Hurthle Cell Carcinoma

nootrino said:

hurtle cell neoplasm
Hi everyone. New user on here. Was wondering if this is the only thread that discusses Hurtle cells issues or if there is another one on this board or elsewhere. I am looking for resources and people who can offer their firsthand experiences. Much appreciated.
Here is my story. 48 year old male. Went to doctor and out of blue he wanted to perform an ultrasound on my thyroid. No symptoms or pain. Thyroid tests normal, albeit now that I look at them they are on the upper normal and lower low of normal (wondering if that in itself is a sign of thyroid issues that doctors ignore). Anyways, he told me 1.5cm cyst in left lobe. "99 % of these are usually nothing". I asked "what would you do". He said that if he were in my shoes he's have an FNA done, which I did and two weeks later found out "suspicious for Hurtle Cell neoplasm". Don't remember exact veriage but variant size Hurtle cells found single and clustered. "some transgressing vessels". "no lymphocytes". "erratically placed macronucleoli". Sorry for spelling but doctor said the result was "not completely normal" but NOT CANCER. Hmmm... Not sure how he would know that other than perhaps the FNA results offered some insight. In any case, picked doctor in Manhattan who is subject matter expert and saw him a few weeks ago. He advised removal of left thyroid and isthmus. Will do frozen section during surgery although he doesn't have much confidence in that he mentioned. Final pathology will indicate whether cancer or not, which he said is about 20% likelihood for my case, age, etc. Although I'm 48 he felt I fell more into the under 45 statistical group, or perhaps he's just being optimistic. So surgery in a few weeks.
Some questions: my ultrasound was in late August, surgery in December: am I waiting too long. Both internist and thyroid surgery didn't feel urgency but said must have this dealt with no later than 3 months.
Has anyone had similar FNA results, profile and tumour size?
Understandably while I've been told not to get worried, there is a chance this could be cancer but surgeon said I'd enter at Stage 2. Which still frightens me as I have small children and there is very little information about this type of cancer and prognosis on the web. The stuff I have found so far is all over the place.
Anyways, not to rant. I am glad people are posting there stories on here, I've read the entire thread as far back as 2009. I do notice though that people do stop posting after a while. I'm just hoping that this is a sign that they have their condition under control and are living their lives and not dwelling on their conditions too much.

Hurthle Cell
I have Hurthle Cell. In January, they removed my left thyroid. It took 3 weeks to find cancer. Even though they found very few cells, I had a Total Thyroidectomy in April because this is an aggressive type of thyroid cancer. At this point, I almost wish I had left the right side in as I have not felt normal since then. I am either so tired I can barely stay awake or my heart is racing so much I call an ambulance. Before my TT, I had never been in an ambulance. Since the first of the year I have been 4 times.So much for "this won't have much effect other than taking meds"!

catladysue237 said:

Hurthle cell
Did you ever find anyone? I have been diagnosed within the last month and am having trouble relating to my family about this.

Hurtle Cell
Yeah, I, too, had Hurtle cell carcinoma. I am 40 years old, and had a total thyroidectomy at 38. It used to scare the heck out of me, but after a while you just stop dwelling on it so much and take the "what can we do to fix this" approach. Not saying I don't panic after a biopsy awaiting the results, but thus far, I haven't had any reoccurances. I've had no ill effects from the cancer at all. Best of luck to you, and feel free to ask me if you have any questions. Any of you. I am also an RN. Merry Christmas everyone!!!

rebeccamae said:

Stage 4
I don't see where to start a new post so I'll reply here. If someone would like to copy and paste it so others could read it, that would be fine. My husband had his first thyroid surgery in 2006. The last few years he has had lumps removed from his neck about every 6 months. This spring he started having leg pain. He had a scan and found out that it has metastasized to his sacrum. Tumor is impinging sciatic nerve and causing major pain. He frequently has his pain meds upped. He has a patch and is also taking dilodid. I'm not sure of the spelling. Now he has a lump on his head that is also hurtle cell. There is a hole in his skull from it. He has completed radiation and plans to start chemo soon. They have completed clinical trials on Nexavar for hurtle cell and it has helped shrink tumors. Be sure you find out exactly what part of your body is being scanned. We thought his whole body was being scanned, but he was only being scanned to the waist. When they scanned his neck, he thought his head was also being scanned too. This cancer spreads to bone. if you have back or leg pain, waste no time in finding the source of your pain. This is not a pretty picture, but thought I'd post so you know what it can do. The oncologist told him it was unlikely that it would shorten his life spanish. Don't let anyone tell you that!!!

In lungs
Hello everybody, and thanks to everyone for sharing information and thoughts. My dad had his thyroid removed 11 years ago. 18 months ago he found lumps on his neck and had a huge surgery on his neck, in a H shape, to remove lymph nodes etc. We were told the surgery went extremely well. Dad is physically a very strong person and is in really good health (apart from the cancer!) so surgery suits him very well. He had radioactive iodine treatment after this.
However, it spread and is now in both of his lungs (one lobe on each side). I am really, really bad at understanding medical matters but this is one case I don't want to get wrong. My dad is the best dad in the world and I want to make sure he has every chance. I'm in Ireland and was wondering if you all thought he would get better care abroad, and if so where. He had more radioactive iodine treatment before Christmas and we have just been told it didn't work. He has now been referred for possible chemotherapy. From what I've been reading chemo does not work on hurthle cell tumours, or is this cutting-edge stuff they are going to try on him??? Sometimes I wish I was a doctor - at least them I'd know he would get the best care available. So frustrated and angey with myself right now because I am so ignorant and don't know what to do, if you know what I mean. I suppose everyone goes through this! Anyway, please let me know what you think. x

Nocaliman said:

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

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

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

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

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

IrishTheresa said:

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

THE TREATMENT IS WORKING!

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

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

IrishTheresa said:

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

THE TREATMENT IS WORKING!

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

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

nootrino said:

hurtle cell neoplasm
Hi everyone. New user on here. Was wondering if this is the only thread that discusses Hurtle cells issues or if there is another one on this board or elsewhere. I am looking for resources and people who can offer their firsthand experiences. Much appreciated.
Here is my story. 48 year old male. Went to doctor and out of blue he wanted to perform an ultrasound on my thyroid. No symptoms or pain. Thyroid tests normal, albeit now that I look at them they are on the upper normal and lower low of normal (wondering if that in itself is a sign of thyroid issues that doctors ignore). Anyways, he told me 1.5cm cyst in left lobe. "99 % of these are usually nothing". I asked "what would you do". He said that if he were in my shoes he's have an FNA done, which I did and two weeks later found out "suspicious for Hurtle Cell neoplasm". Don't remember exact veriage but variant size Hurtle cells found single and clustered. "some transgressing vessels". "no lymphocytes". "erratically placed macronucleoli". Sorry for spelling but doctor said the result was "not completely normal" but NOT CANCER. Hmmm... Not sure how he would know that other than perhaps the FNA results offered some insight. In any case, picked doctor in Manhattan who is subject matter expert and saw him a few weeks ago. He advised removal of left thyroid and isthmus. Will do frozen section during surgery although he doesn't have much confidence in that he mentioned. Final pathology will indicate whether cancer or not, which he said is about 20% likelihood for my case, age, etc. Although I'm 48 he felt I fell more into the under 45 statistical group, or perhaps he's just being optimistic. So surgery in a few weeks.
Some questions: my ultrasound was in late August, surgery in December: am I waiting too long. Both internist and thyroid surgery didn't feel urgency but said must have this dealt with no later than 3 months.
Has anyone had similar FNA results, profile and tumour size?
Understandably while I've been told not to get worried, there is a chance this could be cancer but surgeon said I'd enter at Stage 2. Which still frightens me as I have small children and there is very little information about this type of cancer and prognosis on the web. The stuff I have found so far is all over the place.
Anyways, not to rant. I am glad people are posting there stories on here, I've read the entire thread as far back as 2009. I do notice though that people do stop posting after a while. I'm just hoping that this is a sign that they have their condition under control and are living their lives and not dwelling on their conditions too much.

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

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

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

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