Hurthle Cell Carcinoma

loispol1 said:

Hi - Hurthle Cells?
I am so sorry you all are goig through this. I can't even imagine your situations. I am busy researching over and over again trying to decide where to go and who to do my surgery. I have seen several surgeons and had a pathology result in the FNA (have trachitis now from that) of a predominence of Hurthle cells in one of the three nodules they examined. Yesterday I was "fired" from a major cancer center here in Florida for asking too many questions. I have severe and extensive allergies which they were not addressing or entering into the electronic medical filing system. They did not return a call in three weeks prior to FNA which i went to by myself (2 1/2 hr drive each way),and i have had three trips so far. Now,although total thoriodectomy is recommended, I now have no surgeon because they have identified me as a problem patient (think of Elaine in Seinfeld episode). The Cancer center experience was so cold, abusive and truly horrible. i am scared, please help!I have had thyroid prob's since 1993 and I have multinoduar goiter and hasimotos DX. Should i just have the surgery here close to home and forget the big cancer centers?

I need a compassionate & expert surgeon to get through all of this.

loispol1
Hi,
I don't know where in Florida the Mayo Clinic is located, but according to their web site they have a branch in Florida. I have referred to their site often since I also have a Hurthle Cell diagnosis. They seem to be specialists in treating this form of cancer. I had a total thyroidectomy in July 09 followed by RAI-131 in September.

I wish you well and hope you find a caring group of doctors very soon.

sfl67 said:

loispol1
I had my first follow-up Feb. 10, the ultrasound showed no new nodules or tumors and the surgeon said the surgery along with the radioiodine had done what he intended. I will have blood work soon, my TSH levels are too high, but hopefully they will come down with an increase in meds. I feel very blessed at this time, but like so many others I can't become too confident that it might not be back, since that is the history of the Hurthle Cell. My endo. was not familiar with this cancer, so my surgeon will handle my follow-up care completely. I am fine except for lack of energy and a cough I can't seem to shake. I have been told to give myself at least a year to feel normal again, so we'll see.

I sincerely hope you can find doctors that can handle your allergic concerns and give you the peace of mind needed to proceed with the procedures necessary. Good luck and let me know how your search goes.

loispol1
Too many questions?????????? You must be kidding. I would find a new doctor asap. I have allergies as well.
I go to Hopkins for treatment and live in south Florida.
I have also read medical textbooks and if there is a predominance of Hurthle cells, you need a surgeon right away. Any mention in your pathology report about colloidal cells?
If you need a referral I will try to get you some help.
My personal opinion is this, if interested, keep looking for someone else.

samanjan said:

loispol1
Too many questions?????????? You must be kidding. I would find a new doctor asap. I have allergies as well.
I go to Hopkins for treatment and live in south Florida.
I have also read medical textbooks and if there is a predominance of Hurthle cells, you need a surgeon right away. Any mention in your pathology report about colloidal cells?
If you need a referral I will try to get you some help.
My personal opinion is this, if interested, keep looking for someone else.

I do not know anywhere else where I can talk to someone who knows about all this. Please send me whatever information you might have please! Thank you for writing back to me! I just wrote another note with the answers to your other questions. I want to make sure that when they do the surgery they are careful with medications/anestetics and my allergist will do special testing for me before hand also. I also want to make sure the do the operation correctly, looking at everything. So far the surrounding areas of my thyroid have not been looked at with ultrasound, MRI or anything else.
Lois

samanjan said:

loispol1
First, let me say this, most hurthle cell, actually thyroid cancer, is found inadvertently. It is referred to as the accidental type cancer. Usually they are looking for something else. In my case I had a huge tumor,which I found.
It is aggressive, recurrent,and sneaky.
I cannot believe you have not had an ultrasound. That should have been the first thing, not FNA. YOU are your own best health advocate.
Are you able to travel for treatment in another state?
Write me at samanjan@bellsouth.net for numbers for the following:
referral-Dr. Dave Cooper, Johns Hopkins, Chief of Endocrinology - secretary, Chrissy
Surgeon - Chief of Endocrine surgery - Dr. Martha Zeiger. Her secretary is Catherine.
Elaine

Thank you
Perhaps my typing was a bit unclear. I actually had 1 neck (small portion) and 1 thyroid ultrasounds at the end of December 2009. These were ordered because I had found this new lump below my Adams apple which hurt and was causing swallowing problems problems,etc just before the holidays. My internist referred me to a surgeon. I actually went to an ENT doc and then a general surgeon who I know, and both said possibly it might involve removing the thyroid as it could be attached. The ENT surgeon could do the surgery, but because of my severe allergies and fear of complications as I am disabled and ill from other health conditions and have severe allergies, I decided to make appointments at MD Anderson & Moffitt. The only reason I did this was because I was trying to get in right away with one of them, and after the MD Anderson appointment I decided to get the Moffitt opinion as well, as I had already waited so long for that appointment. The Moffitt surgeon led me to believe that I might not have to have thyroid surgery and the lump could have been a lymph node in my neck, so I went and had a new ultrasound there (which reported different findings from the ultrasound report done only 1 month before done at my local hospital). Right after the new ultrasound at Moffitt, I then had an ultrasound FNA biopsy performed by a radiologist with pathologist in the room and also another doctor (it is a teaching facility) and assistant was present. They did three areas and two of those areas were not large in size but solid appearing, and one was the lump on my front of my neck, that was drained and then biopsied. They were not going to do the right or left nodules originally and had to get permission to do that also. I had a lot of lidocaine needles and 3-4 FNA specimens from each area. It was extensive but the radiologist wanted to be sure he had adequate specimens. My neck & throat are still very sore. I may actually have strep, and my doctor who I saw again yesterday gave me an RX now for antibiotic, Levequin (the only only I can take somewhat safely that I know of).

What I did not have was any further testing of my neck areas or lymph node areas in my neck which has been very sore all along and where the lump was actually located. I am not a good typist so I thought I would clarify. Okay the nodule that had a hurthle cell FNA finding, was actually still not very large 1.2-1.5 cm ? I think) and the surgeon over at Moffitt said normally they would not even biopsy it but usually watch it. Because I had the FNA biopsy and it showed Hurthle cells, the recommendation now is the surgery.

I spoke with a woman down here in Florida who refers patients to John Hopkins (she is listed at the John Hopkins website) and helps patients find the right doctor. She emailed me information and I guess her job is to set things up, forward test results etc. It was very nice of her to send me information right away and offer help.

I did want to hear back from you though as it seems you know from personal experience who would be the best doctors to see there. thank you so very much for responding back to me so quickly with your information. Thank you, thank you, thank you!

sfl67 said:

loispol1
I had my first follow-up Feb. 10, the ultrasound showed no new nodules or tumors and the surgeon said the surgery along with the radioiodine had done what he intended. I will have blood work soon, my TSH levels are too high, but hopefully they will come down with an increase in meds. I feel very blessed at this time, but like so many others I can't become too confident that it might not be back, since that is the history of the Hurthle Cell. My endo. was not familiar with this cancer, so my surgeon will handle my follow-up care completely. I am fine except for lack of energy and a cough I can't seem to shake. I have been told to give myself at least a year to feel normal again, so we'll see.

I sincerely hope you can find doctors that can handle your allergic concerns and give you the peace of mind needed to proceed with the procedures necessary. Good luck and let me know how your search goes.

Hi! Thanks for your message!
Hi thank you for yur message! I am just getting used to this web site, so I am so slow in responding. Sorry about that. I do not know much yet about how it is after the surgery. I did read that most docs try to keep the TSH suppressed to low or nearly detectable levels after the surgery & with hurthle cell dx. Mine have been at nearly detectable levels since '94 to suppress the large goiter and growing nodules, i have had all the way since back then. I do not have any side effects when my TSH is lower, actually it is the opposite. When it is not really low I have zero energy, and all the worse symptoms of hypothyroidism, however, I still have my multinodular thyroid and i have been diagnosed with Hastimotos thyroiditis, so there is that also. I have not felt very well since last may when my thyroid medication was reduced, but there have different problems with the medication since then so that could also be a reason, the type I take was reformulated and then in very short supply.

I really hope you get to feeling better really soon, it is hard to go day in and day out feeling zapped. Thank you so much for writng me, finding this support discussion area has been a blessing!
Smiles,
Lois

loispol1 said:

Mayo in Jacksonvile
I actually went to this Mayo (a satellite) years ago and was treated poorly when I was so very deathly ill. I have been to the main Mayo and there (at that time) was a huge difference in medical care. I had very good care in Rochester! i have thought about going back to the Jacksonville facility but have my reservations as this is a "satellite of the main Mayo in Rochester. I am almost afraid of having any surgery here in Florida as it can be a different world down here sometimes. I hope the other people you referred did well? I hope so!
Thanks for the info and kind response! I hope this note finds you feeling fairly well today! Where do you live and where did you have surgery and treatment?
Smiles,
Lois

Mayo in Jacksonville
Hi Lois,

I'm sorry, I used a poor choice of words in "referred". I have referred only to their web site in my search of knowledge about this disease, I have never referred anyone to their hospital. I have read that they are forerunners in treatment of this disease, but I don't know that, have only read it.

I think Samanjan seems to have a great deal of knowledge of this disease and she has dealt with it for a time from her posts. With Hurthle Cell, reoccurrence and metastasis are possible. My tumor was attached to my trachea and Hurthle Cell responds to the radioiodine less than 10% of the time I'm told, so diligence is key with this diagnosis.

I had my surgery and follow-up treatment in Charleston, WV at a hospital that is supposed to be a leader in cancer research and treatment in my area. My endo did not have a lot of experience with this thyroid cancer, so my surgeon has agreed to take my aftercare and I am grateful for that. I was first diagnosed with a goiter, and a fine needle aspiration was inconclusive as well, so I was told we could watch it for 6 months or err on the side of caution and have the surgery. My surgeon told me he would do pathology on the tumor during the surgery and if it appeared malignant, he would do a total thyroidectomy, so I had only the one surgery. My tumor was in the right lobe. I am still very sluggish and feel that I am in a fog most days, but I am praying for better days ahead.

I have a friend who has just returned home from Johns Hopkins after surgery for breast cancer and chemo therapy; she seems to be doing very well. I think I would feel as you do about a satellite connection for medical care; would not be my first choice if I had the ability to do something else.

I wish you well and please let me know your progress, you will be in my thoughts.

Shelia

loispol1 said:

Hi! Thanks for your message!
Hi thank you for yur message! I am just getting used to this web site, so I am so slow in responding. Sorry about that. I do not know much yet about how it is after the surgery. I did read that most docs try to keep the TSH suppressed to low or nearly detectable levels after the surgery & with hurthle cell dx. Mine have been at nearly detectable levels since '94 to suppress the large goiter and growing nodules, i have had all the way since back then. I do not have any side effects when my TSH is lower, actually it is the opposite. When it is not really low I have zero energy, and all the worse symptoms of hypothyroidism, however, I still have my multinodular thyroid and i have been diagnosed with Hastimotos thyroiditis, so there is that also. I have not felt very well since last may when my thyroid medication was reduced, but there have different problems with the medication since then so that could also be a reason, the type I take was reformulated and then in very short supply.

I really hope you get to feeling better really soon, it is hard to go day in and day out feeling zapped. Thank you so much for writng me, finding this support discussion area has been a blessing!
Smiles,
Lois

Lois
Elaine is such a Godsend,isn't she? She has been my guardian angel since I found this site. Thought I didn't get hooked up at Johns Hopkins with her doctor, she gave me Drs. names and told me to get in whatever it took. Luckily, my endocrinologist studied at JH, so he was able to get me a referral with the Dr. he trained with. I wish you the best. If anyone can help you JH will!!!

Hugs, Patti

Sisu61 said:

New to this
Lois,

I have been reading everyone's emails in this site and was recently diagnosed with Hurthle Cell thyroid cancer. Mine was 3.5 x 3.3 x 3.1 and took 3 hours to remove. They didn't find it was cancer until a week later and still have to go back in and now take the right side out in April. My TSH was 4.53 before surgery and 5.65 a couple weeks after so they started me on thyroid meds until the next surgery. I have been feeling really run down but have gotten some energy back. Lately have been feeling anxious and "snappy" at times. They also thought my thyroid was Hastimotos thyroiditis after they removed the left side. Still in the early stages of everything, needing the other surgery and then 3 weeks of the low iodine diet prior to RAI in June. I am concerned about my energy then and figuring out what I can eat. I work as a RN and work 12 hour shifts, of course hard to do without any energy.

I hope things get better for you and you are right that this support discussion is very helpful. I have learned alot just from reading everyone's responses but still feel I don't know alot about this cancer. My endocrinologist researched Hurthle cell cancers when she worked at Mayo but said it was hard finding out any information since there were
not many cases out there.

Hope that energy returns soon.

Karleen

Thyrogen
You might ask you endocrinologist or nuclear medicine physician about taking shots of thyrogen instead of not taking your thyroid replacement harmone prior to your RAI treatment. It eliminates the perioed of hypothyroidism which apparently is very difficult to deal with for many people. I had the choice of one of the other and after talking to my endocrinologist and my head and neck cancer surgeon(a well regarded expert on thyroid cancer at U Cal San Francisco), I chose to take the Thyrogen. I had one shot on Monday, another on Tue, had the dose of Radioactive Iodine on Wed. and a whole body scan on the following Wed. I was fortunate in that it appears that the RAI was taken up by the Hurthle Cell cancer since this happens in only about 20% of cases of Hurthle Cell Cancer. I had what appeared to be a metastisis in a lymph node below my left breast bone and some uptake in my thyroid bed which was likely residual thyroid tissue. I will have another whole body scan in June and a PET scan in June to see if there is any indication of cancer. I also had a TSH test the week of the RAI and another in January. The January level was near zero which was great. I will have another TSH blood test in May and see my endocrinologist. I will see my surgeon in July--she did a sonogram on my neck in January for a baseline and will do another in July--again to look for any signs of remaining cancer. I think I will continue to have follow up test every 6 months for a couple of years then perhaps go to once a year--basically to look for a recurrance which happens in 34% of the cases.

The low iodine diet which I had for 6 weeks prior to the RAI was limiting but not too terrible--the diet on the Thyroid Cancer's Survivors website is straight forward and reasonably easy to follow.

Hope my experiences are helpful to you. Doctors are different and the details can vary but I think the pattern treatment is the same.

BellsAngel69 said:

Lois
Elaine is such a Godsend,isn't she? She has been my guardian angel since I found this site. Thought I didn't get hooked up at Johns Hopkins with her doctor, she gave me Drs. names and told me to get in whatever it took. Luckily, my endocrinologist studied at JH, so he was able to get me a referral with the Dr. he trained with. I wish you the best. If anyone can help you JH will!!!

Hugs, Patti

Hi Patti!
Yes, she is great and I actually was so stressed out I didn't remember her name! I thought of going to John Hopkins and I may still in the future. I went back to MD Anderson in Orlando and after my bad experience over in Tampa recently, and with my total exhaustion and also being single and alone, I decided to go with the surgeon in Orlando. He apparently is gifted and was very kind and concerned yesterday and brought his staff in to meet me and reassure me they would be taking every precaution with my allergies. I also spoke with someone who had surgery with him recently, they had nothing but praise. The Orlando MD Anderson Cancer center works with the University of Texas MD Anderson Cancer Center with conference calling and treatment recommendations. Apparently every case goes through this. If they can't be treated with something in Orland, then a patient is sent down to the Texas facility. Anyway I am not well enough to travel by myself right now for surgery and with everything considered, I feel this surgeon (ear, nose and throat) is very knowledgeable and will be very careful. He does a lot of thyroid surgeries. He is actually very concerned with the lump on the isthmus (shows on my neck) although that area came back benign in the FNA. Today he is having more ultrasounds done of my thyroid again and neck and possible neck lymph node biopsy if indicated. I feel good that he is doing this. I will have another app't with him and then all the testing and anesthesiologist about a week before and I hope to have anesthesia testing done by my allergist in the meantime. This facility is latex free which is a blessing for me, as allergic as I am.

Sounds crazy but I am more afraid of the operation-that is the anesthesia and my allergies than anything else. Are you going to JH soon? It seems that is the best place or one of the best places to go with Hurthle cell. Please keep me posted!

Take care & smiles, thanks for the message!
Lois

loispol1 said:

Hi Kathleen
I am so grateful to have found this website and information about Hurthle cell cancer. I have spent over a week straight researching the subject and information is very sparse. I occasionally find helpful information only to find that some it contradicts the information I have been trying to find, which is, exactly what percentage of FNA Hurthle cell neoplasms turn out to be Hurthle cell carcinoma. I have read all different percentages. This would have been helpful information in making my decisions for surgery. The surgeon I am seeing said only 15 % but I have read recent it is higher, more like 30%. And then there are all the factors built into that.
There is some good info. out there and I especially like what was written at emedicne and even the mayo website gives some basic helpful info. I ran out of ink again in my printer so I think my researching has come to an end. I went back to MDAnderson in Orlando yesterday and have made the date for my thyroid operation. Because of all my thyroid issues, supposed Hasimotos DX, my age which is 59 and all the nodules over 7, plus my medical condition - we decided to take the whole thyroid out the first time...which is what all the doctors i saw suggested. i have been on high dose thyroid medication since 1993 or so and my thyroid probably does not function on its own. I have severe allergies and when they treated me with compassion, kindness and offering precautions concerning the allergies I decided to hand the whole thing over to the experts there. I had thought of traveling to John Hopkins or elsewhere but i am just not well enough to do so. Although i am on thyroid medication I have little energy and do not feel well, i do have other medical problems. Anyway i hope i have made the right decision. I only had my thyroid FNA come back with the dx of Hurthe cell neoplasm. Today the surgeon is having me have another ultrasound of my thyroid and then my neck and possible FNA of neck lymph nodes if anything looks suspicious. I am truly afraid of surgery given my history of severe reactions to medications and breathing problems etc. I am going to have to get through this somehow. Part of me just wants the whole thing to go away; I keep thinking there is a percentage/chance, that I do not have cancer yet. I now this is a serious matter and I cannot afford to put off the surgery any longer. I am also allergic to iodine so there is that also which could be a problem later on.

Anyway, everyone here has been super nice and helpful. They are all very courageous, by comparison I am truly lacking in that area currently. i am so sorry you are having to deal with this and also working so much. Did you take time off after your surgery, is it possible for you to take a medical leave until you are back on your feet, or maybe work less hours? Of course I don't know your situation, but I would think that now is a time you would not want to get run down. Thank you so much for your very kind and helpful note. I hope today was a little bit better for you than yesterday.

Smiles,
Lois

Hi Lois
Lois,

Just got back from hematology and found my hemoglobin is back up to 10.9. It had dropped to 9 after taking out the left side of my thyroid. I will have my right side removed on April 16th. My biopsy also came back as a Hurthle cell neoplasm. The pathology took a week, as Hurthle cells are hard for the lab, and then it came back as Hurthle cell cancer. Since it was past the week of the original surgery they had to wait 2 months to take the rest out. I can understand it because my throat was so swollen, couldn't eat anything but liquids for a week after the first surgery and still felt like it was hard to breath at times.

I am looking into leave of absence after the next surgery and around the time of the RAI. Unfortunately I have to work. I get child support for my kids but one will be done in another year and the other one is a sophomore. He left me alot of debt and still trying to climb out of the hole. Plus he rarely sees the kids. The costs of all this are not helping. My first hospital bill was over 27k and I have to pay $1,900. I was a stay at home mom once the kids were born and had to go back to work after the divorce. Being a nurse helps where you don't have to work 40 hours a week but the 12 hour shifts are killers. I have talked to my boss about going down to 8 hours after surgery and she was open to that. It helps having a great and understanding boss. I have only worked at the hospital for 10 years but love it there. I really can have apathy for my patients now when they feel short of breath etc.

Will all your allergies and health issues, that has to be scary. Especially when you were talking about the breathing issue and it is going to get swollen around your windpipe when removing the thyroid. I am only 48, going to be 49 this summer, and have never had health issues besides arthritis in the knees and now tennis elbow from lifting patients. Things have to get better! It is shocking when you hear the word cancer and it is hard to fight when you feel tired and weak. I have seen many fighters in the hospital I work in and they help push me on. We do alot of bone marrow transplants and those people are something. To be able to put them through what they have to go through and being stuck in that hospital room for months sometimes. I couldn't do that, but then I guess you can do anything when you need to.

What was that song years ago, "No Worries, Be Happy Now".

Karleen