Hurthle Cell Carcinoma

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Comments

  • loispol1
    loispol1 Member Posts: 84
    Sisu61 said:

    New to this
    Lois,

    I have been reading everyone's emails in this site and was recently diagnosed with Hurthle Cell thyroid cancer. Mine was 3.5 x 3.3 x 3.1 and took 3 hours to remove. They didn't find it was cancer until a week later and still have to go back in and now take the right side out in April. My TSH was 4.53 before surgery and 5.65 a couple weeks after so they started me on thyroid meds until the next surgery. I have been feeling really run down but have gotten some energy back. Lately have been feeling anxious and "snappy" at times. They also thought my thyroid was Hastimotos thyroiditis after they removed the left side. Still in the early stages of everything, needing the other surgery and then 3 weeks of the low iodine diet prior to RAI in June. I am concerned about my energy then and figuring out what I can eat. I work as a RN and work 12 hour shifts, of course hard to do without any energy.

    I hope things get better for you and you are right that this support discussion is very helpful. I have learned alot just from reading everyone's responses but still feel I don't know alot about this cancer. My endocrinologist researched Hurthle cell cancers when she worked at Mayo but said it was hard finding out any information since there were
    not many cases out there.

    Hope that energy returns soon.

    Karleen

    Hi Kathleen
    I am so grateful to have found this website and information about Hurthle cell cancer. I have spent over a week straight researching the subject and information is very sparse. I occasionally find helpful information only to find that some it contradicts the information I have been trying to find, which is, exactly what percentage of FNA Hurthle cell neoplasms turn out to be Hurthle cell carcinoma. I have read all different percentages. This would have been helpful information in making my decisions for surgery. The surgeon I am seeing said only 15 % but I have read recent it is higher, more like 30%. And then there are all the factors built into that.
    There is some good info. out there and I especially like what was written at emedicne and even the mayo website gives some basic helpful info. I ran out of ink again in my printer so I think my researching has come to an end. I went back to MDAnderson in Orlando yesterday and have made the date for my thyroid operation. Because of all my thyroid issues, supposed Hasimotos DX, my age which is 59 and all the nodules over 7, plus my medical condition - we decided to take the whole thyroid out the first time...which is what all the doctors i saw suggested. i have been on high dose thyroid medication since 1993 or so and my thyroid probably does not function on its own. I have severe allergies and when they treated me with compassion, kindness and offering precautions concerning the allergies I decided to hand the whole thing over to the experts there. I had thought of traveling to John Hopkins or elsewhere but i am just not well enough to do so. Although i am on thyroid medication I have little energy and do not feel well, i do have other medical problems. Anyway i hope i have made the right decision. I only had my thyroid FNA come back with the dx of Hurthe cell neoplasm. Today the surgeon is having me have another ultrasound of my thyroid and then my neck and possible FNA of neck lymph nodes if anything looks suspicious. I am truly afraid of surgery given my history of severe reactions to medications and breathing problems etc. I am going to have to get through this somehow. Part of me just wants the whole thing to go away; I keep thinking there is a percentage/chance, that I do not have cancer yet. I now this is a serious matter and I cannot afford to put off the surgery any longer. I am also allergic to iodine so there is that also which could be a problem later on.

    Anyway, everyone here has been super nice and helpful. They are all very courageous, by comparison I am truly lacking in that area currently. i am so sorry you are having to deal with this and also working so much. Did you take time off after your surgery, is it possible for you to take a medical leave until you are back on your feet, or maybe work less hours? Of course I don't know your situation, but I would think that now is a time you would not want to get run down. Thank you so much for your very kind and helpful note. I hope today was a little bit better for you than yesterday.

    Smiles,
    Lois
  • Sisu61
    Sisu61 Member Posts: 10
    loispol1 said:

    Hi Kathleen
    I am so grateful to have found this website and information about Hurthle cell cancer. I have spent over a week straight researching the subject and information is very sparse. I occasionally find helpful information only to find that some it contradicts the information I have been trying to find, which is, exactly what percentage of FNA Hurthle cell neoplasms turn out to be Hurthle cell carcinoma. I have read all different percentages. This would have been helpful information in making my decisions for surgery. The surgeon I am seeing said only 15 % but I have read recent it is higher, more like 30%. And then there are all the factors built into that.
    There is some good info. out there and I especially like what was written at emedicne and even the mayo website gives some basic helpful info. I ran out of ink again in my printer so I think my researching has come to an end. I went back to MDAnderson in Orlando yesterday and have made the date for my thyroid operation. Because of all my thyroid issues, supposed Hasimotos DX, my age which is 59 and all the nodules over 7, plus my medical condition - we decided to take the whole thyroid out the first time...which is what all the doctors i saw suggested. i have been on high dose thyroid medication since 1993 or so and my thyroid probably does not function on its own. I have severe allergies and when they treated me with compassion, kindness and offering precautions concerning the allergies I decided to hand the whole thing over to the experts there. I had thought of traveling to John Hopkins or elsewhere but i am just not well enough to do so. Although i am on thyroid medication I have little energy and do not feel well, i do have other medical problems. Anyway i hope i have made the right decision. I only had my thyroid FNA come back with the dx of Hurthe cell neoplasm. Today the surgeon is having me have another ultrasound of my thyroid and then my neck and possible FNA of neck lymph nodes if anything looks suspicious. I am truly afraid of surgery given my history of severe reactions to medications and breathing problems etc. I am going to have to get through this somehow. Part of me just wants the whole thing to go away; I keep thinking there is a percentage/chance, that I do not have cancer yet. I now this is a serious matter and I cannot afford to put off the surgery any longer. I am also allergic to iodine so there is that also which could be a problem later on.

    Anyway, everyone here has been super nice and helpful. They are all very courageous, by comparison I am truly lacking in that area currently. i am so sorry you are having to deal with this and also working so much. Did you take time off after your surgery, is it possible for you to take a medical leave until you are back on your feet, or maybe work less hours? Of course I don't know your situation, but I would think that now is a time you would not want to get run down. Thank you so much for your very kind and helpful note. I hope today was a little bit better for you than yesterday.

    Smiles,
    Lois

    Hi Lois
    Lois,

    Just got back from hematology and found my hemoglobin is back up to 10.9. It had dropped to 9 after taking out the left side of my thyroid. I will have my right side removed on April 16th. My biopsy also came back as a Hurthle cell neoplasm. The pathology took a week, as Hurthle cells are hard for the lab, and then it came back as Hurthle cell cancer. Since it was past the week of the original surgery they had to wait 2 months to take the rest out. I can understand it because my throat was so swollen, couldn't eat anything but liquids for a week after the first surgery and still felt like it was hard to breath at times.

    I am looking into leave of absence after the next surgery and around the time of the RAI. Unfortunately I have to work. I get child support for my kids but one will be done in another year and the other one is a sophomore. He left me alot of debt and still trying to climb out of the hole. Plus he rarely sees the kids. The costs of all this are not helping. My first hospital bill was over 27k and I have to pay $1,900. I was a stay at home mom once the kids were born and had to go back to work after the divorce. Being a nurse helps where you don't have to work 40 hours a week but the 12 hour shifts are killers. I have talked to my boss about going down to 8 hours after surgery and she was open to that. It helps having a great and understanding boss. I have only worked at the hospital for 10 years but love it there. I really can have apathy for my patients now when they feel short of breath etc.

    Will all your allergies and health issues, that has to be scary. Especially when you were talking about the breathing issue and it is going to get swollen around your windpipe when removing the thyroid. I am only 48, going to be 49 this summer, and have never had health issues besides arthritis in the knees and now tennis elbow from lifting patients. Things have to get better! It is shocking when you hear the word cancer and it is hard to fight when you feel tired and weak. I have seen many fighters in the hospital I work in and they help push me on. We do alot of bone marrow transplants and those people are something. To be able to put them through what they have to go through and being stuck in that hospital room for months sometimes. I couldn't do that, but then I guess you can do anything when you need to.

    What was that song years ago, "No Worries, Be Happy Now".

    Karleen
  • loispol1
    loispol1 Member Posts: 84
    Sisu61 said:

    Hi Lois
    Lois,

    Just got back from hematology and found my hemoglobin is back up to 10.9. It had dropped to 9 after taking out the left side of my thyroid. I will have my right side removed on April 16th. My biopsy also came back as a Hurthle cell neoplasm. The pathology took a week, as Hurthle cells are hard for the lab, and then it came back as Hurthle cell cancer. Since it was past the week of the original surgery they had to wait 2 months to take the rest out. I can understand it because my throat was so swollen, couldn't eat anything but liquids for a week after the first surgery and still felt like it was hard to breath at times.

    I am looking into leave of absence after the next surgery and around the time of the RAI. Unfortunately I have to work. I get child support for my kids but one will be done in another year and the other one is a sophomore. He left me alot of debt and still trying to climb out of the hole. Plus he rarely sees the kids. The costs of all this are not helping. My first hospital bill was over 27k and I have to pay $1,900. I was a stay at home mom once the kids were born and had to go back to work after the divorce. Being a nurse helps where you don't have to work 40 hours a week but the 12 hour shifts are killers. I have talked to my boss about going down to 8 hours after surgery and she was open to that. It helps having a great and understanding boss. I have only worked at the hospital for 10 years but love it there. I really can have apathy for my patients now when they feel short of breath etc.

    Will all your allergies and health issues, that has to be scary. Especially when you were talking about the breathing issue and it is going to get swollen around your windpipe when removing the thyroid. I am only 48, going to be 49 this summer, and have never had health issues besides arthritis in the knees and now tennis elbow from lifting patients. Things have to get better! It is shocking when you hear the word cancer and it is hard to fight when you feel tired and weak. I have seen many fighters in the hospital I work in and they help push me on. We do alot of bone marrow transplants and those people are something. To be able to put them through what they have to go through and being stuck in that hospital room for months sometimes. I couldn't do that, but then I guess you can do anything when you need to.

    What was that song years ago, "No Worries, Be Happy Now".

    Karleen

    Hi Karleen
    I am behind of all of you still needing to have my surgery. I just read a really good review about MDAnderson in Texas, and that made me feel better about going to the one in Orlando as they coordinate patient treatment plans. I was a single parent with a pain ex who made my life more difficult. It was really tough especially financially, so I do understand! Glad you have an understanding boss! I have been through some very hellish freaky extremely painful times as a very ill person. I have a real fear of ever becoming that ill again! Not being able to breath always makes me feel scared, with the asthma and throat swelling at times, guess it is best not to talk about it right now. It is one of the worst feelings, but so is extreme pain.

    If your hemoglobin dropped, what does that mean you were anemic? The lump in the front of my neck is uncomfortable and coming back now (they drained the part that was liquid). Well I have to get ready for my hour+ trip to Orlando, I don't want to be late! Thanks for writing me. This seems to be the best place I can find for support and answers, referrals, treatment recommendations etc! I am so glad I found it!
    Take care & smiles,
    Lois
  • loispol1
    loispol1 Member Posts: 84
    samanjan said:

    loispol1
    First, let me say this, most hurthle cell, actually thyroid cancer, is found inadvertently. It is referred to as the accidental type cancer. Usually they are looking for something else. In my case I had a huge tumor,which I found.
    It is aggressive, recurrent,and sneaky.
    I cannot believe you have not had an ultrasound. That should have been the first thing, not FNA. YOU are your own best health advocate.
    Are you able to travel for treatment in another state?
    Write me at [email protected] for numbers for the following:
    referral-Dr. Dave Cooper, Johns Hopkins, Chief of Endocrinology - secretary, Chrissy
    Surgeon - Chief of Endocrine surgery - Dr. Martha Zeiger. Her secretary is Catherine.
    Elaine

    Hi Elaine!
    How are you doing and how is your mother? I went back to MDAnderson yesterday and today but now I am wondering it I should make the effort and travel for another opinion as this could be so serious, I do want to be sure the surgery is done right etc. I had an ultrasound of my neck and thyroid again today over in Orlando. I did not have to have the FNA of lymph nodes but I was also unimpressed compared with the radilogy department over at Moffitt. Seems where one facility is lacking the other was great. The Orlando surgeon said 15 per cent chance of hurthle cell carcinoma from FNA, but this is not what I have been reading, especially with the report I received. What is your opinion concerning the percentages? Anyway thanks again for your help and hope all is still well with you!

    Anyway, I would love to hear from you again & smiles!
    Lois
  • loispol1
    loispol1 Member Posts: 84
    samanjan said:

    loispol1
    First, let me say this, most hurthle cell, actually thyroid cancer, is found inadvertently. It is referred to as the accidental type cancer. Usually they are looking for something else. In my case I had a huge tumor,which I found.
    It is aggressive, recurrent,and sneaky.
    I cannot believe you have not had an ultrasound. That should have been the first thing, not FNA. YOU are your own best health advocate.
    Are you able to travel for treatment in another state?
    Write me at [email protected] for numbers for the following:
    referral-Dr. Dave Cooper, Johns Hopkins, Chief of Endocrinology - secretary, Chrissy
    Surgeon - Chief of Endocrine surgery - Dr. Martha Zeiger. Her secretary is Catherine.
    Elaine

    Hi Elaine!
    How are you doing and how is your mother? I went back to MDAnderson yesterday and today but now I am wondering it I should make the effort and travel for another opinion as this could be so serious, I do want to be sure the surgery is done right etc. I had an ultrasound of my neck and thyroid again today over in Orlando. I did not have to have the FNA of lymph nodes but I was also unimpressed compared with the radilogy department over at Moffitt. Seems where one facility is lacking the other was great. The Orlando surgeon said 15 per cent chance of hurthle cell carcinoma from FNA, but this is not what I have been reading, especially with the report I received. What is your opinion concerning the percentages? Anyway thanks again for your help and hope all is still well with you!

    Anyway, I would love to hear from you again & smiles!
    Lois
  • loispol1
    loispol1 Member Posts: 84
    samanjan said:

    loispol1
    First, let me say this, most hurthle cell, actually thyroid cancer, is found inadvertently. It is referred to as the accidental type cancer. Usually they are looking for something else. In my case I had a huge tumor,which I found.
    It is aggressive, recurrent,and sneaky.
    I cannot believe you have not had an ultrasound. That should have been the first thing, not FNA. YOU are your own best health advocate.
    Are you able to travel for treatment in another state?
    Write me at [email protected] for numbers for the following:
    referral-Dr. Dave Cooper, Johns Hopkins, Chief of Endocrinology - secretary, Chrissy
    Surgeon - Chief of Endocrine surgery - Dr. Martha Zeiger. Her secretary is Catherine.
    Elaine

    Hi Elaine!
    How are you doing and how is your mother? I went back to MDAnderson yesterday and today but now I am wondering it I should make the effort and travel for another opinion as this could be so serious, I do want to be sure the surgery is done right etc. I had an ultrasound of my neck and thyroid again today over in Orlando. I did not have to have the FNA of lymph nodes but I was also unimpressed compared with the radilogy department over at Moffitt. Seems where one facility is lacking the other was great. The Orlando surgeon said 15 per cent chance of hurthle cell carcinoma from FNA, but this is not what I have been reading, especially with the report I received. What is your opinion concerning the percentages? Anyway thanks again for your help and hope all is still well with you!

    Anyway, I would love to hear from you again & smiles!
    Lois
  • Sisu61
    Sisu61 Member Posts: 10
    loispol1 said:

    Hi Karleen
    I am behind of all of you still needing to have my surgery. I just read a really good review about MDAnderson in Texas, and that made me feel better about going to the one in Orlando as they coordinate patient treatment plans. I was a single parent with a pain ex who made my life more difficult. It was really tough especially financially, so I do understand! Glad you have an understanding boss! I have been through some very hellish freaky extremely painful times as a very ill person. I have a real fear of ever becoming that ill again! Not being able to breath always makes me feel scared, with the asthma and throat swelling at times, guess it is best not to talk about it right now. It is one of the worst feelings, but so is extreme pain.

    If your hemoglobin dropped, what does that mean you were anemic? The lump in the front of my neck is uncomfortable and coming back now (they drained the part that was liquid). Well I have to get ready for my hour+ trip to Orlando, I don't want to be late! Thanks for writing me. This seems to be the best place I can find for support and answers, referrals, treatment recommendations etc! I am so glad I found it!
    Take care & smiles,
    Lois

    Hope your trip went well
    Hope your trip went well Lois. I can't imagine driving that far for anything! I will drive up north to see my parents but that is a 3 1/2 hour trip. I live in the Twin Cities of MN and they live up on the Iron Range. My doctor found my enlarged thyroid and that I had iron deficiency anemia all at the same time. Have been taking Iron to get it up but then lost a unit of blood when I had my surgery which dipped it to 9. Now I am back up to 10.9, which is higher then when they found it so the Iron pills are working. My endocrinologist also found I was vitamin D deficient, which doesn't surprise me since I work the night shift. Need that sunshine, which is also hard sometimes in Minnesota.

    Support is important. Sometimes I feel all alone, I have siblings near by but they are busy with their own lives as is everyone else. Sometimes you just need to talk to someone. I am involved with my younger sons sports but basketball just finished and I usually don't go to track meets. They last forever. This summer he does baseball which I usually help with coaching and scorebook. Hopefully I will feel up to it this summer.

    Take care,

    Karleen
  • loispol1
    loispol1 Member Posts: 84
    samanjan said:

    loispol1
    Too many questions?????????? You must be kidding. I would find a new doctor asap. I have allergies as well.
    I go to Hopkins for treatment and live in south Florida.
    I have also read medical textbooks and if there is a predominance of Hurthle cells, you need a surgeon right away. Any mention in your pathology report about colloidal cells?
    If you need a referral I will try to get you some help.
    My personal opinion is this, if interested, keep looking for someone else.

    Hey, are you around?
    I am trying to get through this medical maze. I am almost recovered from my personal bad experience at Mofit. I can't remember everything you told me before, as I was in a medical "stupor". I am now scheduled for surgery at MDAnderson Orlando. I think the surgeon is very good but not sure of the Orlando Regional medical system which does all the testing - pathology reports? I do not have your phone number and would love to call you back. I still have time to make additional decisions?

    I wish "time" was not such a factor in all of Hurthle stuff!
  • samanjan
    samanjan Member Posts: 40
    loispol1 said:

    Hi Kathleen
    I am so grateful to have found this website and information about Hurthle cell cancer. I have spent over a week straight researching the subject and information is very sparse. I occasionally find helpful information only to find that some it contradicts the information I have been trying to find, which is, exactly what percentage of FNA Hurthle cell neoplasms turn out to be Hurthle cell carcinoma. I have read all different percentages. This would have been helpful information in making my decisions for surgery. The surgeon I am seeing said only 15 % but I have read recent it is higher, more like 30%. And then there are all the factors built into that.
    There is some good info. out there and I especially like what was written at emedicne and even the mayo website gives some basic helpful info. I ran out of ink again in my printer so I think my researching has come to an end. I went back to MDAnderson in Orlando yesterday and have made the date for my thyroid operation. Because of all my thyroid issues, supposed Hasimotos DX, my age which is 59 and all the nodules over 7, plus my medical condition - we decided to take the whole thyroid out the first time...which is what all the doctors i saw suggested. i have been on high dose thyroid medication since 1993 or so and my thyroid probably does not function on its own. I have severe allergies and when they treated me with compassion, kindness and offering precautions concerning the allergies I decided to hand the whole thing over to the experts there. I had thought of traveling to John Hopkins or elsewhere but i am just not well enough to do so. Although i am on thyroid medication I have little energy and do not feel well, i do have other medical problems. Anyway i hope i have made the right decision. I only had my thyroid FNA come back with the dx of Hurthe cell neoplasm. Today the surgeon is having me have another ultrasound of my thyroid and then my neck and possible FNA of neck lymph nodes if anything looks suspicious. I am truly afraid of surgery given my history of severe reactions to medications and breathing problems etc. I am going to have to get through this somehow. Part of me just wants the whole thing to go away; I keep thinking there is a percentage/chance, that I do not have cancer yet. I now this is a serious matter and I cannot afford to put off the surgery any longer. I am also allergic to iodine so there is that also which could be a problem later on.

    Anyway, everyone here has been super nice and helpful. They are all very courageous, by comparison I am truly lacking in that area currently. i am so sorry you are having to deal with this and also working so much. Did you take time off after your surgery, is it possible for you to take a medical leave until you are back on your feet, or maybe work less hours? Of course I don't know your situation, but I would think that now is a time you would not want to get run down. Thank you so much for your very kind and helpful note. I hope today was a little bit better for you than yesterday.

    Smiles,
    Lois

    loispol1
    Just returned from Johns Hpkins yesterday after a week. If you need me, contact me at [email protected]
    Best of luck and I look forward to hearing from you!
  • weberdns
    weberdns Member Posts: 154
    loispol1 said:

    Hi Kathleen
    I am so grateful to have found this website and information about Hurthle cell cancer. I have spent over a week straight researching the subject and information is very sparse. I occasionally find helpful information only to find that some it contradicts the information I have been trying to find, which is, exactly what percentage of FNA Hurthle cell neoplasms turn out to be Hurthle cell carcinoma. I have read all different percentages. This would have been helpful information in making my decisions for surgery. The surgeon I am seeing said only 15 % but I have read recent it is higher, more like 30%. And then there are all the factors built into that.
    There is some good info. out there and I especially like what was written at emedicne and even the mayo website gives some basic helpful info. I ran out of ink again in my printer so I think my researching has come to an end. I went back to MDAnderson in Orlando yesterday and have made the date for my thyroid operation. Because of all my thyroid issues, supposed Hasimotos DX, my age which is 59 and all the nodules over 7, plus my medical condition - we decided to take the whole thyroid out the first time...which is what all the doctors i saw suggested. i have been on high dose thyroid medication since 1993 or so and my thyroid probably does not function on its own. I have severe allergies and when they treated me with compassion, kindness and offering precautions concerning the allergies I decided to hand the whole thing over to the experts there. I had thought of traveling to John Hopkins or elsewhere but i am just not well enough to do so. Although i am on thyroid medication I have little energy and do not feel well, i do have other medical problems. Anyway i hope i have made the right decision. I only had my thyroid FNA come back with the dx of Hurthe cell neoplasm. Today the surgeon is having me have another ultrasound of my thyroid and then my neck and possible FNA of neck lymph nodes if anything looks suspicious. I am truly afraid of surgery given my history of severe reactions to medications and breathing problems etc. I am going to have to get through this somehow. Part of me just wants the whole thing to go away; I keep thinking there is a percentage/chance, that I do not have cancer yet. I now this is a serious matter and I cannot afford to put off the surgery any longer. I am also allergic to iodine so there is that also which could be a problem later on.

    Anyway, everyone here has been super nice and helpful. They are all very courageous, by comparison I am truly lacking in that area currently. i am so sorry you are having to deal with this and also working so much. Did you take time off after your surgery, is it possible for you to take a medical leave until you are back on your feet, or maybe work less hours? Of course I don't know your situation, but I would think that now is a time you would not want to get run down. Thank you so much for your very kind and helpful note. I hope today was a little bit better for you than yesterday.

    Smiles,
    Lois

    I had a Hurthle Cell Neoplasm
    But eneded up with Follicular Cancer of the Thyroid. Studies that I have read say that it is between 30 - 45% malignant, but don't say how many of them are Hurthle cell cancers. The best way to find out is to have it removed and a dissection biopsy done! Hugs as you go through this!
  • sfl67
    sfl67 Member Posts: 55
    samanjan said:

    loispol1
    Just returned from Johns Hpkins yesterday after a week. If you need me, contact me at [email protected]
    Best of luck and I look forward to hearing from you!

    samanjan
    I was diagnosed in July 09 with Hurthle Cell Carcinoma, stage 3 and would like to correspond with you if that is possible. I am very interested in your visit to Johns Hopkins and your overall experience with this cancer.

    Thank you,
    Shelia
  • samanjan
    samanjan Member Posts: 40
    sfl67 said:

    samanjan
    I was diagnosed in July 09 with Hurthle Cell Carcinoma, stage 3 and would like to correspond with you if that is possible. I am very interested in your visit to Johns Hopkins and your overall experience with this cancer.

    Thank you,
    Shelia

    sfl67
    Please feel free to write me at my email address: [email protected]
    I am also stage III. It is easier to deal with this if you think of this type of cancer like you would think of Herpes. It is a gift that keeps on giving and never really goes away. It may hibernate for awhile, but it's usually there. It has a possible shelf life of 15 years. I have had over one year to research and it's not that "good" type of thyroid cancer. Best not to dwell on it, rather deal with it. Stay in the moment too!
    Hopkins is awesome and I cannot say enough positive things about my experience there.
    I just returned Saturday after spending one week there for various treatments.
    I look forward to hearing from you.
    Elaine
  • samanjan
    samanjan Member Posts: 40
    weberdns said:

    I had a Hurthle Cell Neoplasm
    But eneded up with Follicular Cancer of the Thyroid. Studies that I have read say that it is between 30 - 45% malignant, but don't say how many of them are Hurthle cell cancers. The best way to find out is to have it removed and a dissection biopsy done! Hugs as you go through this!

    weberdns
    Can you post your pathology findings and let me review?
    Hurthle cell cancer can ONLE be made after a removal of the thyroid and final pathology report.
  • samanjan
    samanjan Member Posts: 40
    weberdns said:

    I had a Hurthle Cell Neoplasm
    But eneded up with Follicular Cancer of the Thyroid. Studies that I have read say that it is between 30 - 45% malignant, but don't say how many of them are Hurthle cell cancers. The best way to find out is to have it removed and a dissection biopsy done! Hugs as you go through this!

    weberdns
    Can you post your pathology findings and let me review?
    Hurthle cell cancer can ONLY be made after a removal of the thyroid and final pathology report.
  • weberdns
    weberdns Member Posts: 154
    samanjan said:

    weberdns
    Can you post your pathology findings and let me review?
    Hurthle cell cancer can ONLE be made after a removal of the thyroid and final pathology report.

    Final Pathology Report
    Final Diagnosis:
    Thyroid Gland Left Lobe Lobectomy 6 gms
    A. Follicular Oncocytic Carcinoma (Hurthle Cell Carcinoma), 1.5 CM's with Capsular and Extensive Vascular Invasion (See comment)
    B. Extrathyroidal extension is Absent
    C. Metastatic Follicular Oncocytic Carcinoma in one of 3 lymph nodes
    D. Normocellular Parathyroid Tissue
    E. Tumor Present at the inked (green ) Margin of the Resection (capsular surface
    F. AJCC Ptthologice TNM Stage pT1N1aMx

    Comment: As indicated above the 1.5 cm left thyroid lobe nodule represents an oncocytic follicular carcinomal with capsular and vascular invasion. The presence of vascular invastion is confirmed by immunohistochemical staining for CD31 preformed on blocks C and E. The <0.1 focus of metastatic carcinoma on one parithyroid lymph node is best appreciated on teh H & E recut and CD31 Immunohistiochemical stains preformed.
  • samanjan
    samanjan Member Posts: 40
    samanjan said:

    weberdns
    Can you post your pathology findings and let me review?
    Hurthle cell cancer can ONLY be made after a removal of the thyroid and final pathology report.

    weberdns
    The T1 sounds good, but I would keep an eye on the N1.
    Was any HCC found inside?
    Finding anything inside a lymph on presentation should put you on high alert for the follow -ups. Otherwise it looks geat!
    All the best,
    Elaine
  • weberdns
    weberdns Member Posts: 154
    samanjan said:

    weberdns
    The T1 sounds good, but I would keep an eye on the N1.
    Was any HCC found inside?
    Finding anything inside a lymph on presentation should put you on high alert for the follow -ups. Otherwise it looks geat!
    All the best,
    Elaine

    Hcc inside
    Not sure what that means???? Can you explain! Still have to have the body scen for mets........ also to see if theh Herthle cell will take up iodine. Visit to endo's office was pretty discouraging right now. She is most concerned about it being very vascular,that I am above 45 and it was not encapsulated.
  • samanjan
    samanjan Member Posts: 40
    weberdns said:

    Hcc inside
    Not sure what that means???? Can you explain! Still have to have the body scen for mets........ also to see if theh Herthle cell will take up iodine. Visit to endo's office was pretty discouraging right now. She is most concerned about it being very vascular,that I am above 45 and it was not encapsulated.

    weberdns
    All I was asking was this, any hurthle cells found inside the lymph node as noted on the TNM stage factor?
    T1N1, etc.
  • weberdns
    weberdns Member Posts: 154
    samanjan said:

    weberdns
    All I was asking was this, any hurthle cells found inside the lymph node as noted on the TNM stage factor?
    T1N1, etc.

    Yes
    1 lymph node out of 3. <0.1 cm in size. The surgeon did not feel that it was inside the lymph node itself, but on the surface and caused by frictional contact with the tumor.
  • BellsAngel69
    BellsAngel69 Member Posts: 104
    loispol1 said:

    Hi Patti!
    Yes, she is great and I actually was so stressed out i didn't remeber her name! I thought of going to John Hopkins and i may still in the future. I went back to MDAnderson in Orlando and after my bad experience over in Tampa recently and my total exhaustion and also being single and alone, I decided to go with the surgeon in Orlando. He apparantly is gifted and was very kind and concerned yesterday and brought his staff in to meet me and reassure me they would be taking every precaution with my allergies. The Orlando MDAnderson works with the University of Texas MDAnderson with conference calling and treatment recommendations. Apparantly every case goes throuhg this. If they can't be treated with something in Orlando then a patient is sent down to the Texas facility. Anyway I am not well enough to travel by myslef right now for surgery and with everything considered, I feel this surgeon (ear, nose and throat) is very knowledeable and careful. He is actually very concerned with the lump on the isthmus (shows on my neck) althought that area came back beign. Today he is having more ultrasounds done of my thyroid and neck and possible neck lymph node biopsy if indicated. I feel good that he is doing this. I will have another app't with him and then all the testing and anestetholgist about a week before and I hope to have anestehsia testing done by my allergist in the mean time. This facility is latex free which is a blessing for me, as allergic as I am.

    Sounds crazy but i am more afraid of the operation-that is the anesthesia and my allergies than anything else. Are you going to JH soon? It seem that is the best place or one of the best places to go with Hurthle cell.

    Hi Lois
    I'm glad you finally found a surgeon you are comfortable with. No matter how scared of surgery you are, you have to have faith everything will be ok. You have to go in positive and stay positive. You need a TT, no way around it. I can almost guarantee you, after your surgery and RAI treatment, once they get your meds adjusted right, you will feel 100% better. You seem to have many things going on at once, not just HCC, but Hashimoto's too. With your thyroid gone, you will have a clean slate. You may be surprised and find you'll feel better than you have in years.

    I'm not saying it's going to be smooth sailing all the way as it will take time to adjust your meds, but you will get there.

    I'm 9 days post surgery for a liver resection. My HCC first went to my hip bone, then my liver, and there was nothing I could do to stop it. I just pray now that it is in remission for a very long time.

    My email is: [email protected] if you'd like to talk more person to person.


    Stay strong, you can beat this!!!