Does anyone have Hurthle Cell Carcinoma diagnosis?

Lola48

Hi there:

I'm trying to talk with anyone who might have Hurthle Cell Carcinoma. It's a rare thyroid cancer and I would like to find someone to share info and experience.

Thanks

pfmerriell

I was diagnosed with Hurthle
I was diagnosed with Hurthle Cell in July. I have had two surgeries to remove my thyroid and am now in the prep phase for the radioactive iodine scans and treatment. I ceased the thyroid replacement last week (cytomel) and started the low iodine diet today. Since I stopped my meds, I feel okay so far - just a little more tired. I begin the treatment Sep 8.

emma54

Make sure you rest!
Make sure you rest! And good luck to both of you.

Lola48

emma54 said:

Make sure you rest!
Make sure you rest! And good luck to both of you.

Thanks Emma!

Thanks Emma!

Lola48

pfmerriell said:

I was diagnosed with Hurthle
I was diagnosed with Hurthle Cell in July. I have had two surgeries to remove my thyroid and am now in the prep phase for the radioactive iodine scans and treatment. I ceased the thyroid replacement last week (cytomel) and started the low iodine diet today. Since I stopped my meds, I feel okay so far - just a little more tired. I begin the treatment Sep 8.

hurthle cell
I was diagnosed back in Jan. 2008, and had complete thyroidectomy on Feb 14, 2008. I was told whenever the Drs. see Hurthle cell, they don't know for sure until thyroid removal whether it's malignant. What are/were your symmptoms?

The diet is hard the first time around but I have lots of good tips and ideas for when you are starving an needin a quick fix.

I stayed on my thryoid med and had the thyrogen shots--did they mention that to you?

Mellz

Hurthle Cell
Hi
I was diagnosed with HCC about a year ago and underwent total thyroid removal and radioactive iodine treatment. My bloods have gone a little haywire at the moment so am about to have a PET scan as they think it has spread. I was not aware that the whole body scan only picks up if you have hurtle cell still in thyroid not that you have hurthle cell anywhere else. I guess my point is please insist on a PET scan as this is really a good way to baseline and then monitor, as well as your bloods.

pfmerriell

Lola48 said:

hurthle cell
I was diagnosed back in Jan. 2008, and had complete thyroidectomy on Feb 14, 2008. I was told whenever the Drs. see Hurthle cell, they don't know for sure until thyroid removal whether it's malignant. What are/were your symmptoms?

The diet is hard the first time around but I have lots of good tips and ideas for when you are starving an needin a quick fix.

I stayed on my thryoid med and had the thyrogen shots--did they mention that to you?

Other than the nodule on my
Other than the nodule on my neck, which my primary care doc found last fall, I had no symptoms. The initial ultra sound showed a "cold" nodule, but the fine needle aspiration didn't show anything. Now we know that the cancer wasn't able to be diagnosed until after the thyroid was removed. The right side nodule tested positive for Hurthle Cell; they found no cancer in the left lobe when that was removed in the second surgery. And my thyroid levels were always within the normal range.

My endocrinologist indicated going off the meds and the diet are his preferred prep for the RAI. I was on cytomel right from surgery, so it was easier to stop - goes out of your system faster.

I'm not having too much trouble with the diet so far; luckily it's summer and fresh fruits and veggies are easy to come by. The hardest thing is getting back to cooking and taking the time to prepare food rather than just grabbing something pre-made.

pfmerriell

Mellz said:

Hurthle Cell
Hi
I was diagnosed with HCC about a year ago and underwent total thyroid removal and radioactive iodine treatment. My bloods have gone a little haywire at the moment so am about to have a PET scan as they think it has spread. I was not aware that the whole body scan only picks up if you have hurtle cell still in thyroid not that you have hurthle cell anywhere else. I guess my point is please insist on a PET scan as this is really a good way to baseline and then monitor, as well as your bloods.

Thanks for the tip about the
Thanks for the tip about the PET scan. I'll be sure to ask about that.

jules123

Hurthle Cell Cancer
Hi, I'm new to the site. I have had a thyroid goitre for four years and at the time had two needle biopsies which came back clear. Recently I had trouble with the goitre as it was pressing on my windpipe while I was trying to sleep. I had a left lobe thyroidectomy and the results were that I had Follicular Thyroid Cancer (hurthle cell) invasive. At the time I didn't ask any questions as I was trying to take it all in. I have now had the other lobe removed and am awaiting results. It would be great to share experience with you.

thanks

mainstreet39154

jules123 said:

Hurthle Cell Cancer
Hi, I'm new to the site. I have had a thyroid goitre for four years and at the time had two needle biopsies which came back clear. Recently I had trouble with the goitre as it was pressing on my windpipe while I was trying to sleep. I had a left lobe thyroidectomy and the results were that I had Follicular Thyroid Cancer (hurthle cell) invasive. At the time I didn't ask any questions as I was trying to take it all in. I have now had the other lobe removed and am awaiting results. It would be great to share experience with you.

thanks

hurthle cell
I was diagnosed with HCC in April this year. It takes awhile to get used to the idea. Most of the time I don't think much about it, but some days it weighs heavily on me. I am awaiting an appointment at MD Anderson for 2nd opinion. I have a great local endo. Mine was large (4.7 cm) with vascular and capsular invasion. So far it's been a pretty smooth ride but because it is rare and I am 41 years old, we agreed a 2nd opinion may be in order. I have researched and continue to research and read up on it. Be careful about reading message boards. I have to remind myself it is just people posting their personal experiences and not typically medical professionals. Let me know if I can lend any info I have found. Good luck on your journey. Where are you being treated?

jules123

mainstreet39154 said:

hurthle cell
I was diagnosed with HCC in April this year. It takes awhile to get used to the idea. Most of the time I don't think much about it, but some days it weighs heavily on me. I am awaiting an appointment at MD Anderson for 2nd opinion. I have a great local endo. Mine was large (4.7 cm) with vascular and capsular invasion. So far it's been a pretty smooth ride but because it is rare and I am 41 years old, we agreed a 2nd opinion may be in order. I have researched and continue to research and read up on it. Be careful about reading message boards. I have to remind myself it is just people posting their personal experiences and not typically medical professionals. Let me know if I can lend any info I have found. Good luck on your journey. Where are you being treated?

hurthle cell
Hi mainstreet, I live in England and have had my operation at Castle hill hospital, Hull. When I go back to the clinic next week I should find out when I will be having my radioactive iodine treatment.
Speak to you soon.

Unknown

This comment has been removed by the Moderator

sfl67

mainstreet39154 said:

hurthle cell
I was diagnosed with HCC in April this year. It takes awhile to get used to the idea. Most of the time I don't think much about it, but some days it weighs heavily on me. I am awaiting an appointment at MD Anderson for 2nd opinion. I have a great local endo. Mine was large (4.7 cm) with vascular and capsular invasion. So far it's been a pretty smooth ride but because it is rare and I am 41 years old, we agreed a 2nd opinion may be in order. I have researched and continue to research and read up on it. Be careful about reading message boards. I have to remind myself it is just people posting their personal experiences and not typically medical professionals. Let me know if I can lend any info I have found. Good luck on your journey. Where are you being treated?

Hurthle Cell Diagnosis
I was diagnosed in July 09 after total thyroidectomy; my tumor was 3.5cm and I am a 59 year old female. I had the I-131 in September, was given 125 mcg's Synthroid after total body scan. My TSH levels are 1. and I have no idea if that is where they should be. I am scheduled to see my endo next week, first appointment since procedure. I live in a rural area, my doctors are about 100 miles away. Any information you could share about your experience would be greatly appreciated. I have done a great deal of reading online, but nothing compares to actual knowledge and experience. I have a considerable amount of pain in the right side of my neck, this is the side of the tumor; the left lobe had no sign of malignancy. My surgeon did a modified throat dissection at time of surgery, I'm not sure if the pain I have is due to scar tissue, inflamation or other issues. The tumor was deeply embedded in my throat was also attached to my trachea, so I keep a scratchy throat. I would appreciate hearing about your experience. Thank you

wlangley

sfl67 said:

Hurthle Cell Diagnosis
I was diagnosed in July 09 after total thyroidectomy; my tumor was 3.5cm and I am a 59 year old female. I had the I-131 in September, was given 125 mcg's Synthroid after total body scan. My TSH levels are 1. and I have no idea if that is where they should be. I am scheduled to see my endo next week, first appointment since procedure. I live in a rural area, my doctors are about 100 miles away. Any information you could share about your experience would be greatly appreciated. I have done a great deal of reading online, but nothing compares to actual knowledge and experience. I have a considerable amount of pain in the right side of my neck, this is the side of the tumor; the left lobe had no sign of malignancy. My surgeon did a modified throat dissection at time of surgery, I'm not sure if the pain I have is due to scar tissue, inflamation or other issues. The tumor was deeply embedded in my throat was also attached to my trachea, so I keep a scratchy throat. I would appreciate hearing about your experience. Thank you

Hurthle Cell Carcinoma
There is more information in this Discussion Board

http://csn.cancer.org/node/171280

BellsAngel69

Yes, I have Hurthle Cell cancer
In Dec. 2003 I found a lump in my neck under my collar bone, purely by chance. It was an enlarged lymph node and I had it removed. I was then diagnosed with Thyroid cancer. I had a total thyroidectomy, then the RAI treatment. For the next two years I did the low iodine diet and uptake scan, and I was clean. The following year my doctor let me skip the scan because my TSH levels had been undetectable. I saw my doctor every six months and had blood tests the whole time and had been fine. Six months after skipping the scan I went for blood tests and my TSH levels were rising. They put me on the diet and did another scan. Not even five minutes after I left, they called me on my cell to ask if I could come back. They wanted to do something else. I was thinking, what the hell? I went back and they did another scan. When the results came back, it showed uptake in my left posterior hip. Next, I had another RAI treatment in the hospital to take care of the reoccurence. After, I had another scan and it showed I was clean. Six months later, I had another blood test and my TSH levels were even higher, so they ordered a PET scan. The PET showed the same spot in my hip. The RAI didn't absorb into the bone, so it was ineffective. I had surgery a few months later to remove the dime sized spot on my bone. Post surgery, my TSH levels hadn't changed, but they weren't concerned. Six months later, my blood tests showed my TSH levels were even higher so I had another PET scan. It was clean and they sent me on my merry way. I just had another blood test in Nov., and after three weeks my doctor called to tell me my TSH level were FOUR TIMES higher than before, in only six months. I totally freaked out. The PET scan showed nothing but my TSH levels are jacked way up. Now, I'm on the low idodine diet yet again, and they are going to do both a PET scan and and low-dose RAI scan to see if anything shows.

Truthfully, I won't be convinced this time if the scan is clean. I'm going to seek out another doctor for another opinion. I don't care where I have to go, or what tests I have to have done, I won't be satisfied. My TSH level is 121. Back in May it was 29. When my level first started to rise, it went from 2, to 4, then 9. My doctor didn't even tell me my TSH was elevating until it went up to 9. I felt betrayed and told him that I had the right to know. He said it wasn't that high so he wasn't too concerned. The bottom line is it should be zero and when it was rising he didn't tell me. Post surgery my level was 15, then 29, now it's 121. So if the scan says I'm clean, I'm not going to believe it.

I'm very frustrated, but have kept upbeat this entire time. I admit, I've had my bad moments, but I'm not going to let this beat me. The hardest part is the initial diagnosis was so promising, and here I find myself with my second reoccurence in two years, and it just makes me so angry. They paint this rosey picture. They told me thyroid cancer is 99% curable and very treatable, yet I find myself in this situation.

I'm 49, I was 43 when diagnosed. I have an 18 year old daughter in college and a 16 year old son in high school. I plan to live a long, happy life, long enough to be a pain in the butt to my kids. Hey, what goes around, comes around, you know?

I just hate the waiting part, and there is always a seed of doubt in the back of my mind. Is it gone, or still there, lurking, waiting to rear it's ugly head again?

It's hard, but I'm so happy I've found this place for support. I'm sure it will make all the difference in the world.

No matter what your doctors say, don't settle for an answer. If you're not happy with what they're telling you, get a second opinion or as many as you need until your satisfied.

Hurthle Cell cancer is a very tricky disease. It can come back, so you should always follow through with tests, and don't ever think it's totally gone, because chances are somewhere down the line it will come back. It's just a matter of when and where. I'm not trying to be pessimistic, but it't the truth.

‹ wondering if anyone had symptoms prior to diagnosis Thyroid Cancer Recurrence ›

BellsAngel69

Lola48 said:

hurthle cell
I was diagnosed back in Jan. 2008, and had complete thyroidectomy on Feb 14, 2008. I was told whenever the Drs. see Hurthle cell, they don't know for sure until thyroid removal whether it's malignant. What are/were your symmptoms?

The diet is hard the first time around but I have lots of good tips and ideas for when you are starving an needin a quick fix.

I stayed on my thryoid med and had the thyrogen shots--did they mention that to you?

To Lola
What? Who told you they don't know for sure if Hurthle cell is malignant until a thyroidectomy? HELLO!! Hurthle Cell is a form of Thyroid cancer. It's not goiter. Goiter is non-malignant. Wow, I'd get another doctor if your's is telling you Hurthle Cell might not be malignant.

And yeah the diet is hard the first time around, but for me, it's only gotten worse every time after. I think it totally sucks. I can't get good veggies or fruits this time of year where I live. I'm in hell right now. I'm on the diet and awaiting another PET and a low-iodine scan. Sorry, but they sugar coat it, saying it's not bad, so many things to eat. NOT!! More like you can barely eat anything, and have to prepare and cook and buy thing's you'd never normally have on hand just to try to make your food taste good.

I hope I'm not offending anyone, but the diet sucks. Three weeks for me and I'm only on day five. It's especially hard in the winter. I'm so hungry, all the time. Nothing fills me up, nothing tastes good, nothing satisfies. Just salad after salad after salad. I can't stand it, I really can't.

Anyone else have a hard time with the diet?

samanjan

BellsAngel69 said:

Yes, I have Hurthle Cell cancer
In Dec. 2003 I found a lump in my neck under my collar bone, purely by chance. It was an enlarged lymph node and I had it removed. I was then diagnosed with Thyroid cancer. I had a total thyroidectomy, then the RAI treatment. For the next two years I did the low iodine diet and uptake scan, and I was clean. The following year my doctor let me skip the scan because my TSH levels had been undetectable. I saw my doctor every six months and had blood tests the whole time and had been fine. Six months after skipping the scan I went for blood tests and my TSH levels were rising. They put me on the diet and did another scan. Not even five minutes after I left, they called me on my cell to ask if I could come back. They wanted to do something else. I was thinking, what the hell? I went back and they did another scan. When the results came back, it showed uptake in my left posterior hip. Next, I had another RAI treatment in the hospital to take care of the reoccurence. After, I had another scan and it showed I was clean. Six months later, I had another blood test and my TSH levels were even higher, so they ordered a PET scan. The PET showed the same spot in my hip. The RAI didn't absorb into the bone, so it was ineffective. I had surgery a few months later to remove the dime sized spot on my bone. Post surgery, my TSH levels hadn't changed, but they weren't concerned. Six months later, my blood tests showed my TSH levels were even higher so I had another PET scan. It was clean and they sent me on my merry way. I just had another blood test in Nov., and after three weeks my doctor called to tell me my TSH level were FOUR TIMES higher than before, in only six months. I totally freaked out. The PET scan showed nothing but my TSH levels are jacked way up. Now, I'm on the low idodine diet yet again, and they are going to do both a PET scan and and low-dose RAI scan to see if anything shows.

Truthfully, I won't be convinced this time if the scan is clean. I'm going to seek out another doctor for another opinion. I don't care where I have to go, or what tests I have to have done, I won't be satisfied. My TSH level is 121. Back in May it was 29. When my level first started to rise, it went from 2, to 4, then 9. My doctor didn't even tell me my TSH was elevating until it went up to 9. I felt betrayed and told him that I had the right to know. He said it wasn't that high so he wasn't too concerned. The bottom line is it should be zero and when it was rising he didn't tell me. Post surgery my level was 15, then 29, now it's 121. So if the scan says I'm clean, I'm not going to believe it.

I'm very frustrated, but have kept upbeat this entire time. I admit, I've had my bad moments, but I'm not going to let this beat me. The hardest part is the initial diagnosis was so promising, and here I find myself with my second reoccurence in two years, and it just makes me so angry. They paint this rosey picture. They told me thyroid cancer is 99% curable and very treatable, yet I find myself in this situation.

I'm 49, I was 43 when diagnosed. I have an 18 year old daughter in college and a 16 year old son in high school. I plan to live a long, happy life, long enough to be a pain in the butt to my kids. Hey, what goes around, comes around, you know?

I just hate the waiting part, and there is always a seed of doubt in the back of my mind. Is it gone, or still there, lurking, waiting to rear it's ugly head again?

It's hard, but I'm so happy I've found this place for support. I'm sure it will make all the difference in the world.

No matter what your doctors say, don't settle for an answer. If you're not happy with what they're telling you, get a second opinion or as many as you need until your satisfied.

Hurthle Cell cancer is a very tricky disease. It can come back, so you should always follow through with tests, and don't ever think it's totally gone, because chances are somewhere down the line it will come back. It's just a matter of when and where. I'm not trying to be pessimistic, but it't the truth.

‹ wondering if anyone had symptoms prior to diagnosis Thyroid Cancer Recurrence ›

I found two medical texts on Amazon which, while not for the lay person, were very informative. They are "heavy" reading, but most of us have already educated ourselves about RAI, thyroglobulin levels, TSH, rhTSH,etc., so it made the digestion of material much simpler.
I also found two of my main physicians listed in one of the studies!

The books are, Management of Thyroid Cancer and Related Nodular Disease, by MCDougall, and Essentials of Thyroid Cancer Management, by Amdur and Mazzaferri. I found the first through this website from another person with HCC and the second I ordered and found even more informative.
As I said, these are for the medical profession, but quite full of info.

BellsAngel69

samanjan said:

I found two medical texts on Amazon which, while not for the lay person, were very informative. They are "heavy" reading, but most of us have already educated ourselves about RAI, thyroglobulin levels, TSH, rhTSH,etc., so it made the digestion of material much simpler.
I also found two of my main physicians listed in one of the studies!

The books are, Management of Thyroid Cancer and Related Nodular Disease, by MCDougall, and Essentials of Thyroid Cancer Management, by Amdur and Mazzaferri. I found the first through this website from another person with HCC and the second I ordered and found even more informative.
As I said, these are for the medical profession, but quite full of info.

Thanks Elaine
You are my guardian angel right now!

saml1992

BellsAngel69 said:

Thanks Elaine
You are my guardian angel right now!

hey i am 17 and have been
hey i am 17 and have been diagnosed with hurtle cell cancer in my thyroid i am currently in preparation for my radio iodine treatment and have started my low iodine diet.

any tips anyone?

10acity

saml1992 said:

hey i am 17 and have been
hey i am 17 and have been diagnosed with hurtle cell cancer in my thyroid i am currently in preparation for my radio iodine treatment and have started my low iodine diet.

any tips anyone?

hey i am 17 and have been
Have you had your thyroid removed?

saml1992

10acity said:

hey i am 17 and have been
Have you had your thyroid removed?

yeah i have had a full
yeah i have had a full thyroidectomy i was just wandering in there were any tips on diet lol im finding it hard