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Hurthle Cell Carcinoma

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  • KCA12
    KCA12 Member Posts: 2
    Nocaliman said:

    Hi Pat,
    Scheduled for my

    Hi Pat,
    Scheduled for my body scan on Fri the 4th. As I've seen mentioned here already, Hurthle cell has a tendency not to uptake radioiodine so just because you have a clean scan doesn't mean your clean although it is protocol to do the I131 because it sometimes does work. After studying up on scans it looks like a PET scan is the one that will tell for sure if your cancer free. Going to ask my endo about that at my next appt. to see if he's going to schedule one for me. Seems by reading everyones posts every endo does things a little different. I didn't have any kind of scan prior to my 131 treatment.

    As far as the I131 treatment, it was no big deal at all. No side effects....no anything. Did freak me out a bit just to know that radiation was coursing through my body. But other than that I couldn't even tell I was going through a treatment.

    Insomnia? Pat......we've just had a recent diagnosis of the big C! I've had insomnia since the day of my diagnosis! The stress and fear is just unreal. I think that's pretty normal. For me it's getting better though and ambien helps somewhat with the sleeplessness. I just take one day at a time and hope for the best.

    Thank You for posting. As I said.....we are a very small group. Lets keep in touch.
    Chris

    Progress?
    Hi Chris,
    You haven't posted for two years. How are you doing? What has happened in the past few years? Have you learned more?
    I am 59 with Hurthle cell. Thyroid removed last week. It had metastasized in my bone first, which how we learned it was in the thyroid. Hope you are doing well, two years ahead of me!
  • IrishTheresa
    IrishTheresa Member Posts: 2

    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.

    Nexavar
    Hello Rebeccamae. Thank you very much for your reply. I have good news. My dad started on Nexavar nearly four weeks ago. After three weeks taking tablets twice a day, he returned to the oncologist and had all the same tests done.

    THE TREATMENT IS WORKING!

    After just three weeks! You could actually see on the lung xray where the tumours were getting smaller, and one seemed to have disappeared completely. We will know much more after he has a proper scan (mri or catscan?) at his next checkup, but for the moment it is just brilliant news for us. He is on the highest dose and so far the side effects are managable. He has days when he is too tired to move and other days when he is out tending his garden. Hopefully this will work for your husband too. I must google serafanib now! Please let me know how things are going with your husband. Hopefully both our lovely men will beat this horrible disease!
  • danjo2
    danjo2 Member Posts: 4

    Nexavar
    Hello Rebeccamae. Thank you very much for your reply. I have good news. My dad started on Nexavar nearly four weeks ago. After three weeks taking tablets twice a day, he returned to the oncologist and had all the same tests done.

    THE TREATMENT IS WORKING!

    After just three weeks! You could actually see on the lung xray where the tumours were getting smaller, and one seemed to have disappeared completely. We will know much more after he has a proper scan (mri or catscan?) at his next checkup, but for the moment it is just brilliant news for us. He is on the highest dose and so far the side effects are managable. He has days when he is too tired to move and other days when he is out tending his garden. Hopefully this will work for your husband too. I must google serafanib now! Please let me know how things are going with your husband. Hopefully both our lovely men will beat this horrible disease!

    Nexavar and Sutent treatment
    Hi, just a word of encouragement for all of you out there.
    My husband was diagnosed back in 2006. Went through all the wrong treatments at first
    Cancer spread to spine and lungs. Radioactive Iodine does not work, reg chemo does not work, after trying everything, went on Nexavar. That worked for a year and a half, next on Sutent. Been on that for 2 years and still doing well. Neck tumors have reduced and some have necrotized. Lungs still growing but at a very slow pace. Quality of life is good, some days great and others tired and sleepy, but for someone who was not to survive more than 6 months without treatment (now 6 years) doing great. Can actually still ride his harley once in a while! For all those trying these treatments, don't give up when the side effects seem unbearable. If all goes well, your system adapts and the side effects reduce (the palms and feet especially) Just tender skin now. I will you all the best and if everyone could have the same team of doctors that he has, you would all be around for a long time xxx
  • danjo2
    danjo2 Member Posts: 4

    Nexavar
    Hello Rebeccamae. Thank you very much for your reply. I have good news. My dad started on Nexavar nearly four weeks ago. After three weeks taking tablets twice a day, he returned to the oncologist and had all the same tests done.

    THE TREATMENT IS WORKING!

    After just three weeks! You could actually see on the lung xray where the tumours were getting smaller, and one seemed to have disappeared completely. We will know much more after he has a proper scan (mri or catscan?) at his next checkup, but for the moment it is just brilliant news for us. He is on the highest dose and so far the side effects are managable. He has days when he is too tired to move and other days when he is out tending his garden. Hopefully this will work for your husband too. I must google serafanib now! Please let me know how things are going with your husband. Hopefully both our lovely men will beat this horrible disease!

    Nexavar and Sutent treatment
    Hi, just a word of encouragement for all of you out there.
    My husband was diagnosed back in 2006. Went through all the wrong treatments at first
    Cancer spread to spine and lungs. Radioactive Iodine does not work, reg chemo does not work, after trying everything, went on Nexavar. That worked for a year and a half, next on Sutent. Been on that for 2 years and still doing well. Neck tumors have reduced and some have necrotized. Lungs still growing but at a very slow pace. Quality of life is good, some days great and others tired and sleepy, but for someone who was not to survive more than 6 months without treatment (now 6 years) doing great. Can actually still ride his harley once in a while! For all those trying these treatments, don't give up when the side effects seem unbearable. If all goes well, your system adapts and the side effects reduce (the palms and feet especially) Just tender skin now. I will you all the best and if everyone could have the same team of doctors that he has, you would all be around for a long time xxx
  • danjo2
    danjo2 Member Posts: 4

    Nexavar
    Hello Rebeccamae. Thank you very much for your reply. I have good news. My dad started on Nexavar nearly four weeks ago. After three weeks taking tablets twice a day, he returned to the oncologist and had all the same tests done.

    THE TREATMENT IS WORKING!

    After just three weeks! You could actually see on the lung xray where the tumours were getting smaller, and one seemed to have disappeared completely. We will know much more after he has a proper scan (mri or catscan?) at his next checkup, but for the moment it is just brilliant news for us. He is on the highest dose and so far the side effects are managable. He has days when he is too tired to move and other days when he is out tending his garden. Hopefully this will work for your husband too. I must google serafanib now! Please let me know how things are going with your husband. Hopefully both our lovely men will beat this horrible disease!

    Nexavar and Sutent treatment
    Hi, just a word of encouragement for all of you out there.
    My husband was diagnosed back in 2006. Went through all the wrong treatments at first
    Cancer spread to spine and lungs. Radioactive Iodine does not work, reg chemo does not work, after trying everything, went on Nexavar. That worked for a year and a half, next on Sutent. Been on that for 2 years and still doing well. Neck tumors have reduced and some have necrotized. Lungs still growing but at a very slow pace. Quality of life is good, some days great and others tired and sleepy, but for someone who was not to survive more than 6 months without treatment (now 6 years) doing great. Can actually still ride his harley once in a while! For all those trying these treatments, don't give up when the side effects seem unbearable. If all goes well, your system adapts and the side effects reduce (the palms and feet especially) Just tender skin now. I will you all the best and if everyone could have the same team of doctors that he has, you would all be around for a long time xxx
  • rebeccamae
    rebeccamae Member Posts: 7
    danjo2 said:

    Nexavar and Sutent treatment
    Hi, just a word of encouragement for all of you out there.
    My husband was diagnosed back in 2006. Went through all the wrong treatments at first
    Cancer spread to spine and lungs. Radioactive Iodine does not work, reg chemo does not work, after trying everything, went on Nexavar. That worked for a year and a half, next on Sutent. Been on that for 2 years and still doing well. Neck tumors have reduced and some have necrotized. Lungs still growing but at a very slow pace. Quality of life is good, some days great and others tired and sleepy, but for someone who was not to survive more than 6 months without treatment (now 6 years) doing great. Can actually still ride his harley once in a while! For all those trying these treatments, don't give up when the side effects seem unbearable. If all goes well, your system adapts and the side effects reduce (the palms and feet especially) Just tender skin now. I will you all the best and if everyone could have the same team of doctors that he has, you would all be around for a long time xxx

    Nexavar is working!!!
    My husband had a scan in June and he has no new tumors and none of the existing ones have grown! He currently has a mass on the back of his head, a lump on his neck, nodules in liver and lungs and a hole in skull and sacrum.
  • carnette
    carnette Member Posts: 2
    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
    Hello,
    I just read your post and I wonder how you are doing eight months later?
    I am a 55year old female and was diagnosed this year 2012,on July 17th, with a Benign Follicular nodule on my right side and Follicular neoplasm hurthle cell type on my left.
    I have so many questions! From all the posts I read, what the general consensus seems to be is that you don't get rid of this type of cancer...ever! Is that the case or is there anyone out there who has actually "beat" this thing? I am getting ahead of myself because I am told that it is impossible to determine if the hurthle cells are cancerous until they are surgically removed and tested, so I don't even know whether I have cancer or not. I was told that there is a 20-30% chance that I do not have cancer. That sounds good, but if I don't have cancer, then I want to keep my thyroid. So frustrating! I have heard that a PET SCAN will determine if it is cancer and if it has spread. Does anyone know about this?
    I have gone on a raw food diet and whole food supplements. I'm calling the ENT to schedule the surgery. I would like to be retested just before surgery to see if the nodules have changed. If they are smaller, then I would cancel the surgery, continue on my natural protocol and get ultrasounds and FNA every month to watch it. If they are larger or the same, then I will concede to having the surgery. Has anyone out there ever tried this sort of approach.
    I guess the most frustrating thing about this is that, from what I am picking up on, the PET SCAN could give a lot of much needed info, but because of the COST, the insurance companies don't want to pay for it. It seems as if Doctors automatically push surgery. That is the easy way out, but I believe God put the thyroid in my body for a reason and if it doesn't need to come out then it would be unprofessional to suggest otherwise. I want to know if I NEED surgery before I actually have it and if a PET SCAN can determine that then regardless of the COST, that is what they should recommend!
    Just venting and want to know if anyone thinks the same or if anyone has a thought about this.
    Thank you and by the way, I am a praying person, and when I read these posts, I do pray!
    Thank you so much and I hope to get many responses!
  • carnette
    carnette Member Posts: 2

    Nexavar is working!!!
    My husband had a scan in June and he has no new tumors and none of the existing ones have grown! He currently has a mass on the back of his head, a lump on his neck, nodules in liver and lungs and a hole in skull and sacrum.

    Hurthle Cell
    Hello,
    I just read your post and I wonder how you are doing eight months later?
    I am a 55year old female and was diagnosed this year 2012,on July 17th, with a Benign Follicular nodule on my right side and Follicular neoplasm hurthle cell type on my left.
    I have so many questions! From all the posts I read, what the general consensus seems to be is that you don't get rid of this type of cancer...ever! Is that the case or is there anyone out there who has actually "beat" this thing? I am getting ahead of myself because I am told that it is impossible to determine if the hurthle cells are cancerous until they are surgically removed and tested, so I don't even know whether I have cancer or not. I was told that there is a 20-30% chance that I do not have cancer. That sounds good, but if I don't have cancer, then I want to keep my thyroid. So frustrating! I have heard that a PET SCAN will determine if it is cancer and if it has spread. Does anyone know about this?
    I have gone on a raw food diet and whole food supplements. I'm calling the ENT to schedule the surgery. I would like to be retested just before surgery to see if the nodules have changed. If they are smaller, then I would cancel the surgery, continue on my natural protocol and get ultrasounds and FNA every month to watch it. If they are larger or the same, then I will concede to having the surgery. Has anyone out there ever tried this sort of approach.
    I guess the most frustrating thing about this is that, from what I am picking up on, the PET SCAN could give a lot of much needed info, but because of the COST, the insurance companies don't want to pay for it. It seems as if Doctors automatically push surgery. That is the easy way out, but I believe God put the thyroid in my body for a reason and if it doesn't need to come out then it would be unprofessional to suggest otherwise. I want to know if I NEED surgery before I actually have it and if a PET SCAN can determine that then regardless of the COST, that is what they should recommend!
    Just venting and want to know if anyone thinks the same or if anyone has a thought about this.
    Thank you and by the way, I am a praying person, and when I read these posts, I do pray!
    Thank you so much and I hope to get many responses!
  • marie.r
    marie.r Member Posts: 2
    Helpful blog with hurthle cell cancer journey information
    http://mslwc.blogspot.com/?m=1

    This blog by a man with hurthle cell cancer was very helpful to me. He does a great job of mapping out the journey. If the link doesn't work google "my short life with cancer hurthle cell" and it should pop up. He said he named it that because he plans to beat it in a short time.

    I am new to Hcc so please share information on how you are all doing now and any tips on genetic mapping of rumors or things I should be aware of starting this journey
  • smerth
    smerth Member Posts: 2
    marie.r said:

    Helpful blog with hurthle cell cancer journey information
    http://mslwc.blogspot.com/?m=1

    This blog by a man with hurthle cell cancer was very helpful to me. He does a great job of mapping out the journey. If the link doesn't work google "my short life with cancer hurthle cell" and it should pop up. He said he named it that because he plans to beat it in a short time.

    I am new to Hcc so please share information on how you are all doing now and any tips on genetic mapping of rumors or things I should be aware of starting this journey

    Thanks for the link
    Just finished reading most of his blog written over the last 5 years and it was very informative. Glad to know that someone is doing well against Hurthle Cell Carcinoma. His never left his neck - so great news! Mine on the other hand is on my bones, in my lung, and my adrenal gland. Not sure what's next but more blood work and PET scans will tell us more soon.
  • dhunt64817
    dhunt64817 Member Posts: 16

    post-op
    At my post-op visit, the surgeon reported no cancer in the left lobe. He removed an enlarged parathyroid gland; no lymph nodes. No invasion to blood vessels. Sounds good so far; still waiting to hear from the endocrinologist for a follow-up appointment and the next step. I'm still feeling quite sluggish after the surgery; or maybe it's the cytomel.

    no cancer in left lobe

        I have had a very similar case. I found a 4cm in my right thyroid. They removed it and it was cancer. They then removed my left lobe andd no cancer was foiund.

    Can you tell how you are today and what treatments you had following surgery.  Dave

  • dhunt64817
    dhunt64817 Member Posts: 16

    The nodule of the right lobe
    The nodule of the right lobe was 4.5 cm - pretty large. The surgeon said he found no cancer in the left lobe (second surgery) and it hadn't spread to the blood vessels. I, too, was in shock when I got the diagnosis from the surgeon at the post-op from the first surgery. No risk factors, no family history. And the fine needle aspiration and first surgery showed nothing.

    Off to the endocrinologist tomorrow to see what he has to say. Getting my questions prepared. This site and ThyCa.org are good sources of what to ask.

    Take care.

    Pat

    update on treatment

    i have a very similafr case. Can you tell what post operation treatment you had?

  • dhunt64817
    dhunt64817 Member Posts: 16

    The nodule of the right lobe
    The nodule of the right lobe was 4.5 cm - pretty large. The surgeon said he found no cancer in the left lobe (second surgery) and it hadn't spread to the blood vessels. I, too, was in shock when I got the diagnosis from the surgeon at the post-op from the first surgery. No risk factors, no family history. And the fine needle aspiration and first surgery showed nothing.

    Off to the endocrinologist tomorrow to see what he has to say. Getting my questions prepared. This site and ThyCa.org are good sources of what to ask.

    Take care.

    Pat

    update on treatment

    i have a very similar case. Can you tell what post operation treatment you had?

  • nessie421
    nessie421 Member Posts: 1
    smerth said:

    Thanks for the link
    Just finished reading most of his blog written over the last 5 years and it was very informative. Glad to know that someone is doing well against Hurthle Cell Carcinoma. His never left his neck - so great news! Mine on the other hand is on my bones, in my lung, and my adrenal gland. Not sure what's next but more blood work and PET scans will tell us more soon.

    Just got diagnosed with Hurthle cell cancer

    Glad to find this thread! I was just diagnosed with Hurthle cell cancer and have been looking for people since everyone says, "Oh, thyroid cancer! That is the good cancer! I knew <so and so> with thyroid cancer and they were just fine! You have nothing to worrry about!". I know people mean well and don't want to be a downer by saying, "Actually, my type of thyroid cancer is rare and more serious." My mother died of brain cancer, so in my mind cancer is synonymous with losing my mother. I am 32 years old and have a two year old daughter who is the light of my life. The thought of her growing up without her mother and me not seeing her grow up destroys me.

    Anyway, still getting over the shock and just quite angry now and ready to see if this motherf-er has spread and what to do. I had just a partial thyroidectomy three weeks ago as the FNA and slice checked during surgery were both negative, so I have to go back in at the end of May to get the other half taken out. I meet with a radiation oncologist in two weeks and with an endocrinologist specializing in thyroid cancer on May 10th.

    Anyone care to write back and give an update of how they're doing? I know I would really appreciate it! TIA

  • Jane16131
    Jane16131 Member Posts: 5
    nessie421 said:

    Just got diagnosed with Hurthle cell cancer

    Glad to find this thread! I was just diagnosed with Hurthle cell cancer and have been looking for people since everyone says, "Oh, thyroid cancer! That is the good cancer! I knew <so and so> with thyroid cancer and they were just fine! You have nothing to worrry about!". I know people mean well and don't want to be a downer by saying, "Actually, my type of thyroid cancer is rare and more serious." My mother died of brain cancer, so in my mind cancer is synonymous with losing my mother. I am 32 years old and have a two year old daughter who is the light of my life. The thought of her growing up without her mother and me not seeing her grow up destroys me.

    Anyway, still getting over the shock and just quite angry now and ready to see if this motherf-er has spread and what to do. I had just a partial thyroidectomy three weeks ago as the FNA and slice checked during surgery were both negative, so I have to go back in at the end of May to get the other half taken out. I meet with a radiation oncologist in two weeks and with an endocrinologist specializing in thyroid cancer on May 10th.

    Anyone care to write back and give an update of how they're doing? I know I would really appreciate it! TIA

    Hurthle Cell Carcinoma

    Hi Nessie!

    I'm so sorry about your diagnosis of Hurthle Cell Carcinoma, but the good thing is that you are 32 years old and the prognosis is way better for someone under 45 years old.  Hurthle Cell Carcinoma is usually a more aggressive type of thyroid cancer, but again your age and the fact that you are female are really good indicators for a good outcome. 

    In my opinion you need to go to a surgeon that does lots of thyroid cancer surgeries every year.  There aren't a lot of these guys around, so do your research to see if one is nearby. 

    My husband had a total thyroidectomy in October, but also had metastases to the lymph nodes.  He had 50 lymph nodes removed and 14 were cancerous.  He now has 8 nodules in both lungs, but he is a diabetic and the Pet Scan results were skewed because of it being sugar based.  We now have to wait until July for a CAT scan and a Thyrogen study to see if the nodules in his lungs are cancer and to find out if they are growing.  My husband's prognosis isn't great because of his age, so Nessie, keep a positive attitude and read as much as you can about your cancer.  It will give you an idea of what's next and understanding on why they are doing certain tests. 

    Good luck to you and enjoy that baby girl.

     

     

     

     

     

  • Shunterrn
    Shunterrn Member Posts: 1
    nessie421 said:

    Just got diagnosed with Hurthle cell cancer

    Glad to find this thread! I was just diagnosed with Hurthle cell cancer and have been looking for people since everyone says, "Oh, thyroid cancer! That is the good cancer! I knew <so and so> with thyroid cancer and they were just fine! You have nothing to worrry about!". I know people mean well and don't want to be a downer by saying, "Actually, my type of thyroid cancer is rare and more serious." My mother died of brain cancer, so in my mind cancer is synonymous with losing my mother. I am 32 years old and have a two year old daughter who is the light of my life. The thought of her growing up without her mother and me not seeing her grow up destroys me.

    Anyway, still getting over the shock and just quite angry now and ready to see if this motherf-er has spread and what to do. I had just a partial thyroidectomy three weeks ago as the FNA and slice checked during surgery were both negative, so I have to go back in at the end of May to get the other half taken out. I meet with a radiation oncologist in two weeks and with an endocrinologist specializing in thyroid cancer on May 10th.

    Anyone care to write back and give an update of how they're doing? I know I would really appreciate it! TIA

    Hurthle cell

    Hi,

     

    i just had a partial thyroidectomy done two days ago. I had a 4cm nodule on my left thyroid. Because of the size I skipped the fna. The doc did a frozen section and it came back as hurthle cells. The frozen was negative but I guess I have to wait for the final path report. I'm 31 and have to young children ages 3 and 14 months. How big was your nodule? I'm reading that size plays a role in hurthle cell cancer. I'm a little anxious

  • mhc4165
    mhc4165 Member Posts: 46
    Shunterrn said:

    Hurthle cell

    Hi,

     

    i just had a partial thyroidectomy done two days ago. I had a 4cm nodule on my left thyroid. Because of the size I skipped the fna. The doc did a frozen section and it came back as hurthle cells. The frozen was negative but I guess I have to wait for the final path report. I'm 31 and have to young children ages 3 and 14 months. How big was your nodule? I'm reading that size plays a role in hurthle cell cancer. I'm a little anxious

    Most benign nodules grow

    Most benign nodules grow too,and I have found *so* many people on thyroid and general health boards who had very large nodules,some with a lot of hurthle cells,and they were benign when removed.The size doesn't really tell you anything,it has more to do with when you found the nodules,either cancerous or benign. If the benign or cancerous nodules were found after only a few years from when they formed,they will be smaller when found,if they were found 10 years or more after they formed they both will be bigger. Many people have had papillary thyroid cancers found by accident that were 4,and 5mm and thyroid cancers 1cm,2cm,3cm,4cm,and many people have had benign nodules that were 1cm,2cm,3cm,etc and many of these people had normal thyroid function.

  • diana500blue
    diana500blue Member Posts: 2

    hurthle cell cancer
    I also have hurthle cell cancer and had a total thyroidectomy on 7/30. I feel good as far as the surgery went- no problems there. Now I will go for the radioactive iodine in six weeks. Has anyone done that? What were the results with the hurthle cell cancer- I mean, how well did the thyroid cells respond to treatment? I actually had my thyroid completely removed (due to hurthle cell adenomas) before I found out it was actually cancer. YESTERDAY is when I got the results. I am still in shock and my mind is running a mile a minute.

    Hurthle Cell Cancer

    Hurthle cell cancer does not respond well to RAI!!!  you might ask your oncologist about other options.

  • vixin
    vixin Member Posts: 1

    Hurthle Cell Cancer

    Hurthle cell cancer does not respond well to RAI!!!  you might ask your oncologist about other options.

    hurthle cell

    I have had total thyroidectomy, lymph gland and 2 parathyroid removed. I have had 131 and have seen oncologist once. 

    I have follicular hurthle and have very little if any support, which surprises me as it is a new cancer unit and a teaching hospital.  I have taken since may to get my calcium balanced and am taking enough for an elephant together with alphacalcidol.  GP and hospital agree on nothing. 

    I am getting nervous now because,I hope, I am due next scan in a few weeks.  I am hoping, but not expecting because of it being this varient, that it will have gone.  If it hasn't, then what? 

    I was in isolation for four days.  AndI have not been given access to an Endo which seems to make no sense. 

    Just to add to the joy of it all,I have had pe's and dvt and i am on warferin for life.  

    Also hadBasel cell skin cancer.   will RAI increase risk?

     

  • dunatuna
    dunatuna Member Posts: 4
    a-fib from thyroid supplement

    Anyone out there have a-fib caused by the thyroid supplements (Synthroid)?  I've had a heck of a time with it and am considering the a-fib ablation, but am not sure how well it works to control a-fib caused by the medicine.  I mean, I will still have to take the Synthroid.  Anybody else have the surgery?

  • lbird
    lbird Member Posts: 1

    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 cancer

    just found out that my father has this cancer and we are looking for a good physician. Can you please tell me the endo/physician that you have and who did the surgery and where he/she is located at. thanks

  • webteach51
    webteach51 Member Posts: 10

    hurthle cell cancer
    I also have hurthle cell cancer and had a total thyroidectomy on 7/30. I feel good as far as the surgery went- no problems there. Now I will go for the radioactive iodine in six weeks. Has anyone done that? What were the results with the hurthle cell cancer- I mean, how well did the thyroid cells respond to treatment? I actually had my thyroid completely removed (due to hurthle cell adenomas) before I found out it was actually cancer. YESTERDAY is when I got the results. I am still in shock and my mind is running a mile a minute.

    newly diagnosed Hurthle Cell Cancer Patient

    Having difficulty finding anyone who is currently on this site with Hurthle Cell Cancer and was wondering how you are doing and anything I need to know about this journey?

    Thanks,

    Sue

  • webteach51
    webteach51 Member Posts: 10
    KCA12 said:

    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!

    quick question about your Hurthle Cel

    When you had your bone removed and found out it was from Hurthle Cell Thyroid Cancer, how big were your turmors in your thyroid?

  • bclisa
    bclisa Member Posts: 1
    edited June 2019 #295

    newly diagnosed Hurthle Cell Cancer Patient

    Having difficulty finding anyone who is currently on this site with Hurthle Cell Cancer and was wondering how you are doing and anything I need to know about this journey?

    Thanks,

    Sue

    Hello Sue,

    Hello Sue,

    I had hurthle cell carcinoma in 2014.  I have been through the entire treatment from start to finish.  As of today, I am still cancer free without a trace of Thyroglobulin, which is what the goal is.  If you have any questions, please feel free to let me know.