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Hurthle Cell Carcinoma

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Comments

  • pfmerriell
    pfmerriell Member Posts: 22
    Nocaliman said:

    Hi Pat
    How's the treatment going? Three days now? How are you feeling? Hope things are going well and you have no side effects. Shoot me a message if you have any Q's.

    Chris

    Hi, Chris
    The week went very

    Hi, Chris

    The week went very well; dose of!-123 Tue; uptake scan and another dose Wed; thyroid scan and whole body scan thurs; only uptake was in the thyroid area; today's treatment was 130mCu of !-131. No side effects so far; just very tired. After the 2-hour drive home I took a long nap; more tired than hungry. Things seem to be going well. Follow-up WBS next Friday.

    Thanks for checking in.

    Pat
  • pfmerriell
    pfmerriell Member Posts: 22
    Nocaliman said:

    Hi Pat
    How's the treatment going? Three days now? How are you feeling? Hope things are going well and you have no side effects. Shoot me a message if you have any Q's.

    Chris

    Hi, Chris
    The week went very

    Hi, Chris

    The week went very well; dose of!-123 Tue; uptake scan and another dose Wed; thyroid scan and whole body scan thurs; only uptake was in the thyroid area; today's treatment was 130mCu of I-131. No side effects so far; just very tired. After the 2-hour drive home I took a long nap; more tired than hungry. Things seem to be going well. Follow-up WBS next Friday.

    Thanks for checking in.

    Pat
  • hurthle cell
    Hi...I had thyroid cancer and it turned out to be hurthle cell. I, like everyone else here, was terrified. I had 2 small children, and was really upset. I had one lobe removed, and then then second lobe 2 weeks later. This was in November, and in February I had the I-131. I am happy to say this all happened 12 years ago!! I am fine, and feel great. The radiation after effects were not too bad - I had some sores in my mouth and throat, and food tasted like metal for awhile. I am now on Synthroid and doing well. Good luck to all of you, and everyone is in my thoughts!!
  • hurthle cell
    Hi...I had thyroid cancer and it turned out to be hurthle cell. I, like everyone else here, was terrified. I had 2 small children, and was really upset. I had one lobe removed, and then then second lobe 2 weeks later. This was in November, and in February I had the I-131. I am happy to say this all happened 12 years ago!! I am fine, and feel great. The radiation after effects were not too bad - I had some sores in my mouth and throat, and food tasted like metal for awhile. I am now on Synthroid and doing well. Good luck to all of you, and everyone is in my thoughts!!

    more
    I just read the other posts and I can honestly tell you we all feel like that when we find out. Cancer. Jeez. I was, as I said, terrified. I do have some trouble with my left parotid gland swelling up once in awhile...if I smell something really good, and like Pavlov's dog, start to salivate. It makes me look like a frog!lol But the nuclear med doc says it's damage from the I-131. As for insomnia, boy, I can sure tell you that for years I would panic if I felt strange, or thought I felt a lump and would constantly touch my neck. It's normal. I am an RN and sometimes I think a little knowledge is too scary. :) Lee
  • yep. Hurthle cell in 1992.
    I had hurthle cell thyroid carcinoma in 1991 at age 32. Since then, melanoma 2x and breast CA in 2006.
  • tessdockery
    tessdockery Member Posts: 1

    hurthle cell cancer
    Yes, I have hurthle cell cancer. I just found out yesterday after the pathology report from a total thyroidectomy came back (due to hurthle cell adenomas). This is shocking, scary news. Please, tell me your story and I will share mine, though my journey has just begun..... :)

    Hurthle Dx September 2006
    Hello all

    I have just joined the group but am so happy to report that I am cancer free at the time! I am 28 years old and was diagnosed when I was about 20 weeks pregnant with my daughter (who is healthy as she can be)! I underwent a partial thyroidectomy at 18 weeks, found out it was Hurthle Cell, was able to carry Sophia to term and went in for the total thyroidectomy about a month after delivering Sophia. I was treated in August 2007 with Radioactive Iodine, which showed an uptake in the thyroid bed and I was put into isolation and given the full dose of RAI. I can say that the worst part of my treatment was the low-iodine diet. Isolation for 24 hours was difficult, but I made it through just fine and with a better appreciation for what I have in life. Six months later, I was treated with a tracer dose of RAI, followed by full body scans and luckily, those scans came back clean. This past April, my endo approved for me to take the Thyrogen injections as opposed to going hypo while prepping for treatment. I still had to follow the low-iodine diet, but atleast my body was not hypo and worn down from not have my meds. The results from those scans also came back clean! I am now on a two year break from treatment!!!

    I am so thrilled to report that I am now pregnant with my second child, a little boy, who will be with us in January 2010. Cancer is by far the scariest battle I've fought. It's filled with ups and downs and just not knowing what havoc may be going on inside your body. I know, it's hard. BUT life goes on and you learn to deal with it the best you can. I still have days when I think it could come back...and it could. But I refuse to live my life wondering "what if". The best advice I have is to get a good endo...one that knows his stuff and one that is compassionate to your specific situation. I can say with 100% certainty that I have the best endo in the world...I would argue with anyone. He saved my life and has given me back the reassurance and confidence in my body that I lost. My life will never be the same but I'm grateful for that.

    If anyone has any questions about my story, just let me know. I was so lost when I was diagnosed, this is such a great support site.
  • Nocaliman
    Nocaliman Member Posts: 9

    Hi, Chris
    The week went very

    Hi, Chris

    The week went very well; dose of!-123 Tue; uptake scan and another dose Wed; thyroid scan and whole body scan thurs; only uptake was in the thyroid area; today's treatment was 130mCu of I-131. No side effects so far; just very tired. After the 2-hour drive home I took a long nap; more tired than hungry. Things seem to be going well. Follow-up WBS next Friday.

    Thanks for checking in.

    Pat

    Hi Pat
    I was thinking about you this morning so I decided to drop you a line to see how your doing. Hope things are well. Any side effects from the 131? I had a few delayed side effects after the last time we talked. Lost my taste.....everything tasted like it needed salt. It's coming back now. I work a pretty physical job and when I first got back to work I think the sweat on my head was radioactive and irritated my scalp. Also some weird new throat and jaw pain.

    How about you? how are you feeling? How did your scan come out?

    Hope things are well.
    Chris
  • Nocaliman
    Nocaliman Member Posts: 9

    more
    I just read the other posts and I can honestly tell you we all feel like that when we find out. Cancer. Jeez. I was, as I said, terrified. I do have some trouble with my left parotid gland swelling up once in awhile...if I smell something really good, and like Pavlov's dog, start to salivate. It makes me look like a frog!lol But the nuclear med doc says it's damage from the I-131. As for insomnia, boy, I can sure tell you that for years I would panic if I felt strange, or thought I felt a lump and would constantly touch my neck. It's normal. I am an RN and sometimes I think a little knowledge is too scary. :) Lee

    Hi Lee
    Thank you for posting. I think it gives us all hope that things will be OK for us.

    Thanks again for posting.
    Chris
  • Nocaliman
    Nocaliman Member Posts: 9
    Rita C said:

    Hello Chris
    I can so relate to your last paragraph about your life changing forever. I could not have said it better myself.

    Recently, I received an email from someone that I met only one time, but it has had an amazingly positive impact on me at the right time in my life. It is a download of the Andrea Boceli & Celine Dion - The Prayer. You would probably love it as well. It gives me comfort and peace. If you can't find it on the web, just let me know & I can forward to you the email w/ the download.

    Many Blessings to You,
    Rita

    Hi Rita
    Thanks for the song tip. I downloaded it and It's a beautiful song.

    Many Blessings back to you and may God bless you.

    Chris
  • pfmerriell
    pfmerriell Member Posts: 22
    Nocaliman said:

    Hi Pat
    I was thinking about you this morning so I decided to drop you a line to see how your doing. Hope things are well. Any side effects from the 131? I had a few delayed side effects after the last time we talked. Lost my taste.....everything tasted like it needed salt. It's coming back now. I work a pretty physical job and when I first got back to work I think the sweat on my head was radioactive and irritated my scalp. Also some weird new throat and jaw pain.

    How about you? how are you feeling? How did your scan come out?

    Hope things are well.
    Chris

    Hi Chris
    I had started a new thread, but I'll repeat it here:

    I have completed my RAI treatment and the scan looks good; no sign of cancer any where else. I am now taking Levoxyl (112 mcg) and will have my first blood work at the end of October. My pre-treatment thyroglobulin level was low, so the endo is optimistic. I had some neck pain/tenderness, sore throat after the RAI, but mostly the fatigue has been the hardest thing.

    I also have been having some delayed side effects: some sores in my mouth and everything I drink tastes salty; and the taste of food comes and goes. I'm pretty spent by the end of the day; would be nice to be able to work just half-a-day for a while, but that's been tough. I am planning a vacation the end of the month to visit friends and family.

    Thanks for checking in. In a strange quirk, I've just heard about another woman I know here who's been diagnosed and will have RAI next week; we even have the same endo and surgeon. Our sons were friends in high school. Just too weird.
  • mainstreet39154
    mainstreet39154 Member Posts: 8
    diagnosed April 2009 HCC
    4.7 cm nodule hurthle cell removed April 2009 with TT
    RAI and WBS July 2009

    TSH and Tg were on target until this week TSH elevated.
    Waiting for appt. with MD Anderson later this month

    Anyone else have TSH issues? Synthroid increased 3 times and all was well,numbers decreasing and then BAM it was up! Tg undetectable so I'm happy about that. I'm still a bit apprehensive. Pathology showed vascular and capsular invasion.
  • mainstreet39154
    mainstreet39154 Member Posts: 8
    diagnosed April 2009 HCC
    4.7 cm nodule hurthle cell removed April 2009 with TT
    RAI and WBS July 2009

    TSH and Tg were on target until this week TSH elevated.
    Waiting for appt. with MD Anderson later this month

    Anyone else have TSH issues? Synthroid increased 3 times and all was well,numbers decreasing and then BAM it was up! Tg undetectable so I'm happy about that. I'm still a bit apprehensive. Pathology showed vascular and capsular invasion.
  • nikkidai
    nikkidai Member Posts: 4
    hurtle
    Hi, I had Hurthle & follicular Nov 2006. RAI high dose in Jan 2007 now awaiting my 2nd WBS. In doing my research I can see that RAI scans may not be the way to go with Hurthle. Has anyone had a negative WBS, but something has showed up on a PET scan? Has anyone had a positive WBS a year or more after treatment? I am wondering how much experience most Docs even have with hurthle.
  • wlangley
    wlangley Member Posts: 9
    nikkidai said:

    hurtle
    Hi, I had Hurthle & follicular Nov 2006. RAI high dose in Jan 2007 now awaiting my 2nd WBS. In doing my research I can see that RAI scans may not be the way to go with Hurthle. Has anyone had a negative WBS, but something has showed up on a PET scan? Has anyone had a positive WBS a year or more after treatment? I am wondering how much experience most Docs even have with hurthle.

    Hurthle Cell Carcinoma diagnosed May 09
    After a nodule was discovered on my right thyroid in Jan 09, and a series of in determinant tests(sonogram, needle biopsy, thyroid uptake scan(cold nodule), I had the right thyroid removed in early May 09(my left thyroid was removed in Nov 90 and the nodule was found to be benign). The pathology report with a second opinion for Stanford Medical Center was Hurthle Cell Carcinoma with vascular invasion.

    I found a noted head and neck surgeon at the UCSF Medical Center in San Francisco who was an expert in Hurthle Cell Carcinoma and after a sonogram showed additional thyroid tissue remaining, she performed a second completion thyroidectomy in Aug 09and took out 6 lymph nodes. The pathology report was positive in that it showed good surgical margins and only one of the lymph nodes showed questionable cells. After 5 weeks of a low iodine diet, I had 2 Thyrogen shots and the radioactive iodine ablation treatment the first week of Oct 09. The body scan a week later showed that the iodine had been taken up in two places--what appeared to be residual thyroid tissue in the neck and whis is most likely a lymph node with metastasized cancer below my left breastbone. The nuclear medicine physician indicated that it was positive that the iodine had been taken up as this is only a 20% probability; he also recommended that we do another full body scan in 6 months to determine if the radiation ablation treatment has killed the tissue which showed up on the first body scan. My endocrinologist who works with the head and neck surgeon confirmed what the nuclear medicine physician had said and also said that the blood test to determine levels of thyroid harmone were confirming that at least the second operation had removed the residual thyroid tissue so that blood test can be used to detect thyroid activity in the body which would indicate metastasized cancer. I see the head and neck surgeon on Nov 2 and will rely greatly on her advice as to what the next steps should be to maximize the chances that the cancer has been found and is likely to have been eliminated by the ablation treatment
  • 10acity
    10acity Member Posts: 5
    wlangley said:

    Hurthle Cell Carcinoma diagnosed May 09
    After a nodule was discovered on my right thyroid in Jan 09, and a series of in determinant tests(sonogram, needle biopsy, thyroid uptake scan(cold nodule), I had the right thyroid removed in early May 09(my left thyroid was removed in Nov 90 and the nodule was found to be benign). The pathology report with a second opinion for Stanford Medical Center was Hurthle Cell Carcinoma with vascular invasion.

    I found a noted head and neck surgeon at the UCSF Medical Center in San Francisco who was an expert in Hurthle Cell Carcinoma and after a sonogram showed additional thyroid tissue remaining, she performed a second completion thyroidectomy in Aug 09and took out 6 lymph nodes. The pathology report was positive in that it showed good surgical margins and only one of the lymph nodes showed questionable cells. After 5 weeks of a low iodine diet, I had 2 Thyrogen shots and the radioactive iodine ablation treatment the first week of Oct 09. The body scan a week later showed that the iodine had been taken up in two places--what appeared to be residual thyroid tissue in the neck and whis is most likely a lymph node with metastasized cancer below my left breastbone. The nuclear medicine physician indicated that it was positive that the iodine had been taken up as this is only a 20% probability; he also recommended that we do another full body scan in 6 months to determine if the radiation ablation treatment has killed the tissue which showed up on the first body scan. My endocrinologist who works with the head and neck surgeon confirmed what the nuclear medicine physician had said and also said that the blood test to determine levels of thyroid harmone were confirming that at least the second operation had removed the residual thyroid tissue so that blood test can be used to detect thyroid activity in the body which would indicate metastasized cancer. I see the head and neck surgeon on Nov 2 and will rely greatly on her advice as to what the next steps should be to maximize the chances that the cancer has been found and is likely to have been eliminated by the ablation treatment

    Happy to have found this site!
    WOW! It's interesting to see how "Hurthle Cell" really sends you into major investigative mode! Here's a view from a patient in the Canadian health care system. In 2004 a 2.4 cm. nodule was discovered on the left thyroid lobe. I was referred to an ENT at that time who's advice was "it's a very complicated surgery (thyroid) so we'll just keep an eye on it to make sure it doesn't grow". Well in the process of re-locating, changing family doctors, etc. the "nodule" was forgotten. Here I am 5 years later with a 4.7 cm. "cold" nodule. It was FNA'd in October and determined to be "Hurthle cell neoplasm (favoured) with hyperplastic nodule with oncocytic metaplasia". It may help most of you to know that the speed with which you are obtaining your surgeries and treatments is much better than what we in Canada have available. The earliest I can expect to have this tumour removed is "sometime" in January, 2010. We all know that the longer this thing remains where it is, the more potential it has to cause irreversible damage. Oh, and the right lobe also has a "9x5 mm hypoechoic solid nodule in the isthmus." So a total thyroidectomy will be performed sometime in January and two lymph nodes will be tested for metasteses.

    Here is a wonderful publication that I've discovered during my research:
    "Management of Thyroid Cancer and Related Nodular Disease" - I. Ross McDougall, 397 pgs. 2006- If you "google" the title, it will bring you to the google books site and the text is available online - He is a renowned "Stanford" thyroid specialist. Pages 258-260 deal specifically with "Hurthle Cell Carcinoma."

    I'm afraid that at this stage I'm not terribly optimistic, even though I refuse to go down without a major fight. I'm the 55 year single mother of a 15 year old son and neither one of us are ready to see me leave yet! It encourages me to see some of the good stories that are being posted here. Thank you all and good luck!
  • samanjan
    samanjan Member Posts: 40
    10acity said:

    Happy to have found this site!
    WOW! It's interesting to see how "Hurthle Cell" really sends you into major investigative mode! Here's a view from a patient in the Canadian health care system. In 2004 a 2.4 cm. nodule was discovered on the left thyroid lobe. I was referred to an ENT at that time who's advice was "it's a very complicated surgery (thyroid) so we'll just keep an eye on it to make sure it doesn't grow". Well in the process of re-locating, changing family doctors, etc. the "nodule" was forgotten. Here I am 5 years later with a 4.7 cm. "cold" nodule. It was FNA'd in October and determined to be "Hurthle cell neoplasm (favoured) with hyperplastic nodule with oncocytic metaplasia". It may help most of you to know that the speed with which you are obtaining your surgeries and treatments is much better than what we in Canada have available. The earliest I can expect to have this tumour removed is "sometime" in January, 2010. We all know that the longer this thing remains where it is, the more potential it has to cause irreversible damage. Oh, and the right lobe also has a "9x5 mm hypoechoic solid nodule in the isthmus." So a total thyroidectomy will be performed sometime in January and two lymph nodes will be tested for metasteses.

    Here is a wonderful publication that I've discovered during my research:
    "Management of Thyroid Cancer and Related Nodular Disease" - I. Ross McDougall, 397 pgs. 2006- If you "google" the title, it will bring you to the google books site and the text is available online - He is a renowned "Stanford" thyroid specialist. Pages 258-260 deal specifically with "Hurthle Cell Carcinoma."

    I'm afraid that at this stage I'm not terribly optimistic, even though I refuse to go down without a major fight. I'm the 55 year single mother of a 15 year old son and neither one of us are ready to see me leave yet! It encourages me to see some of the good stories that are being posted here. Thank you all and good luck!

    Thanks for the tip on the
    Thanks for the tip on the book.
    I found it on Amazon.
  • angelboatright
    angelboatright Member Posts: 4
    I read all 46 comments
    I read all 46 comments posted on this blog and would like to thank Rebeccamae for starting the discussion. For the last couple of months, I have been unclear, in a lot of areas and knowledge, concerning "hurthle cell". Thank you to all of you for sharing your true life stories and knowledge. It's one thing to be diagnosed with the possibility of having thyroid cancer, but I am concerned about the invasive obstacles (without solid medical facts) to diagnose/rule out cancer, and the additional surgeries required.

    How does someone develop hurthle cells?? What are DNA changes??? I am someone who never underwent prior exposure to radiation treatment, never lived near a nuclear plant, or had a family with a history of thyroid cancer....

    For the last 4 years, I have experienced problems with weight gain, tiredness, blury vision, dizziness, etc. I am faithful with my annual and PRN medical visits each year. For the last 4 years, my symptoms have prompted thyroid blood work almost annually, which has always resulted in acceptable levels. I recall in April of this year, crying to my physician's nurse after she advised all my blood work was fine, yet again. I stated to her that I know there is something wrong with me, not that I am wishing this. Six months later, a lump was present in the front of my throat (and for the past several years, I've had numerous episodes of swelling in my lymph nodes and neck area).

    I want to ensure I receive the best medical treatment to avoid additional surgeries and reocurrences. I haven't undergone some of the testing some of you have shared. I don't want to just go through this surgery without knowing all the facts. I have requested x-rays of my chest, PET scans, but told not necessary. I am now having 2nd thoughts of postponing my surgery on the 15th until I know more...
  • wlangley
    wlangley Member Posts: 9

    I read all 46 comments
    I read all 46 comments posted on this blog and would like to thank Rebeccamae for starting the discussion. For the last couple of months, I have been unclear, in a lot of areas and knowledge, concerning "hurthle cell". Thank you to all of you for sharing your true life stories and knowledge. It's one thing to be diagnosed with the possibility of having thyroid cancer, but I am concerned about the invasive obstacles (without solid medical facts) to diagnose/rule out cancer, and the additional surgeries required.

    How does someone develop hurthle cells?? What are DNA changes??? I am someone who never underwent prior exposure to radiation treatment, never lived near a nuclear plant, or had a family with a history of thyroid cancer....

    For the last 4 years, I have experienced problems with weight gain, tiredness, blury vision, dizziness, etc. I am faithful with my annual and PRN medical visits each year. For the last 4 years, my symptoms have prompted thyroid blood work almost annually, which has always resulted in acceptable levels. I recall in April of this year, crying to my physician's nurse after she advised all my blood work was fine, yet again. I stated to her that I know there is something wrong with me, not that I am wishing this. Six months later, a lump was present in the front of my throat (and for the past several years, I've had numerous episodes of swelling in my lymph nodes and neck area).

    I want to ensure I receive the best medical treatment to avoid additional surgeries and reocurrences. I haven't undergone some of the testing some of you have shared. I don't want to just go through this surgery without knowing all the facts. I have requested x-rays of my chest, PET scans, but told not necessary. I am now having 2nd thoughts of postponing my surgery on the 15th until I know more...

    Diagnosis
    I would think before scheduling you for surgery there would be significant diagnostic information to indicate a reasonable possibility of cancer--for me it was 0) prior history of benign nodule in other thyroid lobe 1) a significant nodule, 2) indeterminate needle biopsy 3) cold nodule on radioactive iodine uptake scan. Based on these results the odds of cancer were high enough to warrant a completion thyroid-ectomy since the worse results if it wasn't cancer was the need to take thyroid replacement hormone for the rest of my life. The pathology from the nodule that was removed was hurthle cell carcinoma and that led to the treatment that I described in the post.
  • samanjan
    samanjan Member Posts: 40
    wlangley said:

    Diagnosis
    I would think before scheduling you for surgery there would be significant diagnostic information to indicate a reasonable possibility of cancer--for me it was 0) prior history of benign nodule in other thyroid lobe 1) a significant nodule, 2) indeterminate needle biopsy 3) cold nodule on radioactive iodine uptake scan. Based on these results the odds of cancer were high enough to warrant a completion thyroid-ectomy since the worse results if it wasn't cancer was the need to take thyroid replacement hormone for the rest of my life. The pathology from the nodule that was removed was hurthle cell carcinoma and that led to the treatment that I described in the post.

    Your story sounds incredibly similar.
    I had no history of past radiation to my neck. My family history only positive for slight hypothyroidism.
    The DNA you are referring to is called Aneuploidy.
    My tumor grew from 4.6 to 5.5 in less than 6 weeks while waiting on surgery which was in Feb.
    Recently my follow ups have been positive. I do admit to thinking initially that once the surgery was complete,I was "good to go."
    My last visit in November produced some surprising results. The bloodwork was so good (thyro down from 10 after RAI 131 to 0.03) that he is not repeating the whole body scan. I will undergo Thyrogen injections and another full neck ultrasound.
    I found interesting reading on Hurthle Cell by J. Walter Kurts, M.D. While 5 years old, it was a very well laid out article.
    Hope you will find this on the internet. It came from Baylor College of Medicine.
  • samanjan
    samanjan Member Posts: 40
    samanjan said:

    Your story sounds incredibly similar.
    I had no history of past radiation to my neck. My family history only positive for slight hypothyroidism.
    The DNA you are referring to is called Aneuploidy.
    My tumor grew from 4.6 to 5.5 in less than 6 weeks while waiting on surgery which was in Feb.
    Recently my follow ups have been positive. I do admit to thinking initially that once the surgery was complete,I was "good to go."
    My last visit in November produced some surprising results. The bloodwork was so good (thyro down from 10 after RAI 131 to 0.03) that he is not repeating the whole body scan. I will undergo Thyrogen injections and another full neck ultrasound.
    I found interesting reading on Hurthle Cell by J. Walter Kurts, M.D. While 5 years old, it was a very well laid out article.
    Hope you will find this on the internet. It came from Baylor College of Medicine.

    Angelboatright
    Please do not postpone your surgery. This disease, while rare, is aggressive.
    I am stage III due to age(55) and tumor size 5.5cm., as stated above.
    Mine grew just waiting for the surgery.
    I am one year into this journey.
    I wish I had found this website a year ago!!
  • sfl67
    sfl67 Member Posts: 55

    Hurthle Dx September 2006
    Hello all

    I have just joined the group but am so happy to report that I am cancer free at the time! I am 28 years old and was diagnosed when I was about 20 weeks pregnant with my daughter (who is healthy as she can be)! I underwent a partial thyroidectomy at 18 weeks, found out it was Hurthle Cell, was able to carry Sophia to term and went in for the total thyroidectomy about a month after delivering Sophia. I was treated in August 2007 with Radioactive Iodine, which showed an uptake in the thyroid bed and I was put into isolation and given the full dose of RAI. I can say that the worst part of my treatment was the low-iodine diet. Isolation for 24 hours was difficult, but I made it through just fine and with a better appreciation for what I have in life. Six months later, I was treated with a tracer dose of RAI, followed by full body scans and luckily, those scans came back clean. This past April, my endo approved for me to take the Thyrogen injections as opposed to going hypo while prepping for treatment. I still had to follow the low-iodine diet, but atleast my body was not hypo and worn down from not have my meds. The results from those scans also came back clean! I am now on a two year break from treatment!!!

    I am so thrilled to report that I am now pregnant with my second child, a little boy, who will be with us in January 2010. Cancer is by far the scariest battle I've fought. It's filled with ups and downs and just not knowing what havoc may be going on inside your body. I know, it's hard. BUT life goes on and you learn to deal with it the best you can. I still have days when I think it could come back...and it could. But I refuse to live my life wondering "what if". The best advice I have is to get a good endo...one that knows his stuff and one that is compassionate to your specific situation. I can say with 100% certainty that I have the best endo in the world...I would argue with anyone. He saved my life and has given me back the reassurance and confidence in my body that I lost. My life will never be the same but I'm grateful for that.

    If anyone has any questions about my story, just let me know. I was so lost when I was diagnosed, this is such a great support site.

    Hurthle Cell Carcinoma
    Hi,
    Congratulations on your healthy little girl and the anticipated birth of your baby boy soon.
    I had a thyroidectomy July 09 and the I-131 in Sept.09. I have not seen my endo since late Aug. My surgeon did a modified throat dissection and has scheduled me for a thyroid bed ultrasound in early Feb. My TSH levels are 1. and I have no idea if this is where they should be. I am on Synthroid 1.25mcg's once daily. I am a 59 year old mom of two beautiful adult daughters and have a wonderful and supportive husband who has been along on this ride with me. I still have tenderness and some pain in my throat and neck, weight gain, lack of energy, hair loss, high blood pressure,swelling in my feet and ankles, etc. My endo does not want to treat the possible hypertension until he is sure I need meds since there was no history before surgery. I'm sorry to have so many questions, but I am really desperate for information on this disease. I'm not sure what is normal and did not anticipate so many questions at time of surgery. Anything you wish to share would be greatly appreciated. Thank you for sharing your story and again, congratulations on your babies.
  • samanjan
    samanjan Member Posts: 40
    samanjan said:

    Angelboatright
    Please do not postpone your surgery. This disease, while rare, is aggressive.
    I am stage III due to age(55) and tumor size 5.5cm., as stated above.
    Mine grew just waiting for the surgery.
    I am one year into this journey.
    I wish I had found this website a year ago!!

    10acity
    Just received the book you spoke of and it is full of interesting facts about the thyroid, diseases and treatments!
    Thanks,
    Elaine
  • dolfan
    dolfan Member Posts: 3

    hurthle cell
    Hi...I had thyroid cancer and it turned out to be hurthle cell. I, like everyone else here, was terrified. I had 2 small children, and was really upset. I had one lobe removed, and then then second lobe 2 weeks later. This was in November, and in February I had the I-131. I am happy to say this all happened 12 years ago!! I am fine, and feel great. The radiation after effects were not too bad - I had some sores in my mouth and throat, and food tasted like metal for awhile. I am now on Synthroid and doing well. Good luck to all of you, and everyone is in my thoughts!!

    thanks for hope
    Hi healthsurvivor! I just had a total thyroid removal 6 days ago and just 2 days ago found out it was Hurthle Cell Carcinoma. Totally in shock right now and going internet crazy. After reading your post I feel hope :) Thank you for that!
  • rutherford
    rutherford Member Posts: 1

    I am sorry to hear about
    I am sorry to hear about your business partner... life doesn't ever ask us what we want. Lung cancer is a devastating blow... A friend of mine has breast cancer and just underwent a mastectomy AND a hysterectomy at the same time. She is doing GREAT and has taken on a positive attitude. At first she was negative and angry- she pushed past the anger and has now taken on a "how can I help my healing" attitude. How are your partner's spirits?
    I think it's the best thing that we keep busy and keep pushing through the side-effects rather than let the side-effects beat us. It won't be easy, of course, but it's better to keep life as normal as possible. I was assuming that the scan will be the real answer as to what we really have going on inside. That, too, is a little scary. I will pray that neither of us have very much "lighting up".]- wouldn't it be great to hear that there is NO LIGHT and you don't need any more treatment!!!! :) Wishful thinking.......

    ? lighting up
    I have just signed up and am presently reading thru all the messages that have been posted. I have had 3 surgeries and am presently waiting to have the radioactive iodine , which will not be done until February followed by the body scan. As very little has been explained to me I am wondering about your comment about "lighttening up". Does this mean that if there is still cancer it will light up when the body scan is done?
  • BellsAngel69
    BellsAngel69 Member Posts: 104
    I've had Hurthle Cell for six years and two reoccurences
    This is my story. I found a hard lump underneath my collar bone in my neck one day. I was rubbing my neck and found it purely by chance. This was Dec. 2003. I immediately freaked out. I knew it was a tumor of some kind, just knew it. I went to the doctor, they sent me to a surgeon who removed it, and low and behold, it was Thyroid cancer. I had a total thyroidectomy in Feb. 2004, and then had to wait until July to have my RAI because when I had a MRI they used iodine based dye when they weren't supposed to. I had my RAI in July 2004, and then the scan, which was clean. For the next three years I did the low-iodine diet and RAI scan and I was clean. Then the following year my doctor let me skip the scan because my TSH levels had been undetectable. I had my blood test done six months later and my TSH was elevated. My doctor ordered another scan and it showed uptake in my left hip bone. I had another RAI treatment in the hospital in Sept. 2007. I thought the treatment had worked. Six months later I had another blood test and my TSH level was elevated even higher, so he ordered a PET scan. The PET showed the same spot in my hip. The RAI didn't do the job, so I then had to have surgery to remove the spot on my hip bone in Sept. 2008. After the surgery, I had blood tests done again and my TSH level was lower but not back to zero. My doctor wasn't too concerned, and told me to come back in six months for another blood test. I had my latest blood test in Nov. 2009. I got a call THREE WEEKS after from my doc saying my TSH levels were elevated even more . . . four times higher to be exact. I'm im a total panic now. Even though my PET scan showed I was clean, my blood tests are saying different. So now I have to do the diet yet again, and have both a PET scan and total body scan with the Thyrogen injections.

    It's been so frustrating to me. I've searched and never found a board that had others that have been going through what I have. I just really need someone to talk to about this. I've always kept upbeat about it all, but I thought when I was diagnosed that after I had my thyroid out I would be cured, just had to be checked every six months. Six years and two reoccurences later, I'm starting to doubt everything they've been telling me.

    If anyone out there would like to talk, please contact me. I need support now so bad you don't know.
  • samanjan
    samanjan Member Posts: 40

    I've had Hurthle Cell for six years and two reoccurences
    This is my story. I found a hard lump underneath my collar bone in my neck one day. I was rubbing my neck and found it purely by chance. This was Dec. 2003. I immediately freaked out. I knew it was a tumor of some kind, just knew it. I went to the doctor, they sent me to a surgeon who removed it, and low and behold, it was Thyroid cancer. I had a total thyroidectomy in Feb. 2004, and then had to wait until July to have my RAI because when I had a MRI they used iodine based dye when they weren't supposed to. I had my RAI in July 2004, and then the scan, which was clean. For the next three years I did the low-iodine diet and RAI scan and I was clean. Then the following year my doctor let me skip the scan because my TSH levels had been undetectable. I had my blood test done six months later and my TSH was elevated. My doctor ordered another scan and it showed uptake in my left hip bone. I had another RAI treatment in the hospital in Sept. 2007. I thought the treatment had worked. Six months later I had another blood test and my TSH level was elevated even higher, so he ordered a PET scan. The PET showed the same spot in my hip. The RAI didn't do the job, so I then had to have surgery to remove the spot on my hip bone in Sept. 2008. After the surgery, I had blood tests done again and my TSH level was lower but not back to zero. My doctor wasn't too concerned, and told me to come back in six months for another blood test. I had my latest blood test in Nov. 2009. I got a call THREE WEEKS after from my doc saying my TSH levels were elevated even more . . . four times higher to be exact. I'm im a total panic now. Even though my PET scan showed I was clean, my blood tests are saying different. So now I have to do the diet yet again, and have both a PET scan and total body scan with the Thyrogen injections.

    It's been so frustrating to me. I've searched and never found a board that had others that have been going through what I have. I just really need someone to talk to about this. I've always kept upbeat about it all, but I thought when I was diagnosed that after I had my thyroid out I would be cured, just had to be checked every six months. Six years and two reoccurences later, I'm starting to doubt everything they've been telling me.

    If anyone out there would like to talk, please contact me. I need support now so bad you don't know.

    samanjan
    Dear BellsAngel69,
    Please call me on my cell which I will provide to you if you email me at: [email protected]
  • persimmony
    persimmony Member Posts: 16

    I've had Hurthle Cell for six years and two reoccurences
    This is my story. I found a hard lump underneath my collar bone in my neck one day. I was rubbing my neck and found it purely by chance. This was Dec. 2003. I immediately freaked out. I knew it was a tumor of some kind, just knew it. I went to the doctor, they sent me to a surgeon who removed it, and low and behold, it was Thyroid cancer. I had a total thyroidectomy in Feb. 2004, and then had to wait until July to have my RAI because when I had a MRI they used iodine based dye when they weren't supposed to. I had my RAI in July 2004, and then the scan, which was clean. For the next three years I did the low-iodine diet and RAI scan and I was clean. Then the following year my doctor let me skip the scan because my TSH levels had been undetectable. I had my blood test done six months later and my TSH was elevated. My doctor ordered another scan and it showed uptake in my left hip bone. I had another RAI treatment in the hospital in Sept. 2007. I thought the treatment had worked. Six months later I had another blood test and my TSH level was elevated even higher, so he ordered a PET scan. The PET showed the same spot in my hip. The RAI didn't do the job, so I then had to have surgery to remove the spot on my hip bone in Sept. 2008. After the surgery, I had blood tests done again and my TSH level was lower but not back to zero. My doctor wasn't too concerned, and told me to come back in six months for another blood test. I had my latest blood test in Nov. 2009. I got a call THREE WEEKS after from my doc saying my TSH levels were elevated even more . . . four times higher to be exact. I'm im a total panic now. Even though my PET scan showed I was clean, my blood tests are saying different. So now I have to do the diet yet again, and have both a PET scan and total body scan with the Thyrogen injections.

    It's been so frustrating to me. I've searched and never found a board that had others that have been going through what I have. I just really need someone to talk to about this. I've always kept upbeat about it all, but I thought when I was diagnosed that after I had my thyroid out I would be cured, just had to be checked every six months. Six years and two reoccurences later, I'm starting to doubt everything they've been telling me.

    If anyone out there would like to talk, please contact me. I need support now so bad you don't know.

    my story...
    Hello,
    I just discovered this thread and am thankful to finally find an active, current community of people on the same journey with hurthle cell. I am 34 and was diagnosed last april ('08) with a nearly 9cm tumor in my left thyroid and had a completion thyroidectomy a couple months later with no further cancer detected. I was pregnant with my daughter while the initial tumor was growing, so I didn't think anything of it. Once the rest of my body slimmed out and my neck was still huge, my doctor told me it was a goiter and to wait until i gained a bunch of weight and felt like a slug, and then he would put me on hormone meds... Needless to say, I found another doctor (though with a newborn i waited too long, several months) and they said they couldn't rule out cancer so I needed to have it removed surgically. I came in to get the stitches out and didn't even think about the results, assuming the worst was over. Then my surgeon broke the news that it was cancer. I took the results home and looked online and read about hurthle cell and it was pretty scary. At first it was like a cloud that hung over me, i was in shock and all these tragic thoughts would rain down and I had a hard time just continuing with normal life... I read the Psalms a lot and took refuge in trusting God's providence, and really felt God's presence in a sweet way in the midst of it all. Sometimes it was a major struggle not to let the really tragic thoughts bombard me, other times i felt at peace thinking through the reality of what it all might mean... Over time thoughts of the cancer became more in the background, not so much a constant companion.
    I did the 131 Radiation at UCSF in May '09 and all my tests/thyroglobulin tests were clear until an ultrasound a couple weeks ago. They found a lymph node that was slightly large on the last ultrasound, that had grown significantly again. So next week I will have a thyrogen CT/PET scan to check it out. And i have an appointment for a biopsy of the node in a few weeks. It is right next to my vocal chords and in an area with lots of vessels, so only my surgeon can do the biopsy. I'll repost once I have more info. I have already gone through the shock and grief from the original diagnosis, so it isn't near as scary as the first time. But it is disappointing, and brings those thoughts of "what if" back to the forefront...I guess with hurthle cell I will never be considered "cancer free" so in a way it will always be a companion. It makes every day precious and makes me think deeply about what is most important. So in some ways it is a gift. Anyhow, this is where I am at on the journey right now. Thank you to all of you who have read this and also shared your stories, there is something comforting about hearing others that are going through the same thing.

    If anyone wants to get in touch, i would love to talk to you. Here is my email: [email protected]

    blessings,
    christy
  • samanjan
    samanjan Member Posts: 40

    my story...
    Hello,
    I just discovered this thread and am thankful to finally find an active, current community of people on the same journey with hurthle cell. I am 34 and was diagnosed last april ('08) with a nearly 9cm tumor in my left thyroid and had a completion thyroidectomy a couple months later with no further cancer detected. I was pregnant with my daughter while the initial tumor was growing, so I didn't think anything of it. Once the rest of my body slimmed out and my neck was still huge, my doctor told me it was a goiter and to wait until i gained a bunch of weight and felt like a slug, and then he would put me on hormone meds... Needless to say, I found another doctor (though with a newborn i waited too long, several months) and they said they couldn't rule out cancer so I needed to have it removed surgically. I came in to get the stitches out and didn't even think about the results, assuming the worst was over. Then my surgeon broke the news that it was cancer. I took the results home and looked online and read about hurthle cell and it was pretty scary. At first it was like a cloud that hung over me, i was in shock and all these tragic thoughts would rain down and I had a hard time just continuing with normal life... I read the Psalms a lot and took refuge in trusting God's providence, and really felt God's presence in a sweet way in the midst of it all. Sometimes it was a major struggle not to let the really tragic thoughts bombard me, other times i felt at peace thinking through the reality of what it all might mean... Over time thoughts of the cancer became more in the background, not so much a constant companion.
    I did the 131 Radiation at UCSF in May '09 and all my tests/thyroglobulin tests were clear until an ultrasound a couple weeks ago. They found a lymph node that was slightly large on the last ultrasound, that had grown significantly again. So next week I will have a thyrogen CT/PET scan to check it out. And i have an appointment for a biopsy of the node in a few weeks. It is right next to my vocal chords and in an area with lots of vessels, so only my surgeon can do the biopsy. I'll repost once I have more info. I have already gone through the shock and grief from the original diagnosis, so it isn't near as scary as the first time. But it is disappointing, and brings those thoughts of "what if" back to the forefront...I guess with hurthle cell I will never be considered "cancer free" so in a way it will always be a companion. It makes every day precious and makes me think deeply about what is most important. So in some ways it is a gift. Anyhow, this is where I am at on the journey right now. Thank you to all of you who have read this and also shared your stories, there is something comforting about hearing others that are going through the same thing.

    If anyone wants to get in touch, i would love to talk to you. Here is my email: [email protected]

    blessings,
    christy

    samanjan
    Dear Christy,
    I have corresponded with you at your email address provided.
    Good luck with your upcoming test. It sounds as though you are now in good hands at UCSF.
    You have age in your favor even though your tumor was large. Positivity is key.
    I shall keep you in my thoughts.
    Elaine
  • BellsAngel69
    BellsAngel69 Member Posts: 104
    samanjan said:

    samanjan
    Dear BellsAngel69,
    Please call me on my cell which I will provide to you if you email me at: [email protected]

    samajan
    Thanks so much. My email is [email protected] I will contact you.

    Patti
  • persimmony
    persimmony Member Posts: 16
    samanjan said:

    samanjan
    Dear Christy,
    I have corresponded with you at your email address provided.
    Good luck with your upcoming test. It sounds as though you are now in good hands at UCSF.
    You have age in your favor even though your tumor was large. Positivity is key.
    I shall keep you in my thoughts.
    Elaine

    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?