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Hurthle Cell Carcinoma

rebeccamae
rebeccamae Member Posts: 7
edited March 2014 in Thyroid Cancer #1
Is there anyone out there with Hurthle Cell thyroid cancer?
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Comments

  • pfmerriell
    pfmerriell Member Posts: 22
    On July 2 I had a partial
    On July 2 I had a partial thyroidectomy for a large nodule on the right lobe. It tested positive for Hurthle Cell Carcinoma. On July 16, the surgeon removed the rest of the thyroid and some lymph nodes. I will get those reports at my post-op visit on Wednesday. After that, I guess it's back to the endocrinologist to see what's next.
  • dockman32
    dockman32 Member Posts: 1
    Hurthle Cell Carcinoma
    Yes.but apparently not a whole lot of us.
  • pfmerriell
    pfmerriell Member Posts: 22
    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.
  • sr_mccreery
    sr_mccreery Member Posts: 12

    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.

    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.
  • sr_mccreery
    sr_mccreery Member Posts: 12
    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..... :)
  • pfmerriell
    pfmerriell Member Posts: 22

    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..... :)

    I am just a little bit ahead
    I am just a little bit ahead of you in terms of treatment. And I'm still in the "can't quite believe this is happening" stage. I have always been very healthy - hardly ever even get a cold; never had any surgeries, etc. So, this is quite a shock. On top of that, my business partner and very good friend was diagnosed just a year ago with terminal lung cancer.

    I had my thyroid removed in two surgeries, July 2 and July 16. After going off the thyroid replacement and going on a low iodine diet, I will have my radioactive iodine treatment Sept 8. I hope to know a lot more after Monday when I see my endocrinologist. A good friend is going with me and we are preparing a long list of questions.

    I wish I had more to tell you. Right now I'm feeling pretty good. My energy level is high, but I'm having a lot of trouble sleeping.
    I am on cytomel twice a day. I am worried that the radio-iodine doesn't always work with Hurthle Cell; and worried about the side effects of the treatment.
  • sr_mccreery
    sr_mccreery Member Posts: 12

    I am just a little bit ahead
    I am just a little bit ahead of you in terms of treatment. And I'm still in the "can't quite believe this is happening" stage. I have always been very healthy - hardly ever even get a cold; never had any surgeries, etc. So, this is quite a shock. On top of that, my business partner and very good friend was diagnosed just a year ago with terminal lung cancer.

    I had my thyroid removed in two surgeries, July 2 and July 16. After going off the thyroid replacement and going on a low iodine diet, I will have my radioactive iodine treatment Sept 8. I hope to know a lot more after Monday when I see my endocrinologist. A good friend is going with me and we are preparing a long list of questions.

    I wish I had more to tell you. Right now I'm feeling pretty good. My energy level is high, but I'm having a lot of trouble sleeping.
    I am on cytomel twice a day. I am worried that the radio-iodine doesn't always work with Hurthle Cell; and worried about the side effects of the treatment.

    my story...
    Thanks for filling me in on your situation. I am sorry to hear about it, but I must say it makes me feel a little better knowing that I am not alone out there. I hope that's not coming across as rude, I don't mean to be... I just need someone to talk to who is in my boat. I am guessing you are a female? I am a 38 year old mother of three.... I didn't even know that I had any nodules- my primary care doctor suspected problems with my thyroid... then onto sonograms, FNA's, total thyroidectomy, cancer.... it is just unreal. I just began synthroid yesterday. What is cytomel? Is it a form of thyroid hormone or is it the med. that keeps you from getting such severe symptoms prior to the radioactive iodine treatment? The info. out there on our type of cancer and the iodine treatment makes me nervous- I just want to be told for sure that after the iodine, the cancer will be gone but obviously that won't happen- the waiting and wondering are frightening. You are like a week or two ahead of me- my iodine treatment is Sept 18th. I just saw the endo. yesterday, but I didn't have even a single question because I was so stunned. Please let me know what you find out when you and your friend go, and I will keep you posted on anything I hear. Where are you? I live in MD. Also, I am sorry about the run-on paragraphs.... my enter key doesn't work and trust me, that is a pain in the butt! :) Good luck and thank you for listening :)
  • pfmerriell
    pfmerriell Member Posts: 22
    Good morning.
    I am a 58 year

    Good morning.
    I am a 58 year old divorced mother of two grown sons. My younger son returned to the nest after college, but he's moving out Sep 1 (glory, hallelujah). My older son lives in Columbus, Ohio very close to all my doctors and the hospital. I live about 2 hours south in Athens, Ohio. My boys have been great, though I think a little scared for me. I worry about what this means for them.

    I'll keep you posted about what I find out tomorrow. Hang in there.
  • pfmerriell
    pfmerriell Member Posts: 22

    Good morning.
    I am a 58 year

    Good morning.
    I am a 58 year old divorced mother of two grown sons. My younger son returned to the nest after college, but he's moving out Sep 1 (glory, hallelujah). My older son lives in Columbus, Ohio very close to all my doctors and the hospital. I live about 2 hours south in Athens, Ohio. My boys have been great, though I think a little scared for me. I worry about what this means for them.

    I'll keep you posted about what I find out tomorrow. Hang in there.

    I forgot to tell you about
    I forgot to tell you about cytomel. It's a thyroid replacement hormone, but just T3, I think. My understanding is that it's easier to come off cytomel prior to the radio-iodine treatment.
  • sr_mccreery
    sr_mccreery Member Posts: 12
    hello
    Okay, so you take the T3 and I take the T4 (Synthroid). It is very scary for all of us. My kids are 19, 13, and 9. The two younger ones don't know that I have actually been diagnosed with cancer yet, though they know something had to be wrong for my thyroid to be removed. It is hard to find the right way to tell them- I guess I have to just try to keep positive and not cry when I tell them :(. Do you know anything about the actual size of your cancer and whether it had spread? If I understand what the doctor told me just after hearing the bad news, the cancer is .8 and hadn't spread. I will be preparing a list of questions, too. It's interesting, I finish nursing school in December (RN), yet I couldn't think of a single thing to say when I got the news. Not a single meaningful question.... I wasn't prepared one bit because I had few, if any, of the risk factors and had it set in my mind that it was benign. I am glad your boys are supportive, and that they're close by for you. My family is nearby as well (my husband, parents, sister), and I am getting my treatments in Annapolis. The problem with that is that I have to travel 1.5 hours to get there. I am hoping to find something closer... Best of luck :). Renee
  • sr_mccreery
    sr_mccreery Member Posts: 12
    Hurthle cell
    Yes, I am new and I am here! I have been posting if you're interested in my story. I am interested in yours.... hint, hint :).
  • pfmerriell
    pfmerriell Member Posts: 22

    hello
    Okay, so you take the T3 and I take the T4 (Synthroid). It is very scary for all of us. My kids are 19, 13, and 9. The two younger ones don't know that I have actually been diagnosed with cancer yet, though they know something had to be wrong for my thyroid to be removed. It is hard to find the right way to tell them- I guess I have to just try to keep positive and not cry when I tell them :(. Do you know anything about the actual size of your cancer and whether it had spread? If I understand what the doctor told me just after hearing the bad news, the cancer is .8 and hadn't spread. I will be preparing a list of questions, too. It's interesting, I finish nursing school in December (RN), yet I couldn't think of a single thing to say when I got the news. Not a single meaningful question.... I wasn't prepared one bit because I had few, if any, of the risk factors and had it set in my mind that it was benign. I am glad your boys are supportive, and that they're close by for you. My family is nearby as well (my husband, parents, sister), and I am getting my treatments in Annapolis. The problem with that is that I have to travel 1.5 hours to get there. I am hoping to find something closer... Best of luck :). Renee

    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
  • sr_mccreery
    sr_mccreery Member Posts: 12
    Hi
    I wish you well with the doctor's appointment tomorrow, and I hope to hear from you. Thanks for the tip on the website- going to check it out right now. Good luck.
  • pfmerriell
    pfmerriell Member Posts: 22

    Hi
    I wish you well with the doctor's appointment tomorrow, and I hope to hear from you. Thanks for the tip on the website- going to check it out right now. Good luck.

    Visit with my endocrinologist
    My friend and I drove up this morning and it went very well. The doctor is very smart and was patient while I went through all my papers with all my questions. He clarified the radio-iodine procedure and i feel much better about what's going on.

    Because I am over 45 and nodule was 4.5 cm and seems to be contained to the thyroid at this time, I am Stage 2.

    The results of my blood work showed by T3 level was still too high, so the doc has reduced by dosage again to 12.5 mcg twice day.

    I will go off the cytomel Aug 19; start the low iodine diet Aug 28; have blood work Sep 2.

    On Sep 8, I will have a dose of I-123; the next morning I have the uptake scan and another dose of I-123; the next day I have a whole body scan. Then the 11th, I have the dose of I-131. Over that weekend I will need to be somewhat isolated. The 14th I start the Synthroid and resume a normal diet. The 18th, I have another whole body scan.

    I'm hoping I can get through the hypothyroid period without too much of a reaction; I really don't have time to be that tired. But we'll just have to se how it goes.

    I've been pleased with my care so far.
  • sr_mccreery
    sr_mccreery Member Posts: 12

    Visit with my endocrinologist
    My friend and I drove up this morning and it went very well. The doctor is very smart and was patient while I went through all my papers with all my questions. He clarified the radio-iodine procedure and i feel much better about what's going on.

    Because I am over 45 and nodule was 4.5 cm and seems to be contained to the thyroid at this time, I am Stage 2.

    The results of my blood work showed by T3 level was still too high, so the doc has reduced by dosage again to 12.5 mcg twice day.

    I will go off the cytomel Aug 19; start the low iodine diet Aug 28; have blood work Sep 2.

    On Sep 8, I will have a dose of I-123; the next morning I have the uptake scan and another dose of I-123; the next day I have a whole body scan. Then the 11th, I have the dose of I-131. Over that weekend I will need to be somewhat isolated. The 14th I start the Synthroid and resume a normal diet. The 18th, I have another whole body scan.

    I'm hoping I can get through the hypothyroid period without too much of a reaction; I really don't have time to be that tired. But we'll just have to se how it goes.

    I've been pleased with my care so far.

    I am glad you had all of
    I am glad you had all of your questions answered and are in capable hands. Stage 2 is good- caught early! :P) I am guessing you work full-time? Nursing school is very demanding, with clinicals that can be anywhere up to 2 hours away, so I am going to run into some trouble, too with the whole fatigue thing. Not to metnion weight gain- I am already overweight as it is. I have contacted the professors about being radioactive and haven't heard back yet- I hope we can work something out so I can graduate with the class I started with. So does the endo. sound pretty confident about the radioactive iodine treatment?
  • pfmerriell
    pfmerriell Member Posts: 22

    I am glad you had all of
    I am glad you had all of your questions answered and are in capable hands. Stage 2 is good- caught early! :P) I am guessing you work full-time? Nursing school is very demanding, with clinicals that can be anywhere up to 2 hours away, so I am going to run into some trouble, too with the whole fatigue thing. Not to metnion weight gain- I am already overweight as it is. I have contacted the professors about being radioactive and haven't heard back yet- I hope we can work something out so I can graduate with the class I started with. So does the endo. sound pretty confident about the radioactive iodine treatment?

    The endo didn't sound one
    The endo didn't sound one way or the other about the treatment. It seems that we won't really know until the scans to see where I light up.

    Yes, I work full time and then some. I am a real estate Broker and co-owner of my company. My business partner was diagnosed with Stage 4 incurable lung cancer last summer. So, I have been managing the company while he has been in treatment and traveling when he can. So this has hit us really hard. But we got great news yesterday after his recent scan. They didn't find any cancer in the mass in his lung, so he seems to be in a kind of remission. He had been having chemo every 3 weeks, but now won't have another for 8 weeks.
    It's nice to have some good news for a change.

    Try not to worry too much about your nursing classes/clinicals. It's hard work and I hope you're professors will work with you. Take care.
  • sr_mccreery
    sr_mccreery Member Posts: 12

    The endo didn't sound one
    The endo didn't sound one way or the other about the treatment. It seems that we won't really know until the scans to see where I light up.

    Yes, I work full time and then some. I am a real estate Broker and co-owner of my company. My business partner was diagnosed with Stage 4 incurable lung cancer last summer. So, I have been managing the company while he has been in treatment and traveling when he can. So this has hit us really hard. But we got great news yesterday after his recent scan. They didn't find any cancer in the mass in his lung, so he seems to be in a kind of remission. He had been having chemo every 3 weeks, but now won't have another for 8 weeks.
    It's nice to have some good news for a change.

    Try not to worry too much about your nursing classes/clinicals. It's hard work and I hope you're professors will work with you. Take care.

    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.......
  • Nocaliman
    Nocaliman Member Posts: 9

    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.......

    A little ahead of you guys
    Hi guys,

    My name is Chris. I'm a 49yo male. I was diagnosed with hurthle cell in mid June. My story is about the same as yours.....lump in thyroid felt by my ENT, CAT scan verified, FNA came back as Hurthle cell, told it was a VERY small chance it was cancer, had a nuke scan that came up cold, partial thyroidectomy of the affected lobe, came back from path for Hurthle cell carcinoma with some papalary in it. Also got MRSA (an added bonus!)One week later back in for the other lobe removed & some lynph nodes at the same time. Had a small spot of begnin hurthle cell in the other lobe but that was it. I did have a small spot of Papilary carcinoma in one lymph node which my endo said was VERY unusual but he wasn't that concerned about it. Went off meds, went hypothyroid, went on low iodine diet, and had I131 treatment on the 26th of Aug. Still in partial seclusion, but at least I'm back on my meds which is a relief!! I would love to keep in touch with you guys as we are a very small group. Seems like everyone has alot of Q's......as do I.
  • pfmerriell
    pfmerriell Member Posts: 22
    Nocaliman said:

    A little ahead of you guys
    Hi guys,

    My name is Chris. I'm a 49yo male. I was diagnosed with hurthle cell in mid June. My story is about the same as yours.....lump in thyroid felt by my ENT, CAT scan verified, FNA came back as Hurthle cell, told it was a VERY small chance it was cancer, had a nuke scan that came up cold, partial thyroidectomy of the affected lobe, came back from path for Hurthle cell carcinoma with some papalary in it. Also got MRSA (an added bonus!)One week later back in for the other lobe removed & some lynph nodes at the same time. Had a small spot of begnin hurthle cell in the other lobe but that was it. I did have a small spot of Papilary carcinoma in one lymph node which my endo said was VERY unusual but he wasn't that concerned about it. Went off meds, went hypothyroid, went on low iodine diet, and had I131 treatment on the 26th of Aug. Still in partial seclusion, but at least I'm back on my meds which is a relief!! I would love to keep in touch with you guys as we are a very small group. Seems like everyone has alot of Q's......as do I.

    Dear Chris,
    Have you had a

    Dear Chris,
    Have you had a post treatment whole body scan? Is that part of your protocol? Does anyone communicate with you as the treatment happens? or do you have to wait to see your endo?
    Just the not knowing the procedure us unnerving.
    And going hypo doesn't seem to cure the insomnia. I'm having lots of trouble sleeping at night.
    Thanks for posting.
    Pat
  • Nocaliman
    Nocaliman Member Posts: 9

    Dear Chris,
    Have you had a

    Dear Chris,
    Have you had a post treatment whole body scan? Is that part of your protocol? Does anyone communicate with you as the treatment happens? or do you have to wait to see your endo?
    Just the not knowing the procedure us unnerving.
    And going hypo doesn't seem to cure the insomnia. I'm having lots of trouble sleeping at night.
    Thanks for posting.
    Pat

    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
  • Lola48
    Lola48 Member Posts: 16
    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

    hurthle cell --
    I also deal with this type of cancer. My doctor said she won't do a Pet Scan unless my blood levels change, but how do I know if the thyroglobulin is accurate?

    She said the Pet Scan won't pick up a tumor unless it a certain size???

    I am going to look that one up, but maybe you know something....
  • Nocaliman
    Nocaliman Member Posts: 9
    Lola48 said:

    hurthle cell --
    I also deal with this type of cancer. My doctor said she won't do a Pet Scan unless my blood levels change, but how do I know if the thyroglobulin is accurate?

    She said the Pet Scan won't pick up a tumor unless it a certain size???

    I am going to look that one up, but maybe you know something....

    Hi Lola,
    No.....I don't know

    Hi Lola,

    No.....I don't know anything other than what I've read on the net and what my endo has told me. The article I read about the PET scan (I can't even find it now) just said that the PET scan was more reliable than the MET scan if the Hurthle cell isn't soaking up the 131. It was also one of those articles that was written by a doctor for doctors so it was a little difficult to understand. I think I mispoke when I said "the only way to know for sure". It's just more reliable.

    As far as the thyroglobulin, as far as I can tell the only thing that can produce it is thyroid cells. If we've had a total t-ectomy we should have none in our blood. As far as the accuracy of the test I don't know about that one.

    How far into your diagnosis are you? How are things going? Would love to hear your story.
    Chris
  • pfmerriell
    pfmerriell Member Posts: 22
    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

    It's sounds like you were
    It's sounds like you were lucky to have no side effects from the 131. Looks like I'm about 2 weeks behind you in this treatment.

    As far as the insomnia goes, I am a light sleeper, but I am much more tired going hypo and it's just strange that I'm exhausted and can't fall asleep!. My endo is writing me a scrip for Ambien which I'll pick up tomorrow when I go for my blood work. At least I'll have it on hand if I need it.
  • Lola48
    Lola48 Member Posts: 16
    Nocaliman said:

    Hi Lola,
    No.....I don't know

    Hi Lola,

    No.....I don't know anything other than what I've read on the net and what my endo has told me. The article I read about the PET scan (I can't even find it now) just said that the PET scan was more reliable than the MET scan if the Hurthle cell isn't soaking up the 131. It was also one of those articles that was written by a doctor for doctors so it was a little difficult to understand. I think I mispoke when I said "the only way to know for sure". It's just more reliable.

    As far as the thyroglobulin, as far as I can tell the only thing that can produce it is thyroid cells. If we've had a total t-ectomy we should have none in our blood. As far as the accuracy of the test I don't know about that one.

    How far into your diagnosis are you? How are things going? Would love to hear your story.
    Chris

    Hey Chris, what is a "MET" scan-- I hope that's not ridiculous
    but please clue me in. My story: Back in Jan. 2007 I had been having shortness/painful breathing, trouble swallowing and a couple of incidents of near fainting. The Drs. ran tests and everything looked "normal". (they had also done a CT scan of neck/chest with showed nodules, but no one bothered to tell me) So fast forward to Jan 2008, I am feeling lousy still feeling like I have a marble in my throat and another CT is done. They decided to let me in on the nodules. Went for needle guided ultrasound biospy, and it comes back with hurthle cells. I was told it's 50/50 chance of cancer, and whenever they see this, the thyoid is removed. On Feb 14, 2008 I had a total thryoidectomy. I had several nodules in each lobe. Got the diagnosis a week later. I went for 1st scan in April 2008 to kill off residual tissue. I still get get really confused about the levels (tsh) but so far mine have been good, despite the symptoms i continue to have. I had my second scan in May of 2009 and have ultrasounds every 3 mos. and bloodwork, when I see the endo. I have asked for a pet scan but the Dr. said if the bloodwork looks good then we wait. Whats your story and how are you feeling since you were diagnosed?
  • Nocaliman
    Nocaliman Member Posts: 9
    Lola48 said:

    Hey Chris, what is a "MET" scan-- I hope that's not ridiculous
    but please clue me in. My story: Back in Jan. 2007 I had been having shortness/painful breathing, trouble swallowing and a couple of incidents of near fainting. The Drs. ran tests and everything looked "normal". (they had also done a CT scan of neck/chest with showed nodules, but no one bothered to tell me) So fast forward to Jan 2008, I am feeling lousy still feeling like I have a marble in my throat and another CT is done. They decided to let me in on the nodules. Went for needle guided ultrasound biospy, and it comes back with hurthle cells. I was told it's 50/50 chance of cancer, and whenever they see this, the thyoid is removed. On Feb 14, 2008 I had a total thryoidectomy. I had several nodules in each lobe. Got the diagnosis a week later. I went for 1st scan in April 2008 to kill off residual tissue. I still get get really confused about the levels (tsh) but so far mine have been good, despite the symptoms i continue to have. I had my second scan in May of 2009 and have ultrasounds every 3 mos. and bloodwork, when I see the endo. I have asked for a pet scan but the Dr. said if the bloodwork looks good then we wait. Whats your story and how are you feeling since you were diagnosed?

    Hi Lola,
    The MET scan is the

    Hi Lola,

    The MET scan is the one that picks up any radioactive iodine that is absorbed by thyroid cells and shows up as bright spots on the scan. Again, Hurthle Cells have a tendency not to absorb iodine. A PET scan.....the way I understand it, uses sugar to detect cancer. Cancer cells metabolize sugar faster than other cells and I guess they have some kind of detection device to find those spots. At least thats the way I understood it. If your endo said the tumors have to be a certain size for the PET scan to detect....that's probably right.

    As for my story, it's pretty basic. I posted it up a few spaces if you want to read it.

    How am I feeling? Thats the weird question. When I went to see my ENT, I felt great. I had quit smoking for 6 mo. (35 year smoker) Was working out....eating healthy.....had lost some weight even though I wasn't really overweight. When I had my first partial t-ectomy I got MRSA....that severe, drug resistant bacterial infection. They put me on a myriad of antibiotics that I think may have damaged my kidneys. I have kidney pain now and my urine looks kind of orange like it may have blood in it. My throat is hurting on and off and the pain seems to radiate up my jaw to my ears. I have pain to the touch under my ears ( i think there's lymph nodes in that area). Also, my blood pressure is skyrocketing after I went back on my thyroiod meds after my I131 treatment (150/107). Overall I feel terrible and feel like my cancer is spreading or has spread and is killing me. I realize all of this could be stress related as I'm pretty freaked out but who can tell? Maybe I need a shrink.
  • This comment has been removed by the Moderator
  • Lola48
    Lola48 Member Posts: 16
    Nocaliman said:

    Hi Lola,
    The MET scan is the

    Hi Lola,

    The MET scan is the one that picks up any radioactive iodine that is absorbed by thyroid cells and shows up as bright spots on the scan. Again, Hurthle Cells have a tendency not to absorb iodine. A PET scan.....the way I understand it, uses sugar to detect cancer. Cancer cells metabolize sugar faster than other cells and I guess they have some kind of detection device to find those spots. At least thats the way I understood it. If your endo said the tumors have to be a certain size for the PET scan to detect....that's probably right.

    As for my story, it's pretty basic. I posted it up a few spaces if you want to read it.

    How am I feeling? Thats the weird question. When I went to see my ENT, I felt great. I had quit smoking for 6 mo. (35 year smoker) Was working out....eating healthy.....had lost some weight even though I wasn't really overweight. When I had my first partial t-ectomy I got MRSA....that severe, drug resistant bacterial infection. They put me on a myriad of antibiotics that I think may have damaged my kidneys. I have kidney pain now and my urine looks kind of orange like it may have blood in it. My throat is hurting on and off and the pain seems to radiate up my jaw to my ears. I have pain to the touch under my ears ( i think there's lymph nodes in that area). Also, my blood pressure is skyrocketing after I went back on my thyroiod meds after my I131 treatment (150/107). Overall I feel terrible and feel like my cancer is spreading or has spread and is killing me. I realize all of this could be stress related as I'm pretty freaked out but who can tell? Maybe I need a shrink.

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

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

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

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

    Do you feel like everything in your life changed, when your thyroid went on the rampage??
  • Nocaliman
    Nocaliman Member Posts: 9
    Lola48 said:

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

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

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

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

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

    Hi Lola
    Sorry it took so long to get back to you. Very busy. Back to work...seeing the grandkids...scans....doctors....the whole bit.

    Yeah.....my doctor gave me Xanax for my anxiety, which does seem to help a bit. Seems like the thing that helps more than anything is time and acceptance of your situation.

    Yes, my doctor did take some lymph nodes out on my 2nd surgery right around my thyroid. One of them had a small spot of papillary cancer in them....so I actually have 2 types of thyroid cancer. My main tumor was primarily Hurthle cell. Had my scan last Friday and saw the doctor on Tuesday and he said there was a lit up spot under my right ear. He said it was probably another spot of papillary cancer in a lymph node but it absorbed the I131 well so it was probably dying. No other spots anywhere. Looks like they are doing the same thing with me as they did with you. Thyroglobulin levels in a month.....if they are normal....we wait. If they are high.....we go looking for Hurthle Cell.

    Yes.......pain in my throat. Sometimes when breathing. My jaw and sometimes the roof of my mouth hurt. Can't say my teeth but it's a very nondiscript pain that moves around and radiates. I also have some pain that seems to start at my thyroid area and radiate downward and into my chest. I see my ENT surgeon next week so I'll ask him about all those things when I see him.

    Yes......my life has changed forever. No matter what the outcome of all of this is. But not all negetivley. I will never take one more day of life for granted again. I will never hold grudges, anger, and resentment toward anyone and live with unhappiness ever again. Maybe it's a kind of gift in a way.

    Keep in touch,
    Chris
  • Nocaliman
    Nocaliman Member Posts: 9

    It's sounds like you were
    It's sounds like you were lucky to have no side effects from the 131. Looks like I'm about 2 weeks behind you in this treatment.

    As far as the insomnia goes, I am a light sleeper, but I am much more tired going hypo and it's just strange that I'm exhausted and can't fall asleep!. My endo is writing me a scrip for Ambien which I'll pick up tomorrow when I go for my blood work. At least I'll have it on hand if I need it.

    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
  • Rita C
    Rita C Member Posts: 6
    Nocaliman said:

    Hi Lola
    Sorry it took so long to get back to you. Very busy. Back to work...seeing the grandkids...scans....doctors....the whole bit.

    Yeah.....my doctor gave me Xanax for my anxiety, which does seem to help a bit. Seems like the thing that helps more than anything is time and acceptance of your situation.

    Yes, my doctor did take some lymph nodes out on my 2nd surgery right around my thyroid. One of them had a small spot of papillary cancer in them....so I actually have 2 types of thyroid cancer. My main tumor was primarily Hurthle cell. Had my scan last Friday and saw the doctor on Tuesday and he said there was a lit up spot under my right ear. He said it was probably another spot of papillary cancer in a lymph node but it absorbed the I131 well so it was probably dying. No other spots anywhere. Looks like they are doing the same thing with me as they did with you. Thyroglobulin levels in a month.....if they are normal....we wait. If they are high.....we go looking for Hurthle Cell.

    Yes.......pain in my throat. Sometimes when breathing. My jaw and sometimes the roof of my mouth hurt. Can't say my teeth but it's a very nondiscript pain that moves around and radiates. I also have some pain that seems to start at my thyroid area and radiate downward and into my chest. I see my ENT surgeon next week so I'll ask him about all those things when I see him.

    Yes......my life has changed forever. No matter what the outcome of all of this is. But not all negetivley. I will never take one more day of life for granted again. I will never hold grudges, anger, and resentment toward anyone and live with unhappiness ever again. Maybe it's a kind of gift in a way.

    Keep in touch,
    Chris

    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