Hurthle Cell Carcinoma

Lola48

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

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

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

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

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.

Unknown

This comment has been removed by the Moderator

Lola48

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

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

pfmerriell said:

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

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

pfmerriell

Nocaliman said:

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

Hi, Chris
The week went very
Hi, Chris

The week went very well; dose of!-123 Tue; uptake scan and another dose Wed; thyroid scan and whole body scan thurs; only uptake was in the thyroid area; today's treatment was 130mCu of !-131. No side effects so far; just very tired. After the 2-hour drive home I took a long nap; more tired than hungry. Things seem to be going well. Follow-up WBS next Friday.

Thanks for checking in.

Pat

pfmerriell

Nocaliman said:

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

Hi, Chris
The week went very
Hi, Chris

The week went very well; dose of!-123 Tue; uptake scan and another dose Wed; thyroid scan and whole body scan thurs; only uptake was in the thyroid area; today's treatment was 130mCu of I-131. No side effects so far; just very tired. After the 2-hour drive home I took a long nap; more tired than hungry. Things seem to be going well. Follow-up WBS next Friday.

Thanks for checking in.

Pat

healthysurvivor

hurthle cell
Hi...I had thyroid cancer and it turned out to be hurthle cell. I, like everyone else here, was terrified. I had 2 small children, and was really upset. I had one lobe removed, and then then second lobe 2 weeks later. This was in November, and in February I had the I-131. I am happy to say this all happened 12 years ago!! I am fine, and feel great. The radiation after effects were not too bad - I had some sores in my mouth and throat, and food tasted like metal for awhile. I am now on Synthroid and doing well. Good luck to all of you, and everyone is in my thoughts!!

healthysurvivor

healthysurvivor said:

hurthle cell
Hi...I had thyroid cancer and it turned out to be hurthle cell. I, like everyone else here, was terrified. I had 2 small children, and was really upset. I had one lobe removed, and then then second lobe 2 weeks later. This was in November, and in February I had the I-131. I am happy to say this all happened 12 years ago!! I am fine, and feel great. The radiation after effects were not too bad - I had some sores in my mouth and throat, and food tasted like metal for awhile. I am now on Synthroid and doing well. Good luck to all of you, and everyone is in my thoughts!!

more
I just read the other posts and I can honestly tell you we all feel like that when we find out. Cancer. Jeez. I was, as I said, terrified. I do have some trouble with my left parotid gland swelling up once in awhile...if I smell something really good, and like Pavlov's dog, start to salivate. It makes me look like a frog!lol But the nuclear med doc says it's damage from the I-131. As for insomnia, boy, I can sure tell you that for years I would panic if I felt strange, or thought I felt a lump and would constantly touch my neck. It's normal. I am an RN and sometimes I think a little knowledge is too scary. Lee

misscancergirl

yep. Hurthle cell in 1992.
I had hurthle cell thyroid carcinoma in 1991 at age 32. Since then, melanoma 2x and breast CA in 2006.

tessdockery

sr_mccreery said:

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.....

Hurthle Dx September 2006
Hello all

I have just joined the group but am so happy to report that I am cancer free at the time! I am 28 years old and was diagnosed when I was about 20 weeks pregnant with my daughter (who is healthy as she can be)! I underwent a partial thyroidectomy at 18 weeks, found out it was Hurthle Cell, was able to carry Sophia to term and went in for the total thyroidectomy about a month after delivering Sophia. I was treated in August 2007 with Radioactive Iodine, which showed an uptake in the thyroid bed and I was put into isolation and given the full dose of RAI. I can say that the worst part of my treatment was the low-iodine diet. Isolation for 24 hours was difficult, but I made it through just fine and with a better appreciation for what I have in life. Six months later, I was treated with a tracer dose of RAI, followed by full body scans and luckily, those scans came back clean. This past April, my endo approved for me to take the Thyrogen injections as opposed to going hypo while prepping for treatment. I still had to follow the low-iodine diet, but atleast my body was not hypo and worn down from not have my meds. The results from those scans also came back clean! I am now on a two year break from treatment!!!

I am so thrilled to report that I am now pregnant with my second child, a little boy, who will be with us in January 2010. Cancer is by far the scariest battle I've fought. It's filled with ups and downs and just not knowing what havoc may be going on inside your body. I know, it's hard. BUT life goes on and you learn to deal with it the best you can. I still have days when I think it could come back...and it could. But I refuse to live my life wondering "what if". The best advice I have is to get a good endo...one that knows his stuff and one that is compassionate to your specific situation. I can say with 100% certainty that I have the best endo in the world...I would argue with anyone. He saved my life and has given me back the reassurance and confidence in my body that I lost. My life will never be the same but I'm grateful for that.

If anyone has any questions about my story, just let me know. I was so lost when I was diagnosed, this is such a great support site.

Nocaliman

pfmerriell said:

Hi, Chris
The week went very
Hi, Chris

The week went very well; dose of!-123 Tue; uptake scan and another dose Wed; thyroid scan and whole body scan thurs; only uptake was in the thyroid area; today's treatment was 130mCu of I-131. No side effects so far; just very tired. After the 2-hour drive home I took a long nap; more tired than hungry. Things seem to be going well. Follow-up WBS next Friday.

Thanks for checking in.

Pat

Hi Pat
I was thinking about you this morning so I decided to drop you a line to see how your doing. Hope things are well. Any side effects from the 131? I had a few delayed side effects after the last time we talked. Lost my taste.....everything tasted like it needed salt. It's coming back now. I work a pretty physical job and when I first got back to work I think the sweat on my head was radioactive and irritated my scalp. Also some weird new throat and jaw pain.

How about you? how are you feeling? How did your scan come out?

Hope things are well.
Chris

Nocaliman

healthysurvivor said:

more
I just read the other posts and I can honestly tell you we all feel like that when we find out. Cancer. Jeez. I was, as I said, terrified. I do have some trouble with my left parotid gland swelling up once in awhile...if I smell something really good, and like Pavlov's dog, start to salivate. It makes me look like a frog!lol But the nuclear med doc says it's damage from the I-131. As for insomnia, boy, I can sure tell you that for years I would panic if I felt strange, or thought I felt a lump and would constantly touch my neck. It's normal. I am an RN and sometimes I think a little knowledge is too scary. Lee

Hi Lee
Thank you for posting. I think it gives us all hope that things will be OK for us.

Thanks again for posting.
Chris

Nocaliman

Rita C said:

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

Hi Rita
Thanks for the song tip. I downloaded it and It's a beautiful song.

Many Blessings back to you and may God bless you.

Chris

pfmerriell

Nocaliman said:

Hi Pat
I was thinking about you this morning so I decided to drop you a line to see how your doing. Hope things are well. Any side effects from the 131? I had a few delayed side effects after the last time we talked. Lost my taste.....everything tasted like it needed salt. It's coming back now. I work a pretty physical job and when I first got back to work I think the sweat on my head was radioactive and irritated my scalp. Also some weird new throat and jaw pain.

How about you? how are you feeling? How did your scan come out?

Hope things are well.
Chris

Hi Chris
I had started a new thread, but I'll repeat it here:

I have completed my RAI treatment and the scan looks good; no sign of cancer any where else. I am now taking Levoxyl (112 mcg) and will have my first blood work at the end of October. My pre-treatment thyroglobulin level was low, so the endo is optimistic. I had some neck pain/tenderness, sore throat after the RAI, but mostly the fatigue has been the hardest thing.

I also have been having some delayed side effects: some sores in my mouth and everything I drink tastes salty; and the taste of food comes and goes. I'm pretty spent by the end of the day; would be nice to be able to work just half-a-day for a while, but that's been tough. I am planning a vacation the end of the month to visit friends and family.

Thanks for checking in. In a strange quirk, I've just heard about another woman I know here who's been diagnosed and will have RAI next week; we even have the same endo and surgeon. Our sons were friends in high school. Just too weird.