A Hurthle Cell Carcinoma Case. Need some second opinion advice.
Based on path report, they removed the rest of the thyroid September 13, 2010. No problems. Surgeon later told me there was a one mm speck on the remaining piece of thyroid they removed and it wasn’t examined since they already know the one mm speck is a cancerous spec or spot. Anyway, thyroid completely gone , no problems.
I-131 ablation pill was administered one month later on Oct 13, 2010. No problems. Full body scan one week later on Oct 20, 2010. Endoctrinologist says scan comes back showing I-131 absorbsion uptake at the front of the neck where the thyroid was.
Endoctrinologist says it’s suspicious, says the Hurthle cell cancer may have spread to the lymph nodes there. My endoctrinologist says he will show the body scan to another doctor, consult with him on the scan results and then call me. Endoctrininologist calls me within 24 hours and tells me the lymph nodes show Hurthle cell cancer cells. Chances of that happening per the doctor were 1 in 10.
Now taking thyroid pills and feel back to my old self.
I asked the endoctrinologist whether it would be best to immediately cut out the infected lymph nodes. Endoctrinologist then says the I-131 dose I got may kill the cancer in the lymph nodes as well as ablate any microscopic thyroid tissue left after the surgeries. He says we’ll have to wait and see. He plans another dose of I-131 in 4 months (that’s about February 2011) and then another scan to see if everything was killed off or if it’s still there in the lymph nodes or worse, has spread.
He also asked if I wanted to get a second opinion. I was thinking just cut out the lymph nodes now and be done with it and hope for the best. My understanding is that I-131 rarely kills Hurthle cancer cells. Only works about 1 time in 10.
So far I don't feel so lucky. Any comments or thoughts? and can anyone recommend someone or someplace good for a second opinion on all of this? I'd like to find my own source rather than have my endo refer me to a colleague of his. I'm just more comfortable that way. I called Mayo but they can’t see me until late December 2010. I'm thinking of going to the cancer center at the University of Iowa Hospitals and Clinics. Anywhere else in the Midwest to consider?
Comments
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not sure what to say except
not sure what to say except its your body and you should be able to tell the doctor what you want and have them explain why they think its not nessary now
come to him with thousands of questions do your web reserch find options and take command of your treatment.
yes you probaly should get a second opinion if you can but unless they have a good reason to delay and you want it out then i see no reason for them to wait (asumeing medical coverage covers it or you have a way to cover the costs)
good luck and dont stop fighting and win this one.
another question I love sprining on the doctor is asking them if they had this issue would they want to wait? and if they start going off with its not bad or such ask them if they would be willing to have a few of those cells transfered to there body?
i know its not political correct and completly lacks tact but it at least let the doctor know I want it gone and im not good with the lets wait and see approach.. i waited from december to febuary before my surgery before it was identified as cancer... that was long enough of a wait0 -
similar situation
Hi,
My thyroid situation is similar. I had my surgeries & treatment about 1 month before you.
(lobectomy on 7/27/10 for a large nodule, 4.7cm. Pathology during surgery was inconclusive. Pathology came back positive for HCC 1 week later. TT on 8/10/10. RAI on 9/8/10). Because of the logistics of going through RAI and isolation, I had the treatment locally in the midwest, not at a major research center. My thought was that if the results were bad I would then look into a 2nd opinion. Mayo in MN looks great, but wasn't covered by my insurance. MD Anderson, Sloan Kettering and John Hopkins also are highly recommended. U of Iowa looked like a good next choice in the midwest. I have close friends that live there, but that wasn't covered by my insurance either.
Frustratingly, the information on HCC varies by source. I've also read online that it's more aggressive and that RAI is not very effective on Hurthle Cells. My Dr's contradicted this and stated that they feel the RAI would be effective. During surgery, they did not find indication of spread to my lymph nodes. My understanding is that the best indicator of metastases is through tg levels. (bloodwork every 3 months at first). So now I'm in a wait and see mode, hoping that future tests show no spread.
Best of luck to you - I wish you the best. Please post again. Would appreciate your insight from your experience with HCC and treatment in the midwest. This website is a great source of reference. I've probably learned more from postings than I have from any other website or doctor.0 -
To LizLizP said:similar situation
Hi,
My thyroid situation is similar. I had my surgeries & treatment about 1 month before you.
(lobectomy on 7/27/10 for a large nodule, 4.7cm. Pathology during surgery was inconclusive. Pathology came back positive for HCC 1 week later. TT on 8/10/10. RAI on 9/8/10). Because of the logistics of going through RAI and isolation, I had the treatment locally in the midwest, not at a major research center. My thought was that if the results were bad I would then look into a 2nd opinion. Mayo in MN looks great, but wasn't covered by my insurance. MD Anderson, Sloan Kettering and John Hopkins also are highly recommended. U of Iowa looked like a good next choice in the midwest. I have close friends that live there, but that wasn't covered by my insurance either.
Frustratingly, the information on HCC varies by source. I've also read online that it's more aggressive and that RAI is not very effective on Hurthle Cells. My Dr's contradicted this and stated that they feel the RAI would be effective. During surgery, they did not find indication of spread to my lymph nodes. My understanding is that the best indicator of metastases is through tg levels. (bloodwork every 3 months at first). So now I'm in a wait and see mode, hoping that future tests show no spread.
Best of luck to you - I wish you the best. Please post again. Would appreciate your insight from your experience with HCC and treatment in the midwest. This website is a great source of reference. I've probably learned more from postings than I have from any other website or doctor.
Going to Univ. of Iowa on Nov 8 for a second opinion on everything. We'll see how it goes. Wish you the best too.0 -
Glad you are getting a second opiniongreyhound303 said:To Liz
Going to Univ. of Iowa on Nov 8 for a second opinion on everything. We'll see how it goes. Wish you the best too.
Good for you! A second opinion is a wise decision. I wish I had been more agressive when I was originally diagnosed with HCC in Sept. 2006.
I had a TT then and was told all is well; the cancer is gone. I did not receive any post operative treatments. I took my surgeon's word for it that I did not need any oncology follow up. I was followed by my PCP and an endocrinologist. I had a body scan after 6 months and again after 18 months. After that just ultrasounds and blood test every 6 months. None of the tests showed any abnormalities. My tg was at 0 in January 2010. In fact it never did rise even when I had two large tumors.
Feb. 2010 I felt a nodule on my neck. I insisted on surgery. It was recurrant HCC. In May I felt another mass and underwent a bilateral neck dissection. There were 2 HCC tumors and several lymph nodes removed. Since then I have had an I-131 treatment and am undergoing EBR treatments now.
I regret not being better informed back in 2006. It is very difficult to find doctors who are familiar with HCC. This time I asked very pointed questions about their experience/knowledge treating HCC. There are a lot of conflicting ideas out there. I've decided to go with an aggressive approach to try to prevent another recurrance.
I wish you all the best and encourage you to follow your gut. I hope you can find a great team of doctors.0 -
The Second OpinionAliceP said:Glad you are getting a second opinion
Good for you! A second opinion is a wise decision. I wish I had been more agressive when I was originally diagnosed with HCC in Sept. 2006.
I had a TT then and was told all is well; the cancer is gone. I did not receive any post operative treatments. I took my surgeon's word for it that I did not need any oncology follow up. I was followed by my PCP and an endocrinologist. I had a body scan after 6 months and again after 18 months. After that just ultrasounds and blood test every 6 months. None of the tests showed any abnormalities. My tg was at 0 in January 2010. In fact it never did rise even when I had two large tumors.
Feb. 2010 I felt a nodule on my neck. I insisted on surgery. It was recurrant HCC. In May I felt another mass and underwent a bilateral neck dissection. There were 2 HCC tumors and several lymph nodes removed. Since then I have had an I-131 treatment and am undergoing EBR treatments now.
I regret not being better informed back in 2006. It is very difficult to find doctors who are familiar with HCC. This time I asked very pointed questions about their experience/knowledge treating HCC. There are a lot of conflicting ideas out there. I've decided to go with an aggressive approach to try to prevent another recurrance.
I wish you all the best and encourage you to follow your gut. I hope you can find a great team of doctors.
Prior to going for the appointment in Iowa City I typed out my questions, and made sure Iowa City had all my previous medical work. I sent the questions ahead to Iowa with a request that they be show to my doctor ahead of time. I called three days before and again asked the receptionist/secretary to get my questions to the doctor ahaad of time so he could look at them ahead of time so there could be some meaningful discussion of the questions and my case when I saw him in person. I'm glad I did all this because if I had not the doctor would have walked in to see me without knowing anything about where I was at in terms of knowledge about the cancer. As it turned out the doctor did finally get my case and questions ahead of time and did put some time into my case before seeing me. I also took with me medical articles that had copied from the internet. Stuff like The Effect of Retinoic Acid Treatment on I-131 Uptake in Hurthle Cell Cancer Patients and Radioactive I-131 Whole Bady Scan False Positives. I wanted him to know what I knew. I think this helped. He knew where I was at and could factor that in to his approach. I left him the articles and he said would like to read them.
I liked him. He was young, but on top of it. He told me things and explained things in a different way than my first endotrinologist. As it turned out, he agree that the cancer metasized to the ajoining/surrounding lymph nodes but unlike the first doctor, this doctor told me that there were no tumors or signs of tumors in the lymph nodes or glands only Hurtle cells. He also said that in his opinion the the I-131 showed uptake in those cells in such a way that I was very fortunate in that he believes that I am in that samll percentage (10%) of people for which I-131 radiation actually kills the rogue Hurthle cancer cells in your body. He believes that is what the whole body scan scan shows.
He agrees with my first doctor that I should at this point monitor my TSH levels, do another scan in 4 months, and watch for any signs of growing tumors or other physical symptoms. If any tumor starts showing up in the future, then try to catch it early and excise it asap. For now that is the plan.
The Iowa City doctor is also going to take my case for review by the team of cancer specialists at the Univ. of Iowa that meets every two weeks to discuss cancer patient's cases. He'll get additional opinions and in put there and let me know.
He answered all 12 of my questions. Took an hour with me. Examined me. Used a machine to look inside my throat for signs of tumors and had another doctor come in and listen to about half of my visit.
Bottom line. I got good news (lucky) and separate from that was pretty impressed with the University of Iowa Hospitals and clinics.0 -
2nd opiniongreyhound303 said:The Second Opinion
Prior to going for the appointment in Iowa City I typed out my questions, and made sure Iowa City had all my previous medical work. I sent the questions ahead to Iowa with a request that they be show to my doctor ahead of time. I called three days before and again asked the receptionist/secretary to get my questions to the doctor ahaad of time so he could look at them ahead of time so there could be some meaningful discussion of the questions and my case when I saw him in person. I'm glad I did all this because if I had not the doctor would have walked in to see me without knowing anything about where I was at in terms of knowledge about the cancer. As it turned out the doctor did finally get my case and questions ahead of time and did put some time into my case before seeing me. I also took with me medical articles that had copied from the internet. Stuff like The Effect of Retinoic Acid Treatment on I-131 Uptake in Hurthle Cell Cancer Patients and Radioactive I-131 Whole Bady Scan False Positives. I wanted him to know what I knew. I think this helped. He knew where I was at and could factor that in to his approach. I left him the articles and he said would like to read them.
I liked him. He was young, but on top of it. He told me things and explained things in a different way than my first endotrinologist. As it turned out, he agree that the cancer metasized to the ajoining/surrounding lymph nodes but unlike the first doctor, this doctor told me that there were no tumors or signs of tumors in the lymph nodes or glands only Hurtle cells. He also said that in his opinion the the I-131 showed uptake in those cells in such a way that I was very fortunate in that he believes that I am in that samll percentage (10%) of people for which I-131 radiation actually kills the rogue Hurthle cancer cells in your body. He believes that is what the whole body scan scan shows.
He agrees with my first doctor that I should at this point monitor my TSH levels, do another scan in 4 months, and watch for any signs of growing tumors or other physical symptoms. If any tumor starts showing up in the future, then try to catch it early and excise it asap. For now that is the plan.
The Iowa City doctor is also going to take my case for review by the team of cancer specialists at the Univ. of Iowa that meets every two weeks to discuss cancer patient's cases. He'll get additional opinions and in put there and let me know.
He answered all 12 of my questions. Took an hour with me. Examined me. Used a machine to look inside my throat for signs of tumors and had another doctor come in and listen to about half of my visit.
Bottom line. I got good news (lucky) and separate from that was pretty impressed with the University of Iowa Hospitals and clinics.
glad to hear the news was good.0 -
Hurthle cell cancergreyhound303 said:The Second Opinion
Prior to going for the appointment in Iowa City I typed out my questions, and made sure Iowa City had all my previous medical work. I sent the questions ahead to Iowa with a request that they be show to my doctor ahead of time. I called three days before and again asked the receptionist/secretary to get my questions to the doctor ahaad of time so he could look at them ahead of time so there could be some meaningful discussion of the questions and my case when I saw him in person. I'm glad I did all this because if I had not the doctor would have walked in to see me without knowing anything about where I was at in terms of knowledge about the cancer. As it turned out the doctor did finally get my case and questions ahead of time and did put some time into my case before seeing me. I also took with me medical articles that had copied from the internet. Stuff like The Effect of Retinoic Acid Treatment on I-131 Uptake in Hurthle Cell Cancer Patients and Radioactive I-131 Whole Bady Scan False Positives. I wanted him to know what I knew. I think this helped. He knew where I was at and could factor that in to his approach. I left him the articles and he said would like to read them.
I liked him. He was young, but on top of it. He told me things and explained things in a different way than my first endotrinologist. As it turned out, he agree that the cancer metasized to the ajoining/surrounding lymph nodes but unlike the first doctor, this doctor told me that there were no tumors or signs of tumors in the lymph nodes or glands only Hurtle cells. He also said that in his opinion the the I-131 showed uptake in those cells in such a way that I was very fortunate in that he believes that I am in that samll percentage (10%) of people for which I-131 radiation actually kills the rogue Hurthle cancer cells in your body. He believes that is what the whole body scan scan shows.
He agrees with my first doctor that I should at this point monitor my TSH levels, do another scan in 4 months, and watch for any signs of growing tumors or other physical symptoms. If any tumor starts showing up in the future, then try to catch it early and excise it asap. For now that is the plan.
The Iowa City doctor is also going to take my case for review by the team of cancer specialists at the Univ. of Iowa that meets every two weeks to discuss cancer patient's cases. He'll get additional opinions and in put there and let me know.
He answered all 12 of my questions. Took an hour with me. Examined me. Used a machine to look inside my throat for signs of tumors and had another doctor come in and listen to about half of my visit.
Bottom line. I got good news (lucky) and separate from that was pretty impressed with the University of Iowa Hospitals and clinics.
I had minimally invasive Hurthle cell carcinoma 2000, tumors on all glands. Had two surgeries and small dose of RAI to get rid of any remaining thyroid tissue. Have had no recurrances and have had my care managed at Mayo Clinic. I did extensive research on this cancer when I was diagnosed and the first few years after. From everything i have read surgery seems to be the cure!0 -
Hurthlemaggiedeare said:Hurthle cell cancer
I had minimally invasive Hurthle cell carcinoma 2000, tumors on all glands. Had two surgeries and small dose of RAI to get rid of any remaining thyroid tissue. Have had no recurrances and have had my care managed at Mayo Clinic. I did extensive research on this cancer when I was diagnosed and the first few years after. From everything i have read surgery seems to be the cure!
I would like to connect with you, going through a rough patch.... any help would be great.... going in for completion 2nd May.. Many thanks Tracey0 -
hurthle cell lesionmolly2003 said:Hurthle
I would like to connect with you, going through a rough patch.... any help would be great.... going in for completion 2nd May.. Many thanks Tracey
Hi,
i have just been diagnoised with a benign hurthle cell lesion after having a fine needle aspiration biopsy. But have since read on the internet that it is not possible to tell if hurthle cell lesions are benign or malignant from results of a FNA.
Im now really confused...has anyone else been told the same thing?
thanks
Emma0 -
Hurthle CellEmma_lou said:hurthle cell lesion
Hi,
i have just been diagnoised with a benign hurthle cell lesion after having a fine needle aspiration biopsy. But have since read on the internet that it is not possible to tell if hurthle cell lesions are benign or malignant from results of a FNA.
Im now really confused...has anyone else been told the same thing?
thanks
Emma
Hi Emma,
I found a lump in September 08. After an ultrasound I was referred to an Endo., that took about 5 months, followed by a FNA 2 months later. The results came back as atypical cell growth. The doctor gave me the option of waiting and watching for six months or schedule surgery. I opted for surgery on July 20, 2009. The pathology came back Hurthle Cell Carcinoma Stage 3. I was fifty nine and a half and the nodule was large, therefore stage 3. Prior to surgery, my surgeon had gotten my approval to remove the entire thyroid, if under microscope the right lobe looked suspicious, he would do a total thyroidectomy. The report stated widely invasive tumor with vascular involvement. A friend's niece was recently diagnosed with a Hurthle Cell neoplasm, after removal it was benign.
I am enclosing a site I found useful, I hope it helps you make the best decision for you and I wish you good health. http://endocrinediseases.org/thyroid/thyroid_nodule_fna.shtml
Wishing you well,
Shelia0 -
Hurthle cellEmma_lou said:hurthle cell lesion
Hi,
i have just been diagnoised with a benign hurthle cell lesion after having a fine needle aspiration biopsy. But have since read on the internet that it is not possible to tell if hurthle cell lesions are benign or malignant from results of a FNA.
Im now really confused...has anyone else been told the same thing?
thanks
Emma
Hi, Emma
You can not tell if the hurthle cell lesion is benign or cancer till they are remove and examined, my understanding it has something to do with the growth pattern of the cells. I was dx with hurthle cell neoplasm in Jan of this year with hashimoto thyrioditis decided to try levothryroxine to see if it would decrease the size of the nodule for 3 months but it got bigger. Had a TT on 05/21/12 and biospy results on friday and it came back as hurthle cell carcinoma. I have f/u appointments with my surgeon and endo in June. There is a highter percent that it is benign than cancer but really they are just numbers on a piece of paper. Let me know how everything turns out.
AmandaJo0 -
New to this high I am new to both the site and the HCCAliceP said:Glad you are getting a second opinion
Good for you! A second opinion is a wise decision. I wish I had been more agressive when I was originally diagnosed with HCC in Sept. 2006.
I had a TT then and was told all is well; the cancer is gone. I did not receive any post operative treatments. I took my surgeon's word for it that I did not need any oncology follow up. I was followed by my PCP and an endocrinologist. I had a body scan after 6 months and again after 18 months. After that just ultrasounds and blood test every 6 months. None of the tests showed any abnormalities. My tg was at 0 in January 2010. In fact it never did rise even when I had two large tumors.
Feb. 2010 I felt a nodule on my neck. I insisted on surgery. It was recurrant HCC. In May I felt another mass and underwent a bilateral neck dissection. There were 2 HCC tumors and several lymph nodes removed. Since then I have had an I-131 treatment and am undergoing EBR treatments now.
I regret not being better informed back in 2006. It is very difficult to find doctors who are familiar with HCC. This time I asked very pointed questions about their experience/knowledge treating HCC. There are a lot of conflicting ideas out there. I've decided to go with an aggressive approach to try to prevent another recurrance.
I wish you all the best and encourage you to follow your gut. I hope you can find a great team of doctors.This is all new to me. I am trying to b e proactive and informed before I meet wsurgeon nextlevel next week. I am only working off my biopsy that I had to ask for although my GP didn't think it was necessary event high the US radiologist suggested it. Anyway where I am in a small town wanting to make sure I,get the best treatments. What 1-131 and EBR. My biopsy says positive for papillary carcinoma malignancy and hurthles cell features
0 -
how has your recovery gone
I was recently diagnosed with hurthle cell cancer. They removed the tumor then the thyroid. No cancer found in the thryoid. Not sure if this is good news or not.
0 -
how has your recovery gonedhunt64817 said:how has your recovery gone
I was recently diagnosed with hurthle cell cancer. They removed the tumor then the thyroid. No cancer found in the thryoid. Not sure if this is good news or not.
It would sound like perhaps it is good news--no spread at initial surgery is good. Your recovery will go better once they get your medications right. Ask lots of questions and don't walk out of the room until the doctor answers you! Good luck.
0
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