cancerous. It was 2cm, so not huge or anything. She starts radiation on her back tomorrow. She's to see the dentist ASAP since they'll put her on a bone med that will impact her teeth if she needs work done at the time. Sounds like they're pushing the RAI treatment to 6-8 weeks now. We just want to get the show on the road and see if it's going to work. If not - move on to the next options. Trying to stay positive and make the most of whatever we have.

    Thanks for your response, Elaine.

    Kristin
  • samanjan
    samanjan Member Posts: 40
    kristi0 said:

    I've actually mentioned this to my mom, that she needs copies of all her path tests and such. She had 3 nodules in her thyroid, only one of which was cancerous. It was 2cm, so not huge or anything. She starts radiation on her back tomorrow. She's to see the dentist ASAP since they'll put her on a bone med that will impact her teeth if she needs work done at the time. Sounds like they're pushing the RAI treatment to 6-8 weeks now. We just want to get the show on the road and see if it's going to work. If not - move on to the next options. Trying to stay positive and make the most of whatever we have.

    Thanks for your response, Elaine.

    Kristin

    RAI
    Dear Kristin,
    RAI is preventative medicine which is only 10% effective with HCC. It is used to ablate remnant thyroid cells. In your mother's case this has already happened. Her HCC has already metastasized to lungs and spine. I am reminded of closing the barn door after the horses escaped. My opinion is that RAI has no place at stage IV with known metastatic consequences.
  • samanjan
    samanjan Member Posts: 40
    kristi0 said:

    I've actually mentioned this to my mom, that she needs copies of all her path tests and such. She had 3 nodules in her thyroid, only one of which was cancerous. It was 2cm, so not huge or anything. She starts radiation on her back tomorrow. She's to see the dentist ASAP since they'll put her on a bone med that will impact her teeth if she needs work done at the time. Sounds like they're pushing the RAI treatment to 6-8 weeks now. We just want to get the show on the road and see if it's going to work. If not - move on to the next options. Trying to stay positive and make the most of whatever we have.

    Thanks for your response, Elaine.

    Kristin

    RAI
    Dear Kristin,
    RAI is preventative medicine which is only 10% effective with HCC. It is used to ablate remnant thyroid cells. In your mother's case this had already happened. Her HCC has already metastasized to lungs and spine. I am reminded of closing the barn door after the horses escaped. My opinion is that RAI has no place at stage IV with known metastatic consequences.
  • unknown stalker
    unknown stalker Member Posts: 1
    hurthle cell carcinoma
    Hi,

    I was just told that I have hurthle cell carcinoma, and papillary carcinoma both lobes of my thyroid had both types, I had a complete thyroiectomy on Aug. 1. Has any one out there been told you have more that one type cancer at the same time. I'm in shock.
  • csm2007
    csm2007 Member Posts: 25

    hurthle cell carcinoma
    Hi,

    I was just told that I have hurthle cell carcinoma, and papillary carcinoma both lobes of my thyroid had both types, I had a complete thyroiectomy on Aug. 1. Has any one out there been told you have more that one type cancer at the same time. I'm in shock.

    hurthle cell and papillary tcv
    Yes, I was in shock as well! Def not too many out there of us with multiple kinds at the same time. I was DX in Dec of 2010 with Hurthle cell carcinoma 4.5 cm 33 grams in my left lobe and papillary tall cell 1.1 cm 9 grams in right lobe in January 2011. I had two surgeries; they removed only my left lobe the first surgery then went back in a month later and found the papillary in the right. I have lymph node involvement, and now cervical lymphs are prominent after RAI dose. Still undergoing treatment as my first round of RAI did not work completely. Rising TG and TSH the whole time after surgery and RAI, even as of 2 weeks ago my numbers are still climbing. My Synthroid is still being upped, right now at .125 mcgs. I have spots on my liver and ribcage that are areas of concern. Awaiting Pet and C/T scan that are scheduled soon. Sorry we have to meet under these circumstances but if you have questions that I can answer I'll be glad to! --csm2007
  • bklowe
    bklowe Member Posts: 3
    csm2007 said:

    hurthle cell and papillary tcv
    Yes, I was in shock as well! Def not too many out there of us with multiple kinds at the same time. I was DX in Dec of 2010 with Hurthle cell carcinoma 4.5 cm 33 grams in my left lobe and papillary tall cell 1.1 cm 9 grams in right lobe in January 2011. I had two surgeries; they removed only my left lobe the first surgery then went back in a month later and found the papillary in the right. I have lymph node involvement, and now cervical lymphs are prominent after RAI dose. Still undergoing treatment as my first round of RAI did not work completely. Rising TG and TSH the whole time after surgery and RAI, even as of 2 weeks ago my numbers are still climbing. My Synthroid is still being upped, right now at .125 mcgs. I have spots on my liver and ribcage that are areas of concern. Awaiting Pet and C/T scan that are scheduled soon. Sorry we have to meet under these circumstances but if you have questions that I can answer I'll be glad to! --csm2007

    What now??
    I am Kristin's sister, Kelley. My mom received the phone call that the RAI did not take. It's not that I'm surprised but more that I feel like we are at a loss with what to do next. Has anyone done any clinical studies or trials that have had a positive outcome? I'm willing to look anywhere considering chemo seems to be useless and I'm assuming that is what the doctors are going to want us to do. That is just not good enough and I'm ready to move on. Any info would be great!

    Thanks,
    Kelley
  • bklowe
    bklowe Member Posts: 3
    sojourn said:

    Hi I'm new and feel very alone with the hurthle cell
    Samanjan, Hope this note finds you well,you seem to have alot of knowledge about the hurthle cell. I am so happy to find this web site ,I have tried to find out as much as possable,there is not much out there.
    I'm 46 yr old female with hurthle cell ,had a full neck disection, 39 lympnodes removed found a small spot on lung.just had very strong 1-31 treatment dr. said it did not take & that it had spread to the other side under my coller bone. so Im getting 12 weeks off to see what surgen I will need for my next sugery. I love my doc & surgen . Sorry to dump all this no one seems to get it. (its a good cancer to have, you should feel better now, but you look good.) my surgery was the last week in sept went to work at 3 weeks for 2 weeks then started the tsh & 1-31 treatment hospital sick as a dog,With a smile .
    Thanks for listening
    God bless, Carol

    ??
    Hey, Carol. I was just wondering how things were going for you now? My mom is kind of in the same situation so I am wondering what all you have tried and if anything has worked??
    Thanks!
    Kelley
  • bklowe
    bklowe Member Posts: 3
    danjo2 said:

    Hurthle Cell Carcinoma
    My partner has Hurthle Cell Cancer. 3 years now.
    Iodine treatment did not work. Had three series of it but cancer metastisized to spine and lungs. Within 5 or 6 months after initial surgery, his C3 vertebrae has been totally destroyed. Had metal brace fixed to spine, next came radiation therapy, but brace came loose within 3 months.... Now we were in deep crap!... Found new surgeon in Montreal, which was a godsend. New surgery to fix original brace and add another in the back of the neck. This one held. But cancer already spread to lungs.

    Tried chemo, but that didn/t work either. Next came NEXAVAR!!! This one works!!
    Had the doctors tried that first, we may be in better shape today. At least the Nexavar is controlling the growth and spread of the cancer. Had been on it for a year and a half now. We know the cancer will never be in remission but at least we have more time.

    This medication is hard on the body but if, as by friend did, you can tough out the hard moments, the symptoms diminish with time. Assume it has to do with the body adapting to the meds.

    Not on the intenet often but will check once in a while. Ask your doctors about this medication... was specially designed for aggressive cancers.

    Very expensive, unfortunately, and needs approval from insurance before it is accepted.

    All I can say is had we had this option in the begining we would have a better outlook, but hope that this info can help someone else.

    Remember that Hurthle cell cancer does not take up iodine well, therefore the iodine treatment and even the iodine scans are not very effective. We just had a scan to see if the cancer cells would absorb some of the iodine, (if it did we would have done another treatment of radioactive iodine to burn off those cells) but though we know where the tumors are and can actually feel a large lump on his neck, absolutely nothing showed on the scan!!

    So don't be fooled by scans that show nothing...the only clear way to know if the cancer is still present seems to be blood tests and pet scans.

    Wishing all of you the better luck than we had. Don't be afraid to do research and ask questions.

    long term
    Hey, how are things going for you guys now? My mom is kind of in the same boat and I know we are running out of options. I would be grateful for any help.

    Kelley
  • Mccammon5
    Mccammon5 Member Posts: 2

    hurthle cell carcinoma
    Hi,

    I was just told that I have hurthle cell carcinoma, and papillary carcinoma both lobes of my thyroid had both types, I had a complete thyroiectomy on Aug. 1. Has any one out there been told you have more that one type cancer at the same time. I'm in shock.

    I was told I had hurthle
    I was told I had hurthle cells after my needle biopsy in June of this year. After my surgery (july)I was told it wasn't hurthle but papillary cancer. I have been on the "diet" now for six days. I get my first injection at 9am, my second on Tuesday, and I131 on Wednesday. I'm so new at all this.... I didn't realize that every time I get my numbers checked I have to go back on the diet..... I no love the diet!
    Katherine
  • dolfan
    dolfan Member Posts: 3
    Hurthle Cell Carcinoma
    Hi all,

    I had a goiter which runs in my family on my mom's side. Many aunts, grandma, mom, etc. have all had benign goiters. I was not so lucky. After going to my PCP, then endocrinologist I had FNA and was told inconclusive for cancer so he recommended I see a surgeon. The surgeon did not initially want to remove my entire tyroid since I was only 43. After reading my chart he decided to remove it all. Thank God he did. I had a 4cm Hurthle Cell Carcinoma in my right lobe. I had RA 131 treatment which I was told was to kill off any remaining thyroid cells. I had 100 mlq of RA 131 and stayed in isolation for 3 days because I have little ones (now 6 and 3). I had a scan right after that and everything has been fine. I had my synthroid adjusted once. I have been trying to lose weight and finding it extemely hard...not sure if that is due to lack of thyroid or not?!? When I first found out in Dec 2009 after my surgery I was shocked. 3 days of endless internet research and lots of talking with family and friends and praying. In January 2010 my scan was normal. All of 2010 was fine. In January 2011 I had another scan. This time activity showed in my neck area. Endo advised I wait 6 months and do ultrasound...blood work was fine. 6 months later u/s showed no thyropid tissue BUT 2.5cm and 2.3cm enlarged lymph nodes AND blood work now shows antibodies where it never did before. What does all that mean? I am now thinking maybe I shouldn't be so trusting and patient and maybe go to get a second opinion? I am in FL and will travel for that I don't mind. He advised me to wait 6 months and do another whole body scan but I moved my appt up from March 2012 to January 2012 and now am thinking about going to a local hematology/oncology doctor. What does everybody out there think???
  • sars_mom
    sars_mom Member Posts: 1
    biskie said:

    graceam92 let's talk
    Hi again graceam92. I haven't seen another post from you. I hope you find your way back here. My daughter wants to contact you, but we don't have a way to find you. You can write to me at [email protected]

    Put "From Grace" in the subject so I will recognize you. She just had her thyroid out. We are waiting for the labs to come back to let us know the next steps for treatment. Trying to stay positive and finding fun. Please write.

    19 year old daughter with hurthle cell cancer
    My daughter Sarah, 19 yrs., is probably the same age as your daughter. Sarah was diagnosed with Hurthle cell cancer after developing a fast growing large tumor. We noticed the lump in late April 2011 and the doctor treated her for mono as she was finishing up her first year of college and was having much difficulty with concentration and energy. Just tired all the time. At the end of May when it became apparant the growth was getting larger we visited the ENT doctor. From there, a fine needle biopsy and ultrasound then slides sent to Mayo clinic that revealed Hurthle cells. Sar's first surgery was this past July and cancer was revealed in lab report after tumor examined. Tumor was 3.5 at largest dimension and had grown considerably from the time she had an ultrasound in June until the surgery in July. Sarah went in for 2nd surgery 3 weeks later to remove all of thyroid, then RAI, then synthroid and now cytomel medications. Sarah has had a wonderful attitude through it all but it has been extremely challenging lately trying to get meds to the right level. We go this Thursday for bloodwork after 4 weeks on synthroid and to see if she is clear from cancer. How is your daughter doing currently as it seems as if she may have already been through the medication-leveling to feel good again? Has your daughter remained clear of cancer? It is puzzling for someone so young to have this type of cancer but from what we have heard from various doctors, Sarah's prognosis is better because of her age? Sarah has been treated here in Toledo, Ohio and we have had wonderful doctors that have acted quickly in getting her in for every test/treatment. We have been very fortunate thus far. Hope your daughter has fared well and is heading to college soon. Would be interested in hearing from you.
  • Saritav
    Saritav Member Posts: 9
    dolfan said:

    Hurthle Cell Carcinoma
    Hi all,

    I had a goiter which runs in my family on my mom's side. Many aunts, grandma, mom, etc. have all had benign goiters. I was not so lucky. After going to my PCP, then endocrinologist I had FNA and was told inconclusive for cancer so he recommended I see a surgeon. The surgeon did not initially want to remove my entire tyroid since I was only 43. After reading my chart he decided to remove it all. Thank God he did. I had a 4cm Hurthle Cell Carcinoma in my right lobe. I had RA 131 treatment which I was told was to kill off any remaining thyroid cells. I had 100 mlq of RA 131 and stayed in isolation for 3 days because I have little ones (now 6 and 3). I had a scan right after that and everything has been fine. I had my synthroid adjusted once. I have been trying to lose weight and finding it extemely hard...not sure if that is due to lack of thyroid or not?!? When I first found out in Dec 2009 after my surgery I was shocked. 3 days of endless internet research and lots of talking with family and friends and praying. In January 2010 my scan was normal. All of 2010 was fine. In January 2011 I had another scan. This time activity showed in my neck area. Endo advised I wait 6 months and do ultrasound...blood work was fine. 6 months later u/s showed no thyropid tissue BUT 2.5cm and 2.3cm enlarged lymph nodes AND blood work now shows antibodies where it never did before. What does all that mean? I am now thinking maybe I shouldn't be so trusting and patient and maybe go to get a second opinion? I am in FL and will travel for that I don't mind. He advised me to wait 6 months and do another whole body scan but I moved my appt up from March 2012 to January 2012 and now am thinking about going to a local hematology/oncology doctor. What does everybody out there think???

    Pain
    Did any of you have pain as a symptom for your cancer and did you have a small nodule? The reason I ask is that my oncologist today suggested that my pain in my throat/neck is not related to my 2 cm nodule which they suspect hurthle cell neoplasm. She said even if it's cancer, there is a 0 chance it would cause pain at this size and has referred me to neurologist. I'm in so much pain, I feel pretty hopeless. Ive posted another board but haven't heard back from many people except one who has been very helpful.
  • dunatuna
    dunatuna Member Posts: 4
    Saritav said:

    Pain
    Did any of you have pain as a symptom for your cancer and did you have a small nodule? The reason I ask is that my oncologist today suggested that my pain in my throat/neck is not related to my 2 cm nodule which they suspect hurthle cell neoplasm. She said even if it's cancer, there is a 0 chance it would cause pain at this size and has referred me to neurologist. I'm in so much pain, I feel pretty hopeless. Ive posted another board but haven't heard back from many people except one who has been very helpful.

    pain w/small nodule
    In 2001, I had hurthle cell carcinoma--2.3 cm with angiolymphatic invasion. It was stage 2 and I had my thyroid removed, in two surgeries. It was discovered at a routine physical exam by my doctor and I was referred to a surgeon. I never had any pain or discomfort or hoarseness while speaking. No symptoms at all. My main concern now is that the endo wants me to up my synthroid and I can't handle the side effects (heart racing, sweating, palpitations), but as I said I never had pain.
  • nootrino
    nootrino Member Posts: 1
    dunatuna said:

    pain w/small nodule
    In 2001, I had hurthle cell carcinoma--2.3 cm with angiolymphatic invasion. It was stage 2 and I had my thyroid removed, in two surgeries. It was discovered at a routine physical exam by my doctor and I was referred to a surgeon. I never had any pain or discomfort or hoarseness while speaking. No symptoms at all. My main concern now is that the endo wants me to up my synthroid and I can't handle the side effects (heart racing, sweating, palpitations), but as I said I never had pain.

    hurtle cell neoplasm
    Hi everyone. New user on here. Was wondering if this is the only thread that discusses Hurtle cells issues or if there is another one on this board or elsewhere. I am looking for resources and people who can offer their firsthand experiences. Much appreciated.
    Here is my story. 48 year old male. Went to doctor and out of blue he wanted to perform an ultrasound on my thyroid. No symptoms or pain. Thyroid tests normal, albeit now that I look at them they are on the upper normal and lower low of normal (wondering if that in itself is a sign of thyroid issues that doctors ignore). Anyways, he told me 1.5cm cyst in left lobe. "99 % of these are usually nothing". I asked "what would you do". He said that if he were in my shoes he's have an FNA done, which I did and two weeks later found out "suspicious for Hurtle Cell neoplasm". Don't remember exact veriage but variant size Hurtle cells found single and clustered. "some transgressing vessels". "no lymphocytes". "erratically placed macronucleoli". Sorry for spelling but doctor said the result was "not completely normal" but NOT CANCER. Hmmm... Not sure how he would know that other than perhaps the FNA results offered some insight. In any case, picked doctor in Manhattan who is subject matter expert and saw him a few weeks ago. He advised removal of left thyroid and isthmus. Will do frozen section during surgery although he doesn't have much confidence in that he mentioned. Final pathology will indicate whether cancer or not, which he said is about 20% likelihood for my case, age, etc. Although I'm 48 he felt I fell more into the under 45 statistical group, or perhaps he's just being optimistic. So surgery in a few weeks.
    Some questions: my ultrasound was in late August, surgery in December: am I waiting too long. Both internist and thyroid surgery didn't feel urgency but said must have this dealt with no later than 3 months.
    Has anyone had similar FNA results, profile and tumour size?
    Understandably while I've been told not to get worried, there is a chance this could be cancer but surgeon said I'd enter at Stage 2. Which still frightens me as I have small children and there is very little information about this type of cancer and prognosis on the web. The stuff I have found so far is all over the place.
    Anyways, not to rant. I am glad people are posting there stories on here, I've read the entire thread as far back as 2009. I do notice though that people do stop posting after a while. I'm just hoping that this is a sign that they have their condition under control and are living their lives and not dwelling on their conditions too much.
  • catladysue237
    catladysue237 Member Posts: 25
    nootrino said:

    hurtle cell neoplasm
    Hi everyone. New user on here. Was wondering if this is the only thread that discusses Hurtle cells issues or if there is another one on this board or elsewhere. I am looking for resources and people who can offer their firsthand experiences. Much appreciated.
    Here is my story. 48 year old male. Went to doctor and out of blue he wanted to perform an ultrasound on my thyroid. No symptoms or pain. Thyroid tests normal, albeit now that I look at them they are on the upper normal and lower low of normal (wondering if that in itself is a sign of thyroid issues that doctors ignore). Anyways, he told me 1.5cm cyst in left lobe. "99 % of these are usually nothing". I asked "what would you do". He said that if he were in my shoes he's have an FNA done, which I did and two weeks later found out "suspicious for Hurtle Cell neoplasm". Don't remember exact veriage but variant size Hurtle cells found single and clustered. "some transgressing vessels". "no lymphocytes". "erratically placed macronucleoli". Sorry for spelling but doctor said the result was "not completely normal" but NOT CANCER. Hmmm... Not sure how he would know that other than perhaps the FNA results offered some insight. In any case, picked doctor in Manhattan who is subject matter expert and saw him a few weeks ago. He advised removal of left thyroid and isthmus. Will do frozen section during surgery although he doesn't have much confidence in that he mentioned. Final pathology will indicate whether cancer or not, which he said is about 20% likelihood for my case, age, etc. Although I'm 48 he felt I fell more into the under 45 statistical group, or perhaps he's just being optimistic. So surgery in a few weeks.
    Some questions: my ultrasound was in late August, surgery in December: am I waiting too long. Both internist and thyroid surgery didn't feel urgency but said must have this dealt with no later than 3 months.
    Has anyone had similar FNA results, profile and tumour size?
    Understandably while I've been told not to get worried, there is a chance this could be cancer but surgeon said I'd enter at Stage 2. Which still frightens me as I have small children and there is very little information about this type of cancer and prognosis on the web. The stuff I have found so far is all over the place.
    Anyways, not to rant. I am glad people are posting there stories on here, I've read the entire thread as far back as 2009. I do notice though that people do stop posting after a while. I'm just hoping that this is a sign that they have their condition under control and are living their lives and not dwelling on their conditions too much.

    Hurthle Cell
    I have Hurthle Cell. In January, they removed my left thyroid. It took 3 weeks to find cancer. Even though they found very few cells, I had a Total Thyroidectomy in April because this is an aggressive type of thyroid cancer. At this point, I almost wish I had left the right side in as I have not felt normal since then. I am either so tired I can barely stay awake or my heart is racing so much I call an ambulance. Before my TT, I had never been in an ambulance. Since the first of the year I have been 4 times.So much for "this won't have much effect other than taking meds"!
  • azpeitia
    azpeitia Member Posts: 1

    my story...
    Thanks for filling me in on your situation. I am sorry to hear about it, but I must say it makes me feel a little better knowing that I am not alone out there. I hope that's not coming across as rude, I don't mean to be... I just need someone to talk to who is in my boat. I am guessing you are a female? I am a 38 year old mother of three.... I didn't even know that I had any nodules- my primary care doctor suspected problems with my thyroid... then onto sonograms, FNA's, total thyroidectomy, cancer.... it is just unreal. I just began synthroid yesterday. What is cytomel? Is it a form of thyroid hormone or is it the med. that keeps you from getting such severe symptoms prior to the radioactive iodine treatment? The info. out there on our type of cancer and the iodine treatment makes me nervous- I just want to be told for sure that after the iodine, the cancer will be gone but obviously that won't happen- the waiting and wondering are frightening. You are like a week or two ahead of me- my iodine treatment is Sept 18th. I just saw the endo. yesterday, but I didn't have even a single question because I was so stunned. Please let me know what you find out when you and your friend go, and I will keep you posted on anything I hear. Where are you? I live in MD. Also, I am sorry about the run-on paragraphs.... my enter key doesn't work and trust me, that is a pain in the butt! :) Good luck and thank you for listening :)

    Just starting out
    Thank you for the information on this board. My question is now that it's 2 years later for you, what would you do differently? I'm just starting out, in 2 weeks I've had my sonogram, FNA & core biopsy which shows Hurthle cells and will meet with a general surgeon with a thyroid specialty in 2 days to discuss surgery in another 2 weeks. I setup the surgeon appointments before I found out the biopsy & Hurthle cells results.
  • sr_mccreery
    sr_mccreery Member Posts: 12

    Hurthle cell
    Did you ever find anyone? I have been diagnosed within the last month and am having trouble relating to my family about this.

    Hurtle Cell
    Yeah, I, too, had Hurtle cell carcinoma. I am 40 years old, and had a total thyroidectomy at 38. It used to scare the heck out of me, but after a while you just stop dwelling on it so much and take the "what can we do to fix this" approach. Not saying I don't panic after a biopsy awaiting the results, but thus far, I haven't had any reoccurances. I've had no ill effects from the cancer at all. Best of luck to you, and feel free to ask me if you have any questions. Any of you. I am also an RN. Merry Christmas everyone!!!
  • sr_mccreery
    sr_mccreery Member Posts: 12
    Hurthle cell
    Yeah, I have Hurtle cell, too. Hard to find many like us :(. I am status-post total thyroidectomy and have had no problems! :) Merry Christmas.
  • rebeccamae
    rebeccamae Member Posts: 7

    Hurthle cell
    Yeah, I have Hurtle cell, too. Hard to find many like us :(. I am status-post total thyroidectomy and have had no problems! :) Merry Christmas.

    Stage 4
    I don't see where to start a new post so I'll reply here. If someone would like to copy and paste it so others could read it, that would be fine. My husband had his first thyroid surgery in 2006. The last few years he has had lumps removed from his neck about every 6 months. This spring he started having leg pain. He had a scan and found out that it has metastasized to his sacrum. Tumor is impinging sciatic nerve and causing major pain. He frequently has his pain meds upped. He has a patch and is also taking dilodid. I'm not sure of the spelling. Now he has a lump on his head that is also hurtle cell. There is a hole in his skull from it. He has completed radiation and plans to start chemo soon. They have completed clinical trials on Nexavar for hurtle cell and it has helped shrink tumors. Be sure you find out exactly what part of your body is being scanned. We thought his whole body was being scanned, but he was only being scanned to the waist. When they scanned his neck, he thought his head was also being scanned too. This cancer spreads to bone. if you have back or leg pain, waste no time in finding the source of your pain. This is not a pretty picture, but thought I'd post so you know what it can do. The oncologist told him it was unlikely that it would shorten his life spanish. Don't let anyone tell you that!!!
  • rebeccamae
    rebeccamae Member Posts: 7
    bklowe said:

    What now??
    I am Kristin's sister, Kelley. My mom received the phone call that the RAI did not take. It's not that I'm surprised but more that I feel like we are at a loss with what to do next. Has anyone done any clinical studies or trials that have had a positive outcome? I'm willing to look anywhere considering chemo seems to be useless and I'm assuming that is what the doctors are going to want us to do. That is just not good enough and I'm ready to move on. Any info would be great!

    Thanks,
    Kelley

    Clinical trial
    A clinical trial for Nexavar was recently completed and found to be helpful It hasn't been approved yet though.
  • IrishTheresa
    IrishTheresa Member Posts: 2

    Stage 4
    I don't see where to start a new post so I'll reply here. If someone would like to copy and paste it so others could read it, that would be fine. My husband had his first thyroid surgery in 2006. The last few years he has had lumps removed from his neck about every 6 months. This spring he started having leg pain. He had a scan and found out that it has metastasized to his sacrum. Tumor is impinging sciatic nerve and causing major pain. He frequently has his pain meds upped. He has a patch and is also taking dilodid. I'm not sure of the spelling. Now he has a lump on his head that is also hurtle cell. There is a hole in his skull from it. He has completed radiation and plans to start chemo soon. They have completed clinical trials on Nexavar for hurtle cell and it has helped shrink tumors. Be sure you find out exactly what part of your body is being scanned. We thought his whole body was being scanned, but he was only being scanned to the waist. When they scanned his neck, he thought his head was also being scanned too. This cancer spreads to bone. if you have back or leg pain, waste no time in finding the source of your pain. This is not a pretty picture, but thought I'd post so you know what it can do. The oncologist told him it was unlikely that it would shorten his life spanish. Don't let anyone tell you that!!!

    In lungs
    Hello everybody, and thanks to everyone for sharing information and thoughts. My dad had his thyroid removed 11 years ago. 18 months ago he found lumps on his neck and had a huge surgery on his neck, in a H shape, to remove lymph nodes etc. We were told the surgery went extremely well. Dad is physically a very strong person and is in really good health (apart from the cancer!) so surgery suits him very well. He had radioactive iodine treatment after this.
    However, it spread and is now in both of his lungs (one lobe on each side). I am really, really bad at understanding medical matters but this is one case I don't want to get wrong. My dad is the best dad in the world and I want to make sure he has every chance. I'm in Ireland and was wondering if you all thought he would get better care abroad, and if so where. He had more radioactive iodine treatment before Christmas and we have just been told it didn't work. He has now been referred for possible chemotherapy. From what I've been reading chemo does not work on hurthle cell tumours, or is this cutting-edge stuff they are going to try on him??? Sometimes I wish I was a doctor - at least them I'd know he would get the best care available. So frustrated and angey with myself right now because I am so ignorant and don't know what to do, if you know what I mean. I suppose everyone goes through this! Anyway, please let me know what you think. x
  • rebeccamae
    rebeccamae Member Posts: 7

    In lungs
    Hello everybody, and thanks to everyone for sharing information and thoughts. My dad had his thyroid removed 11 years ago. 18 months ago he found lumps on his neck and had a huge surgery on his neck, in a H shape, to remove lymph nodes etc. We were told the surgery went extremely well. Dad is physically a very strong person and is in really good health (apart from the cancer!) so surgery suits him very well. He had radioactive iodine treatment after this.
    However, it spread and is now in both of his lungs (one lobe on each side). I am really, really bad at understanding medical matters but this is one case I don't want to get wrong. My dad is the best dad in the world and I want to make sure he has every chance. I'm in Ireland and was wondering if you all thought he would get better care abroad, and if so where. He had more radioactive iodine treatment before Christmas and we have just been told it didn't work. He has now been referred for possible chemotherapy. From what I've been reading chemo does not work on hurthle cell tumours, or is this cutting-edge stuff they are going to try on him??? Sometimes I wish I was a doctor - at least them I'd know he would get the best care available. So frustrated and angey with myself right now because I am so ignorant and don't know what to do, if you know what I mean. I suppose everyone goes through this! Anyway, please let me know what you think. x

    My husband has hurthle cell
    My husband has hurthle cell and he is going to be participating in a clinical trial through the Mayo clinic in Rochester, MN. He will be taking a form of chemo in pill form. You should find out if your dad could get in on that. A very similar drug has proven to help. The clinical trial for that one has closed and it hasn't been approved yet. The drugs are called serafanib and Nexavar. Hope I spelled them right.
  • rebeccamae
    rebeccamae Member Posts: 7

    In lungs
    Hello everybody, and thanks to everyone for sharing information and thoughts. My dad had his thyroid removed 11 years ago. 18 months ago he found lumps on his neck and had a huge surgery on his neck, in a H shape, to remove lymph nodes etc. We were told the surgery went extremely well. Dad is physically a very strong person and is in really good health (apart from the cancer!) so surgery suits him very well. He had radioactive iodine treatment after this.
    However, it spread and is now in both of his lungs (one lobe on each side). I am really, really bad at understanding medical matters but this is one case I don't want to get wrong. My dad is the best dad in the world and I want to make sure he has every chance. I'm in Ireland and was wondering if you all thought he would get better care abroad, and if so where. He had more radioactive iodine treatment before Christmas and we have just been told it didn't work. He has now been referred for possible chemotherapy. From what I've been reading chemo does not work on hurthle cell tumours, or is this cutting-edge stuff they are going to try on him??? Sometimes I wish I was a doctor - at least them I'd know he would get the best care available. So frustrated and angey with myself right now because I am so ignorant and don't know what to do, if you know what I mean. I suppose everyone goes through this! Anyway, please let me know what you think. x

    My husband has hurthle cell
    My husband has hurthle cell and he is going to be participating in a clinical trial through the Mayo clinic in Rochester, MN. He will be taking a form of chemo in pill form. You should find out if your dad could get in on that. A very similar drug has proven to help. The clinical trial for that one has closed and it hasn't been approved yet. The drugs are called serafanib and Nexavar. Hope I spelled them right.
  • KCA12
    KCA12 Member Posts: 2
    azpeitia said:

    Just starting out
    Thank you for the information on this board. My question is now that it's 2 years later for you, what would you do differently? I'm just starting out, in 2 weeks I've had my sonogram, FNA & core biopsy which shows Hurthle cells and will meet with a general surgeon with a thyroid specialty in 2 days to discuss surgery in another 2 weeks. I setup the surgeon appointments before I found out the biopsy & Hurthle cells results.

    Hurthle cell had already metastasized
    I guess I did this backward. Diagnosed with malignant bone tumor, had it removed, then learned it was from Hurthle cell thyroid cancer. Had thyroid removed. Does this sound familiar to anyone else? What happens next? I can't find any references to a similar case anywhere. Thanks, in advance, for any knowledge, help or insight!