Hurthle Cell Carcinoma

samanjan said:

The reference you make to lungs and bones are the "usual" places that Hurthle Cell is found when it recurs. Hurthle is found in the neck. The third place know for recurrence is the central nervous system, although I personally know of an instance where it was found in the liver. Whether it comes back or not is usually determined by what they found when they did your initial stage of TNM after surgery to remove our thyroid. Ask for pathological report. How invasive was the cancer u[pn detection...which stage I,II,III, IV? Node involvement? Distant metastis?

You are right about one thing...it is a radiosensitive tumor. Avoid unnecessary x-rays including dental, if possible.
Good luck,
Elaine

Hi I'm new and feel very alone with the hurthle cell
Samanjan, Hope this note finds you well,you seem to have alot of knowledge about the hurthle cell. I am so happy to find this web site ,I have tried to find out as much as possable,there is not much out there.
I'm 46 yr old female with hurthle cell ,had a full neck disection, 39 lympnodes removed found a small spot on lung.just had very strong 1-31 treatment dr. said it did not take & that it had spread to the other side under my coller bone. so Im getting 12 weeks off to see what surgen I will need for my next sugery. I love my doc & surgen . Sorry to dump all this no one seems to get it. (its a good cancer to have, you should feel better now, but you look good.) my surgery was the last week in sept went to work at 3 weeks for 2 weeks then started the tsh & 1-31 treatment hospital sick as a dog,With a smile .
Thanks for listening
God bless, Carol

samanjan said:

soujourn and women following RAI 131 treatment
Dear Carol,
I think contacting me at my regular email is a good place to start. I have quite a few
questions to begin with.
I would like you to find your original pathology, date of surgery, thyroidectomy, and how long afterwards the neck dissection, etc., etc.
Please write me at samanjan@bellsouth.net.
I also would like to know stage at time of original surgery.
How long after diagnosis was the first recurrence?
Where was the neck dissected? There are seven ( I-VII) levels and two are usually never touched. Schematics are available in a book I have which I can discuss with you or scan for you.
BTW, I thought only my family used "as a dog!"
Do a bit of homework for me and let me hear from you asap.
I also understand your frustration with the clueless people!!
God bless you as well.
Elaine

P.S. For all you women out there...post RAI131 can everyone say, "dry?" This is especially true for anyone post menopause. Eyes, mouth, and I could go on. About where I am not going...there is hope and there is medication. Don't depend on your doctor(especially a male) to give this a second thought. Be your own advocate, and ask for numbing agent, Lidocaine Hydrochloride Jelly USP,2%. It is prescription medication.
There is also hope, it gets better:)

Brenda
Brenda, I lost your email somehow and need you to contact me again.
Elaine

samanjan said:

Great News!!!
Just at Johns Hopkins last week and my doctor pronounced me "cancer free" for now. What a nice Thanksgiving present. Nearly two years into this abyss, but not ready to give in!
I only need an ultrasound yearly now and a visit with my endocrinologist twice yearly. I get blood work done every three months since I am self pay. I feel there is no need to let something go an extra three months, especially Hurthle Cell Carcinoma.
It has been a stretch getting my Synthroid adjusted so that I have adequate energy without making my body hyperthyroid, but it seems we have managed that as well.
I'll keep checking on everyone.
Have a wonderful holiday.
Elaine

Great News!
Elaine, I am so happy to see you and others back here! I thought they dropped our forum and I was left to wonder about everyone. Congratulations to you after so long holding on. I hope you know how much you offer the newcomers with your encouragement and information!

I can report that my daughter (18) has had her 2nd lobectomy and successfully rehabilitated her singing voice. Tomorrow we start Thyrogen to prepare for her radioiodine ablatement therapy followed by a body scan net week. Hopefully, it will be over except for the periodic scans and replacement thyroid the rest of her life.

I managed to get the insurance company to pay for the Thyrogen so she won't have to go hypo and miss her intensive dance routine. But I had to ride the doctor to get it accepted. It all took lots of "Google-ing" to understand all of the proceedures, and new vocabulary. I encourage everyone to figure out how to do basic research because most of the doctors won't tell you much beyond the mechanics of treatment.

Now, does anyone know what happened to "Grace92" from the prior page? She was 17, newly diagnosed, and quite worried. I'd like her to get in touch with my daughter for support.

I will return here to see any reports.

Again, Elaine, I can't say how much you and the forum have helped us. Please stick around!

My best for the Holidays... Biskie AKA Linda.

csm2007 said:

Is there anyone out there with Hurthle Cell Thyroid Cancer?
Hello,

I am new to the boards and I am eager to learn everything about my Thyroid cancer! I was just diagnosed with Hurthle Cell Carcinoma after my Thyroid surgery on December 13th. I am a 33 yr old female, and as I understand it Thyroid Cancer is rare, but Hurthle even more so. My tumor was removed with the left lobe and ithmus. The pathology report came back as a Hurthle Cell Carcinoma. The tumor weighed 33 grams and was 4x5 cm. I was really hoping that someone may have advice of what I may expect at this point? I went to my one week follow up this Monday and was given the initial pathology report information. I was then asked to come back to the surgeon on the 29th of December for additional consultation and discuss the results of the pathology report. I believe out of kindness they are waiting to discuss the pathology further because it is Christmas week and they are trying to give me a break....But the wait is torture! I really hope that I am not in for a second surgery! From what I read online, I think I am, due to the pathology and size of my tumor.....I have also read that Hurthle cells do not "take up" the I-131 radioactive iodine, if so, what do they use instead? Thanks for the advice, I have way more questions than answers at this point. Since this is the week of Christmas, I understand everyone is with their family and not reading the boards, so I may just have to wait! Merry Christmas to all of you and thanks for your help!

Hurthle Cell
Hi csm,
I also had HCC. My initial surgery was last July when they removed a large tumor from the right lobe and isthmus. My tumor was similar in size to yours, 4.7cm. The pathology report came back positive for HCC. The recommendation was to have a total thyroidectomy 2 weeks later. The second surgery was actually easier than the first, and I felt good within 3 days.

I had the 131 treatment 6 weeks after surgery, in September. Now, I am on synthroid and feeling well. I'll have my bloodwork tested every 3 months. Should there be a cancer recourance it will show up with raised tg levels.

Good luck to you. I know it's scary, but hang in there. This website is a great resource for information.

LizP said:

Hurthle Cell
Hi csm,
I also had HCC. My initial surgery was last July when they removed a large tumor from the right lobe and isthmus. My tumor was similar in size to yours, 4.7cm. The pathology report came back positive for HCC. The recommendation was to have a total thyroidectomy 2 weeks later. The second surgery was actually easier than the first, and I felt good within 3 days.

I had the 131 treatment 6 weeks after surgery, in September. Now, I am on synthroid and feeling well. I'll have my bloodwork tested every 3 months. Should there be a cancer recourance it will show up with raised tg levels.

Good luck to you. I know it's scary, but hang in there. This website is a great resource for information.

csm2005
You can almost certainly expect an additional surgery. My question is, did you have fine needle aspiration and if so, did it not come back as hurthle neoplasm? I ask because if it did, I am quite surprised that they did a partial thyroidectomy to begin with.
As for the R131, while not perfect by a long shot, is our only option and hope in killing off remant thyroid cells. Be prepared for some dose and a bit of time at arms length with others. It is not as horrible as you are led to believe.

Depending on where you live and which hopital you go to is how much knowledge you can expect. It is rare, aggressive, and sneaky cancer. It is also manageable when caught early(no lymph involvement.)Ask questions about how invasive it is, etc. Your age and the size of tumor with no lymph involvement and no distant cancer sites would most likely read T2N0M0 (Stage two based on your age and tumor size.)

Blood tests and full neck ultrasounds are your best bet once you have had the 131. It will serve you well to be your own advocate and not depend on others to tell you when to have lab work done. I do mine every three months, not six. Why give anything an extra three months that we don't want?

Good luck and question away. There are some great medical texts on Amazon as well. I am nearly two years ahead of you with this. My surgery was 2/2009.
Elaine
Merry Christmas and fingers crossed for a good new year!

samanjan said:

csm2005
You can almost certainly expect an additional surgery. My question is, did you have fine needle aspiration and if so, did it not come back as hurthle neoplasm? I ask because if it did, I am quite surprised that they did a partial thyroidectomy to begin with.
As for the R131, while not perfect by a long shot, is our only option and hope in killing off remant thyroid cells. Be prepared for some dose and a bit of time at arms length with others. It is not as horrible as you are led to believe.

Depending on where you live and which hopital you go to is how much knowledge you can expect. It is rare, aggressive, and sneaky cancer. It is also manageable when caught early(no lymph involvement.)Ask questions about how invasive it is, etc. Your age and the size of tumor with no lymph involvement and no distant cancer sites would most likely read T2N0M0 (Stage two based on your age and tumor size.)

Blood tests and full neck ultrasounds are your best bet once you have had the 131. It will serve you well to be your own advocate and not depend on others to tell you when to have lab work done. I do mine every three months, not six. Why give anything an extra three months that we don't want?

Good luck and question away. There are some great medical texts on Amazon as well. I am nearly two years ahead of you with this. My surgery was 2/2009.
Elaine
Merry Christmas and fingers crossed for a good new year!

Hurthle cell csm2007

Samanjan,

Thanks for your comments! I did have a FNA it came back as follicular neoplasm, at first they believed it was probably follicular, so the surgeon only did the partial. During the surgery to remove the left node and bridge the frozen section came out Hurthle, but he said prob 80% benign/20% chance that it would be hurthle carcinoma. Unfortunately I was the 20% and it came back hurthle carcinoma. As I mentioned in another post I did find out from my endocrine doctor yesterday that I will be having the surgery to remove the remaining thyroid. He and the oncology surgeon had spoken the evening before my appointment yesterday. I will keep reading the boards and try to contribute as I learn more. My appointment with the oncology surgeon is tomorrow, and then I will know what day to expect the second surgery. Thanks again!

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.

Had it
Yes, I was diagnosed and had surgery in July 2001. I've had trouble taking levoxyl (thyroid replacement) because it makes my heart race (180+ beats per minute), and I'm pretty miserable taking it. I also switched from Prozac to Zoloft which made my TSH jump from 1.7 to 43. Anyone else have that experience? I'm back on Prozac now and will re-check in 8 weeks to see if there's any difference. What a miserable diagnosis. If I hear one mor health professional say how "lucky" I am to have this instead of a "more serious" diagnosis, I think I'll punch him/her. There's nothing "lucky" about this. Also, my father was diagnosed with thyroid cancer (medullary), and we were both exposed to radiation when he was enlisted in the Army in the 1950's. Anyone else have that experience? It was in the desert near Phoenix, AZ.

LBlackman said:

hurthle cell cancer
I have hurthle cell carcinoma and was diagnosed in Dec. 2004. My Dr. won't let me take Levothyroxine as she states it isn't as stable as synthroid. I have heart palpitations something terrible. It got so bad one night that 15 mg. of valium wouldn't slow it down. My breathing was labored and it felt like a panic attack. I have them a couple weeks out of the month. I was taking Prozac, but it gave me migraines so I stopped taking anything like that, but I feel like I do need to be on something. I agree, if I hear the words that I am lucky to have this diagnosis I may end up with an assault charge also.

Did your TSH change much
Did your TSH change much when you dropped the prozac?

LBlackman said:

hurthle cell cancer
I have hurthle cell carcinoma and was diagnosed in Dec. 2004. My Dr. won't let me take Levothyroxine as she states it isn't as stable as synthroid. I have heart palpitations something terrible. It got so bad one night that 15 mg. of valium wouldn't slow it down. My breathing was labored and it felt like a panic attack. I have them a couple weeks out of the month. I was taking Prozac, but it gave me migraines so I stopped taking anything like that, but I feel like I do need to be on something. I agree, if I hear the words that I am lucky to have this diagnosis I may end up with an assault charge also.

HCC, on my 3rd recurrence, 5th surgery May 4th
Yup. I'm on my 3rd recurrence of Hurthle Cell cancer, surgery number 5 coming on May 4th. Long story short, diagnosed with HCC Dec. 2003. TT Feb. 2004, followed by RAI. Subsequent check ups for three years, fine and dandy. 2007 scan showed a recurrence. Had another dose of RAI, but it didn't work. A year later had surgery for a lesion on my left posterior hip. Easy surgery, outpatient, 1 1/2 hour surgery (or procedure, as they like to sugar coat it). Subsequent blood tests showed my thyroglobulin was still rising. Subesequent PET scan in May 2009, clean. Blood tests in Nov. 2009 showed my thyroglobulin had quadrupled since May. Subesequent PET scan in Jan. 2010 showed spots near my stomach. An endoscopy, CT scan and liver biopsy later, metastasis to my liver. Liver resection in March 2010. Subesequent blood tests were clean until Nov. 2010. Thyroglobulin rising again, from undetected below .2 to .3. Blood tests in Feb. 2011 showed elevated thyrglobulin up to 4.5. PET scan showed another metastasis, to the same spot in my left hip bone, just behind the previous disection and bone cement.

If you can believe it, I was actually relieved when my doctor told me it was in my hip bone again. Why? Well, a hell of a lot beter than being in my liver again. That was a really tough surgery. Also, it's basically the same surgery as 2008. He can use the same incision spot, so just will be the same scar. Recovery time is only 3-4 weeks.

Am I happy to have another recurrence? Hell no! But I just thank God it wasn't my liver again. The truth is, I'll never be cured of this cancer, NEVER! I look at it as a nuisance, if you can ever think of any kind of cancer as being a nuisance. It's a disease that's not curable.

So, I will carry on, keep the smile on my face to hide the aggravation and pain, and know it's always 5 o'clock somewhere. I just want to be there, at 5 o'clock, always and forever, whether in reality or just my mind, it will always be happy hour.

To all my sisters and brothers fighting HCC or any kind of cancer, I salute and support you. Though our paths may not be the same, they are parallel.

Hugs, Patti

missythyca said:

new for me: Hurthle Cell suspicious
I'm new to this, within 6 weeks, nodule found, it grew, US done then biopsy. Im seeing the folks at MD
Anderson in Houston. Just got in this week, met surgeon today. Scheduled lobectomy for may 18, 2011. yay i'm so relieved. no spread either, i've been a basket case!
anyone like to chat one on one about Hurthle cell, I'm game.
melissa@kanapapijosa.com

thanks

hurthle cell
I hope your surgery goes well. My cousin was diagnosed in Houston with thyroid cancer, hers is not hurthle cell like mine is. I haven't found very many people with hurthle cell cancer at all. I was 37 when I was diagnosed and according to my Dr. that is very rare for a young female to be diagnosed with that. Now I am seeing more and more young females diagnosed with it. I am 42 now. I am preparing for my fifth scan. The others have come back clean, but I have never been on any food restrictions prior to my scans and I was doing the atkins diet, which has alot of high iodine foods and the nurse told me that may have concealed some cancer growths. I am doing a lighter form of the low iodine diet on my own so we will see how this scan turns out.
My cousin lives in Houston and said the medical care there is wonderful. They are very knowledgeable and informative. I think with hurthle cell, since it is so rare, they are still learning as how best to treat it. Are you having both sides of your thyroid removed? Have they diagnosed hurthle cell cancer? There is a non-cancerous hurthle cell. If you are on facebook, there is a page called thyroid 411. There is alot of support there also. If you have any questions, please post them. I didn't know about this website when I was first diagnosed but am very thankful for it now.
Blessings
Lynne