Hurthle Cell Carcinoma

Hurthle Cell Cancer
I was just diagnosed with Hurthle cell cancer. I am looking for information as I have already had my entire thyroid removed but am getting ready to start the diet, shots and radiation. Any advice...? Especially on the diet side?

chrissygirl11 said:

Hurthle Cell Cancer
I was just diagnosed with Hurthle cell cancer. I am looking for information as I have already had my entire thyroid removed but am getting ready to start the diet, shots and radiation. Any advice...? Especially on the diet side?

Hi and welcome!
Tell me a little about when you were diagnosed, your surgery dates, and when you start the diet??? I was diagnosed ono March 10'th. Had half of my Thyroid out March 4'th and March 12'th. Starting to go off my meds on Monday. Test shot starts the 26'th. I too was diagnosed with Hurthle Cell Cancer. I got information on the diet from the Thyroid Cancer Survivor's website....they even have a cookbook on it.

weberdns said:

Hi and welcome!
Tell me a little about when you were diagnosed, your surgery dates, and when you start the diet??? I was diagnosed ono March 10'th. Had half of my Thyroid out March 4'th and March 12'th. Starting to go off my meds on Monday. Test shot starts the 26'th. I too was diagnosed with Hurthle Cell Cancer. I got information on the diet from the Thyroid Cancer Survivor's website....they even have a cookbook on it.

Hurthle Info/Help Please-from Lois
I had an FNA of Hurthle cell neoplasm confirmed by two different pathologists/places viewing the same slides. I can't have my TT surgery now, it was postponed, because I am having some other possibly serious problems, possible blood clot in my portal vein and abnormal blood tests. I am trying to have a CT scan or MRA but allergies to contrast and abnormal blood tests are holding this up. FNA said "cellular specimen with prominent hurthle cell features, consistent with Hurthle cell neoplasm" the second said "suspicious for follicular neoplasm with hurthle cell features", and "our diagnosis is in exact agreement with that rendered at.. (other place)".I think this means I have a Hurthle cell adenoma or hurthle cell carcinoma? Could I have my thyroid out and it would not be cancer? Do Hurthle cell adenomas turn malignant in time? I wrote about my dilemma in a separate area here but had no responses. I definitely feel alone in this. Before I thought I would just be dealing with severe allergies going into surgery, but now this!Do I really need surgery? The FNA nodule found with Hurthle cell was small .7 cm. Later ultrasound, after the FNA, said the largest nodule in that area was 1.4mm? Did it shrink? Did they miss it? It said the other nodules all had irregular margins/borders but were under 1 cm? Two other areas were tested during the FNA and showed benign lesions. I have Hasimotos also. Anyone have any ideas/information concerning my questions above? If it is a small area, and malignant, would it be less likely to be spreading?

samanjan said:

loispol1
My FNA was the same as yours and was Hurthle cell carcinoma. I would run to the first surgeon and get the thyroid completely removed if I were you. This is a quick growing, aggressive type of recurrent thyroid cancer. Why the wait?
I know you have issues but HCC is a killer when left untreated.
Elaine

Hi Elaine
I had surgery scheduled for this past Friday and although I was about as nervous as a person could be due to fear of the anesthesia only, not the surgery, I got sick as a dog for about 5 days, had elevated white & red blood counts, abnoral bun, creatine bun/creatine ratios, some other abnormal tests and had severe abdominal pain and diarrhea. I lost about 5 pounds in two days. Also had/have chest pain. My GP sent me for ultrasound and it said I might have a blood clot in the portal vein by liver. Since the operation was postponed until I am well enough to have it, I saw the allergist who said he would do the anesthesia testing, so I would have less chance of an allergic reaction. I drove all the way to Westin. He changed his mind and now doesn't want to do it. Now I am trying to figure out how to either have a contrast CT scan (bad for RAI treatment & i have sever allergy to this contrast) or MRA scan with contrast which I could have a bad reaction to and my kidney function blood tests are good enough to have it. In the mean time I have reduced my thyroid medication, for some reason I seem to have become hyperthryoid (felt like) following the FNA. Anyway, at least my pulse and blood pressure are normal range now. I can't seem to get to the operation part. I am working hard at getting there though. Part of my confusion is that followup ultrasound said that the largerst nodule in the right lobe (where .7 cm hurthle cell was on FNA) is now 1.4 mm? It seems it shrunk, could it be going away? And then there are the variances of percentages 15-65% of hurthle cell malignancy? My doctor says 15% but the new ATA guidelines say it is more like 20%? Yeah, the allergy thing has totally freaked me out. And then there is the size of the tumor also, mine is small....I have read all kinds of things about the size, but that seems to be of less importance now. My neighbor told me today I am not sick enough to have cancer, I would be more ill. Crazy huh? After someone has gone through enough serious allergic reactions like me, they tend not to trust the medical profession, which has a bad habit of undermining the danger and after-effects/trauma of having survived these experiences. But I am still working towards the rescheduling, just as soon as I am well, and hoping to have a little more info/reassurance in the allergy department. I have my cardiologist appointment and then neurologist app't Wednesday so I hope they can encourage me also. My herniated disc problem is very bad right where the thyroid is. I hope the surgery doesn't mess that up...I need that surgery too! Would be great to know I can safely have anesthesia for that also.If I didn't have this crazy allergy history (think of putting your hand on the fire over and over again and then going back for more) I would have been past the surgery already. I have had some nasty comments from health care professionals recently; it makes me want to just forget about all this. Hey at least I am still alive, who knows what will happen to me in surgery... I am that allergic to medications. Faulty thinking? Maybe. Sorry to be rambling & grumbling along here, I am totally exhausted & frustrated. There seems to be an advantage to knowing in advance, what was going on. Thanks for the message, it helped. I hope you are doing very well?

loispol1 said:

Hurthle Info/Help Please-from Lois
I had an FNA of Hurthle cell neoplasm confirmed by two different pathologists/places viewing the same slides. I can't have my TT surgery now, it was postponed, because I am having some other possibly serious problems, possible blood clot in my portal vein and abnormal blood tests. I am trying to have a CT scan or MRA but allergies to contrast and abnormal blood tests are holding this up. FNA said "cellular specimen with prominent hurthle cell features, consistent with Hurthle cell neoplasm" the second said "suspicious for follicular neoplasm with hurthle cell features", and "our diagnosis is in exact agreement with that rendered at.. (other place)".I think this means I have a Hurthle cell adenoma or hurthle cell carcinoma? Could I have my thyroid out and it would not be cancer? Do Hurthle cell adenomas turn malignant in time? I wrote about my dilemma in a separate area here but had no responses. I definitely feel alone in this. Before I thought I would just be dealing with severe allergies going into surgery, but now this!Do I really need surgery? The FNA nodule found with Hurthle cell was small .7 cm. Later ultrasound, after the FNA, said the largest nodule in that area was 1.4mm? Did it shrink? Did they miss it? It said the other nodules all had irregular margins/borders but were under 1 cm? Two other areas were tested during the FNA and showed benign lesions. I have Hasimotos also. Anyone have any ideas/information concerning my questions above? If it is a small area, and malignant, would it be less likely to be spreading?

Sorry that this is happening to you!
Hurthle cell adenoma vs. carcinoma cannot be determined until it is removed and totally dissected and tested. I had a HC Neoplasm that ended up as a carcinoma. Many more of them are adenomas. Take care of your other problems but ask when you can have the surgery to have it removed. There is a theory that adenomas become carcinoma over time, but this has never been proven. As far as the size it could be a measurement problem, and the angle that they were measuring from. In my case the ultrasound showed a 2.5 cm lesion, when I had the biopsy it showed a 2.1 cm lesion, and when it was removed it was a 1.5 cm lesion. Many of these lesions are cystic in nature so they can be hard to measure. Good luck to you and let us know what happens!

loispol1 said:

Thanks a lot for your kind message!
I really appreciated your taking the time to write some things out for me, along with Elaine's message, it has really helped. I read the same thing about adenomas possibly turning into malignancies but no proof of that. Along my journey with this I have experienced a few truly awful behaviors by a few medical providers. Luckily I have a lot of other great medical providers that have provided me with excellent care and treatment, so I am shaking off the discouragement. I am having an MRA to rule out the clot next week, and will have to wait for the result before the surgery. I am still looking into skin testing for anesthesia if I can arrange that. If not, I will schedule my surgery without it. When I had my FNA they used alcohol instead of the regular bedidine (sp?), or something else as a transducing liquid. Some of the ethanol entered the needle and was injected into my nodules with each pass along with the lidocaine injections. It was very painful afterwards for at least a month. I wonder if this provided some sort of ablation of the biopsied nodules? To go from .7cm to 1.4mm seems to be a big reduction. I also read that nodules frequently go through a necrosis after FNA, but of course ultrasound dimensions cannot truly be compared. All my thoughts on everything are just to ease my mind that I haven't had the surgery yet. All my doctors have said I need the whole thing out, especially since I have Hasimotos. I think I had a recent hyperthyroid experience which was causing some problems for me. I reduced my thyroid medication a little and now blood pressure, pulse, chest pain are less/lower. Since I saw my cardiologist & neurologist yesterday, I have reassurance that once the MRA is done, and results are clear, I am okay for surgery. My neurologist told me what to tell the surgeon and anesthesiologist about my C5-6 severely herniated disc/touching the spinal cord - to be extra gentle, no sudden movements, not to hyperextend the neck too much, & extra care with intubation. Even if this hurthle cell tumor is not malignant now, I am tired of the occasional hyper episodes and feeling "thyroid yucky" most of the time. I have over 8 nodules throughout the thyroid, since 1993, which have not been really followed closely until now, with the appearance of the new visual "isthmus" lump. It makes complete sense to have the surgery, and I am dealing with the fear of an allergic reaction as best as I know how. Anyway, I am on my way forwards, it is just taking me some extra time, unfortunately.
Thank you for caring enough to write me. It has help so much just to know I am not completely alone in this! This seems to be the only place that discusses Hurthle cell in detail. I hope you are doing well? Where are you now in your experience with this?

You are never alone!!
I am still on the LID and 8 days without Thyroid medication! I am feeling pretty good still, and trying to carry on my normal lifetime activities. I have been amazed at the support of my friends and family and the offers that are pouring in to help and bring meals for my family while I am in isolation. One came from a good friend that I haven't seen in years, but send Christmas cards to every year! Some days are good for the famuly, and some days are awful but we are taking them one day at a time!

Yesterday I had an appointment with my PCP who started this whole merry go round ride. All because he noticed that I didn't look "quite symetrical" and slightly swollen on the left side and got that ultrasound. I thanked him for being such a good doctor and saving /extending my life! He later reviewed my chart and called me back to make sure that I had follow-up appointments with the endo as well as a script for the synthroid, bloodwork, etc. RI starts in 11 days! Making my list of things I still need to get and do before the time. It sounds as though you have a plan for finding out what you are dealing with and I'm sending success prayers your way as I type this!! Have a great day today!
Sue

loispol1 said:

Hi Sue
Thank for telling me about what is going on with you right now. I am amazed that you are feeling so well without any thyroid medication, that's great! I guess you are not doing the thyrogen shots I read about? Yes, you are so lucky to have a very good PCP! I have a very good internist who saw me right away when I discoverd my new lump and that began this long journey for me. I finally received the first cancer centers surgeons notes, he finally signed them. It would have been helpful to have had them sooner, it is wrong that he wouldn't sign them until I wrote a letter and sent it certified mail complaining I needed them for my decision making (I made over 4 offical written requests).It looks like you are over on the other thyca website also? Is that correct? I reduced my thyroid med as I was feeling hyper and having chest pain and irregular heartbeats. Now I realize it could have been the hasimotos acting up, not a cause of the medicine. You are so lucky to have friends and family to help out. I am severely lacking in that department, it has to do with being chronically ill and having moved away from my majority of friends four years ago, also I have been very anti-social this past year, just feeling so very tired and exhausted. My plan is sketchy but I did call the surgeon's office yesterday a to tell them I what I have planned, the MRA - they said just to call when I am ready. Getting ready/preparation is a lot of work isn't it? Where will you be in isolation? How long? I really hope this goes well for you! I am sending prayers for you also! Thank you so very much for your support, it means a lot! Lois

Lois
Yep I am at the other site as well. I will be isolated in my bathroom that has an attached bathroom to it. I will be isolated 9 out of 10 days....2 for the test shot and 7 for the full shot. If they add any more time I will scream. I'm making a list of everything that I need to do including us moving hubby's clothes to my son's room...he is in college, bringing things that I will need to the bedroom, making lists of stuff I have to get. I just got an e-mail from a friend of a friend who I have never met who has offered to cook me a meal......cards coming in from all over the place....the support is AMAZING for me to see! Just a suggestion....call some friends, send them an e-mail, etc. You may be amazed at how many people will offer to help you out! Sorry that you have to jump through hoops to get records and notes. I am experiencing the same thing....I ask for things as I am at the doctor's office, so that I have them. When I went to my endo report they still had not received the path report...so I let them copy mine! So glad that I have people here to provide support!! It really does help! We are all in this together!

loispol1 said:

9 out of ten days! Yikes!
Will you go crazy hibernating in there? Wow, that is a long time to be holed up in the bedroom! Is that a normal time of isolation? I hope you have interesting things to do while isolated. What will you do? Can you have a computer, a tv of course, & movies? Books? How will you get your food? Will it be left at the door or will you have your own mini fridge and hot plate? I have memory problems and with the usual constant interuptions at doctors offices (not the god ones), I forget to ask for the copies. I actually go to the hospital records department and get my own records, like you I have them but the doctor sometimes does not! I'm so glad you have so much support. I have found that my neighbors seem to be my best support. People who I thought would care, have acted like they don't know me now! Well, maybe after I have a definite diagnosis some people might care. I feel like I am in limbo. Can't move forward until I know I am okay for the surgery. I am feeling a lot better than last week! I have had this problem for such a long time - since 1993. They didn't seem that concerned back then about nodules and cancer. I am on a really high dose of thyroid medication, so it has kept everything suppressed. I do not feel well, and have not felt well as far back as I can remember. There is a possiblity I will feel better without the thyroid & hasimotos thing going on? If I had not gotten sick last week, I would be past the surgery and probably have the final pathology results now. It has been really hard waiting! I am glad there are support websites, otherwise I don't know how I could possibly deal with any of this. The information here is very helpful!Thanks for for your current update! The RAI routine is actually very interesting and unusual, despite the fact it has to do with cancer and is a real inconvience. I never knew people had to go through something so crazy like this before! Well, I am praying that everything goes very well for you and you actually have a mini vacation of sorts in your bedroom! Lois

Yep...almost all the conveniences of home
My daughter is lobbying for a mini frig that can go in her room after I am finished with it, but I don't think that is going to happen. I have a TV, portable DVD player, computer (desktop which I turned into wireless.....in case anyone else has a desktop that they need to make wireless I can tell them how), I'm getting books from the library, watching DVD's that I bought and never watched.....you know with work and 2 teens there is never enough time. I also have phones all over the house that have an intercom so if I need anything I just page someone to bring it to me if there is anyone at home....

As for the food.....I can go downstairs when nobody is home, so I'll cook my own breakfast and lunch....cook dinner at lunch and put it in the frig.....at dinner time they will warm it up for me, and leave it at the doorway......the big joke in our house is how they will have to run down the stairs and I will have to run to the door to beat the dog will DEFINITELY want my dinner!!

So far not bad with they hypo symptoms. No meds for 11 days now, and on LID for 11 days!! Getting a bit tired by night but still able to do my work. Have had a hormonal migraine.....mild one though for the past 3 days off and on......

Hopefully you will be out of your limboo soon and have a diagnosis and you can move foreward. Will keep you in my prayers that this happens soon. Make sure to let people know what you need and don't be afraid to ask! Next event....bloodwork on the 21'st to see what my levels are!

loispol1 said:

Hey, thank for all the details!
So you really have worked things out! What about the walls, will the radioactivity pass through the walls and affect anyone else? Funny about the dog wanting your dinner! So if you move around the house is safe, i mean there is no radiation lingering after you have left? If I need this treatment it should be very easy for me as I live alone in my house, except for my chihuahua, guess she would have to visit the neighbors!How long wil tis go on for exactly? Well hope the diet has worked our and your levels are where they should be. Did you consider the thyrogen?

Well am still having chest pain, but no irregular heart beats. I forgot to take my thyroid medicine for several evenings...I take natural thyroid, Nature-throid medication and it works better if it is divided during the day. I have been falling asleep on the couch and when I wake up it is morning. I am a little tired, I feel like I am moving in very slow motion compared to the rest of you. I have been telling myself maybe I do not have a malignancy as I have had this for so very long, then again I remind myself this is serious and I haven't felt right for the past year. Regardless, with all the nodules-over 8, hasimotos and a new visable lump with pressure swallowing, I think it is time to have the surgery. Hopefully that will be not too far away. Thanks for the message & all the info.!!!You sound very upbeat and that helps me feel better also! Lois

Hi Lois!!
We are still working out the details but are getting stuff ready and a list of things that we need to do! Radiation does go through walls as well, but my bed is more than 6 feet away from the wall near where anyone would go, and I am setting up things along that wall as well.

When I walk around the house, they say that the radiation is minimal, but I will be wearing gloves to keep the radioactive sweat from getting on anything that I touch. Maybe an overkill, but the tech said that it would be fine.

I will be in isolation 2 days for the test shot, and then out for 24 hours. Not sure if there will be any restrictions at that time or not. Then I will be in isolation for 7 days after the full dose.

My doctor did not consider Thyrogen for this ablation as she feels that the Hurthle cells will be more accepting of the iodine with LID and going hypo. I really don't feel too bad being hypo at all! Just tired....now not very hungry, and putting on weight with salads and the LID. This morning woke up with a bit of horseness, headache, and nausea, which the surgeon says means that I am going hypo just fine. I am still tired and when on my feet too long my back starts to ache. Hands aren't moving as well today to type. I asked my surgeon about my needing new glasses and he said that could be because of the hypo or my age....and not to get checked for at lest 6 weeks after my treatment.

Don't spend time worrying about if you have a malignancy or not....that will be determined in the future. Put your energy towards correcting your health problems that you have right now! Some days are more positive than others....today is less positive, but I'm sure that something will happen to make the day a better one.....God does always provide that! Blessings, hugs, and continuing health for you! Make sure to put those meds where you remember to take them!!

loispol1 said:

Hey, you must be very hypo now!
I can tell you are hypo by your recent posts. I get hypo very fast when I forget my medication. In about 5 days of forgetting to take my medicine I can't get out of bed and I am depressed and everything else you have talked about. I saw your other post here about the endo. not being very optimistic. Let me tell you from over 20 years of being chronically ill with other health problems, doctors do not know everything! So, I want you to take on your own advice and not spend time worrying, you have good and bad days like me, but God is especially looking out for you and your family, I just know it! Otherwise, how could you have been so upbeat about everything you have been going through lately? There are people here with so much positivity and so many problems, who have been through so much. I keep asking myself, how do they do it? And always remember, you are that strong too & you can always seek out a different & more optimistic opinions at any time you choose, even if you just need it for some reassurance. I think you are doing great with all of this! And your writing here has really helped me want to get my surgery done and overwith! Thank you for your lovely posts & strength! Smiles, Lois

Thank you so much Lois!
I think that it was all the stress.....dog getting sick, daughter spraining her ankle, hubby stressed at work. I wasn't sleeping all that well. One night with a sleeping pill.....and the next day I felt back to my old optomistic self. I'm still feeling good and think that I have finished the preperations for the radioactive iodine tomorrow. I'm upbeat and positive once again, and my hubby and I have spent the day finishing the preperations, talking, and just enjoying each other's company! We've even talked so much about things we want to change about our relationship after the treatment is over to make things even better.....we've been married for 24 years as of May 3rd. I'll be in isolation during my aniversary, but will celebrate afterwards! Thank you for your posts and your encouragement. I had to remember that everyone has bad days and good days, and that 1 bad day does not mean that tomorrow won't be better and brighter! Wish me luck tomorrow!