What is Hurthe Cell Change...anyone?

[okisensei]

In May, my doctor found several nodules on both lobes of my thyroid on an ultrasound.  I had FNA performedon the pargest two nodules and my FNA biopsy samples were sent to John's Hopkins for a second opinion.  They came back with the comment "atypia...represents Hurthe Cell change-predominant nature of specimen raises possibility of a neoplasm."  My ENT originally told me I could have follow-up ultrasounds performed every 3 months to check rate of growth, but since the John's Hopkins report, he has been pressuring me to have surgery as soon as possible.  

I have found very little about hurthle cell online and nothing that I really understand...anyone out there able to explain what it is and why such a rush for surgery all of a sudden?  All my labs are normal.  Would waiting until summer for surgery (while also having 3-month interval ultrasounds) be such a bad thing?  I live in Okinawa, Japan but will have to go to US for surgery and summer is best time for me to travel since I am off work for 9 weeks then.

Any/all information would be greatly appreciated!  Thanks!

[okisensei]

WOW!  I'll check it out right now.  Hard to believe it would go away by itself like that, but its nice to know miracles still happen.  It does make you wonder if all the steroids and other junk we feed to animals isn't effecting us when we eat meat.  Here, they have something called the Okinawan Diet and they swear most people live to be over 100 when they stick to it.  It basically consists of mostly rice and vegetables with fish for protein.  I'mnot big on fish, but I may need to change if it means a longer, healthier life.

Thanks for the info...best to you!

Jackie

[okisensei]

It seems like the more I read, the more common your experience is.  So many people seem to go through years of problems with doctors saying it's all in their minds before finally finding that the thyroid is indeed the problem and needs to be removed.  Didn't it upset you to have doctors tell you there is nothing wrong with you when you knew there was?

My first ultrasound was the result of me not feeling well and all my symptoms at the time matched cervical cancer so my doctor (here in Okinawa) ordered tons of tests for that.  However, she also suggested I have my thyroid tested while we were at it since my mom had thyroid cancer years ago.  Even though all my labs looked normal, she still ordered the ultrasund which showed all the nodules.  By that time, I was on my way to the US for summer vacation so I scheduled the biopsies with an ENT there (FL).  When I went for the consult before the biopsies, the doctor told me I look good, he doesn't feel anything upon exam, and it is probably all nothing.  When the first biopsy results came back with the diagnosis of follicular neoplasm, the ENT told me not to worry and I can just be monitored every 3-6 months for now.  Then, when the 2nd opinion came back from Johns Hopkins with the Hurthle cell findings, the ENT changed his tune and wanted me to have surgery immediately.  Unfortunately, by then I was back at work in Okinawa and it isn't so easy to just hop back on a plane to the US.  My ENT agreed that I could have a 3-month ultrasound follow-up with the understanding that any growth at all would mean I need to make arrangements to come back for the surgery right away.  I am pleased that the follow-up ultrasound shows no growth and hope that continues so I can put off surgery until summer.  You may be right about the biopsies taking away enough fluid to reduce their size.  To me, that also means that the cells are not replicating at a fast enough rate to cause increased growth in a short period of time.  According to everything I have read, that probably means my tumor will be found to be benign when it is finally removed (fingers crossed for that one!).

Best of luck to you...hopefully your meds will be leveled so you will feel good soon.  Thanks again for your support!

Jackie

[malawi]

just an interesting fyi go to brantleycure.com and click on the abc video and you can  watch a video about a man who had a huge cancerous tumor on his thyroid and changed his diet to friut,vegetables grains and seeds and in 9 months his tumor is gone..his endo is freaked......best of luck to you..if your nodules are getting smaller thats a good thing!!.
Roman

[scarlet37]

  The first biopsy I had revealed normal cells- they though it was more cystic than anything. When I had a repeat ultrasound 6 mos. later the size of the largest one did in fact shrink. Weather it was due to synthroid therapy reducing the stress of my thyroid or the removal of the fluid in the nodules we'll never know. I was monitored every 6 months for 3 yrs. then I let a few years lapse before I sought more treatment.

   I became ill in 2006 and I knew it was my thyroid but surgeon said i needed medical treatment ASAP so sent me to a new primary MD.( my primary MD had passed away). New primary did lab after lab , test after test, neuro, gyno, you name it i wwent- FINALLY found it was thyroid due to my persistance and demanding of tests to some idiot endo who said you have anxiety and fibro myalgia!~ I would not accept that and demanded the tests- got the tests and went to a real endo!!  That is how my thyroid became full frontal.
             Anyway I just wanted to let you know the how and why of my treatment before finding the YUKKY cells.

       Maybe by taking the biopsy of your nodules you removed some of the fluid building up in them therefore reducing the size of the nodule? As far as the overall size your thyroid could be reacting tto the biopsy needle invading it's space and inflammation is the bodies initial reaction to fight.

         I wish you the best of luck with your thyroid venture and hope to hear of your progress when the time comes.

       Teresa

[okisensei]

Hi!  Well, I got my ultrasound results back and it appears that my nodules have possibly decreased somewhat in size.  I'm not positive as there is a discrepancy in the reading.  The report states my thyroid is stable with possible decrease in nodule size, but also shows the left gland measuring 1.1cm larger than in June.  (I had the films read by two different radiologists and they both agree with the report.)  Have either of you ever heard of nodules getting smaller without treatment?  Is it possible?  I have decided, based on the results, that I can afford to put off surgery for now.  I'll have another ultrasound in 3 months and go from there.  At the rate things are going, maybe the nodules will just go away by themselves (I've never heard of that happening, but maybe it's possible?).  Seriously, I know I will eventually need surgery, but as long as the nodules are not growing, I think I can afford to wait until summer when I am off work to go to the US for surgery.

Thanks for your support!  Best of health and happiness to you both!

Jackie

[malawi]

It was a short time between my surgery and RAI.Most areas wait about 4 weeks but everywhere seems to have a different protocol.Maybe they were trying to get me out before New Years but my nuc doc said all they look for is if your TSH was over 35 and mine was 45.2 at the time so i got the RAI.He also said that RAI is not as effective for hurthle cells as well...only 10 to 50 percent of the time.I was fortunate though that mine was a stage 1 and pretty much encapsulated.The surgeon did not even think it was cancerous by looking at it so the pathology report surprised me.Its a must to stay agressive and positive.It does seems like guys have an easier time getting adjusted to meds prob due to less complicated systems but it can take anywhere from 3 months to a year..one other thing to add was that my surgeon said there was no rush to do the surgery even with the possible cancer diagnosis....a couple of months would have made no difference but i chose to do it sooner rather than later...
To Good Health!
Roman

[okisensei]

It sounds like your surgery was just in time and your treatments have gone smoothly.  I noticed only a few weeks passed between your surgery and RAI treatment.  I wondered how soon after surgery they could do it.  You had a pretty high dose of RAI for a total thyroidectomy, but maybe that is because of the hurthle cell findings and your doctor wanted to be safe.  From everything I have read, RAI is not as effective against hurthle cells as with other forms of thyroid cancer, but they still recommend it.  It must feel great to know your WBS came back clear and your follow-up scan was good as well!  I wonder if being a man has helped you to find a good meds dosage more quickly...you sound like you haven't felt the highs and lows I read so much about.  Your positive attitude is a real boost for me!  I congratulate you on your cancer free status and hope you continue to feel good and live well!!  I hope I can maintain as positive an attitude as you appear to have and plan to work on imrpoving my diet and exercise routine now to give my recovery a head start.
Thanks again!
Jackie

[okisensei]

I didn't realize so much time had passed for you from when you first identified thyroid nodules to when they found the hurthle cells.  When you say you were monitored for a few years, how do you mean (lab tests, ultrasounds, etc.)?   Did the nodules remain stable for a while before the big growth in the large one?  When was your FNA?  It sounds like you recovered from the surgery itself pretty quickly but are going through the same struggles I have read so much about with finding the right dose of meds to allow you to feel right.  Besides the bloodwork, do you have any other form of follow-up (scans, ultrasounds, etc)?  

I appreciate you sharing so much with me.  I feel like everything is so sudden (my first ultrasound was in May and I never knew I had problems before then) and I don't have enough time to really study my options.  I know that if I lived in the US I would have probably had the surgery by now, but living over here brings so many challenges and I hate to rush into returning to the US if it is safe for me to wait a little while.  I don't feel sick so it's hard to believe there could possibly be something seriously wrong with me...do you know what I mean?  I also worry that I may be giving up my "good health" when I let them remove my thyroid because I will suddenly go through all the hypo/hyper issues that seem to result until proper meds levels are found.  I wish there was a way (other than surgery) to know for sure what's happening inside me!  I should find out the results of my ultrasound tomorrow (they weren't dictated yet today) and hopefully they'll show no change which I know will make me feel better about waiting so far.

I do hope they find the right meds dosage for you soon so that you feel better.  At least it sounds like the levoxyl is not causing the bad reactions you had from the synthroid.  Feel good and thanks again for sharing!

Jackie

[malawi]

Had TT on Dec 12th of 06 and RAI on Dec 27th.My first WBS(whole body scan )was on Jan 8th which came back all clear.I had 150 millicuries for my RAI.I wa started on 125 mcg of synthroid(based on weight(im 5'9 165lbs)and then to 137,162 and then 187 mcg which took about 5 to 6 months but i felt pretty good throughout the whole process.My FNA had come back as inconclusive(follicular adenoma).It came back as a stage 1 hurthle cell.Hurthle cells are derived from follicular cells thats why they are lumped into the same category.My 7 month scan on july 20th also came back all clear so now ill get checked out once a year.i took 2 weeks off work but only because i have a very physical job...everyones recovery time is a little different but most drs will say anywhere from 1 to 2 weeks.Anyway 9 months later i feel great and i am cancer free.I also radically changed my diet and workout regime which has helped tremendously....best of luck and feel free to fire away with any questions you may have.
Cheers
Roman

[scarlet37]

You'll never feel alone with this disease as long as this forum is up and running!!  We all share so much here because we all understand the process of thyroid disease. So please post away with your questions and concerns.

In my personal case I had one larger dominant nodule which had grown considerably since the last FNA ( i don't have the report in front of me & i don't recall the size) I also had several new nodules that appeared out of no where.My thyroid ws basically covered with nodules. I had been diagnosed with a multi nodular goiter back in 1998 ( brain fog prevents me from exact dates etc. without written notes in front of me). I was monitored for a few years- I even took synthroid as a measure to shrink everything however I got so sick from it I had to stop taking it. Had I gone to an endo to monitor the synthroid I may not have had the side effects I had.

I had my Total thyroidectomy in december 2006. I was off of work for 1 week. The suurgeon said since I do office work it was ok to go back. Looking back I think I should have taken a few more weeks off, but that is my opinion for me. Each person heals differently.

I am now 10 mos. post op and still trying to find the correct dose of levoxyl. I have been from extreme hypo to hyper in my levels. I have good days and bad. Throw in womanly hormones and yikes!!!

I have bloodwork drawn every six weeks now until we can find the proper dose. I see my endo every few months. It can be a long process to heal and totally recover depending on the person. Like I said above each person heals differently. Maybe you'll be one of the lucky ones if you must have a total thyroidectomy!

best wishes-

teresa

[okisensei]

Thanks Teresa and Roman for your postings.  I am so glad I found this forum!  I have felt pretty alone here since my diagnosis since I am in a pretty remote area and no one I have spoken to has been familiar with Hurthle cells.  I do wish I had known more about my diagnosis when I was in the US this summer. After my FNA in June, I was told I was safe just monitoring the nodules every three months since my labs are all normal and the nodules are small (all 1 cm or below).  However, after I got back home to Okinawa, the Johns Hopkins report (2nd path opinion) came back with the Hurthle cell findings and my doctor has been trying to get me back to the US for surgery ever since.  The more I read online, the more I feel like I should try to get it removed now instead of trying to wait.  I should find out the results of yesterday's ultrasound tomorrow and hopefully there will be little to no change from the one done in May.

Teresa- How large was your tumor?  Did you just have one lobe removed or did you undergo a total thyroidectomy?  I have read differing opinions on both procedures in relation to Hurthle cell findings.  Congrats on your benign diagnosis!  It must have felt great to hear those results!!!  What kind of follow-up will you now have?

Roman- I notice you waited some time from diagnosis to surgery.  Was it because they hadn't actually found the Hurthle cells at first, or because the tumor was small?  Do they feel the time made a difference in your final diagnosis?  Were they able to verify after surgery that it had not spread beyond your thyroid?  Did you undergo a total thyroidectomy?  Did you have the radioactive Iodine treatment?

How long did it take you both to recover from your surgeries (enough to feel able to go back to work)?  Roman, how quickly were they able to find the appropriate Synthroid dose for you?

I hope you both stay well.  Thanks again for sharing your information...it's nice to hear from people who have been through it already!

Jackie

[malawi]

I had a 2.6cm hurthle cell tumor removed last december.All of my subsequent scans have been clear and bloodtestsTg negative.It was a minimal stage one cancer and i feel greaton 187mcg synthroid.My last 2 TSH levels have been 0.26 and 0.22(has to be between 0.1 and 0.3) for cancer supression.I am a 45 year old male(43 when diagnosed) and have also spent several years in japan(Misawa).Good luck to you and good health!
Roman

[scarlet37]

Welcome to the forum.

Other than getting a second opinion  or another FNA done- there is nothing conclusive.

   Hurthle cells are considered rare and the path they take to change to cancer are considered to be unknown at this point. Testing of these cells is basically in the early stages because of the rarity. Based on those reasons most doctors err on the side of caution and remove as quickly as possible especially when there is one larger growth with or without smaller ones.
  
   Having said the above- the chances that it is cancer is the same as compared to other nodules i think it's something like 90% is benign.

   The decision to wait is entirely up to you.

I chose not to wait- I followed my doctors advice and removed those yukky hurthle cells within 2 weeks of finding them. Mine turned out to be benign. It was a relief!!!

  I wish you the best of luck. Please keep us posted as to your progress.

    teresa
  

[okisensei]

Thanks for your postings.  I have Goggled Hurthle Cell several times and found lots of info, but most of it is way over my head and many of the articles contained conflicting information.  I was hoping to find someone who could explain it all in plain English for me.  I don't really understand the difference between an adenoma, a neoplasm, and a tumor (or maybe the terms are interchangeable?).  Some articles I read say it spreads more quickly and has a higher incidence of metastasis to other areas (lungs, bone, central nervous system) while other articles say it simply has a bad reputation and, if identified early (before age 45) has as good a prognosis as other forms of thyroid cancer (I am 40 so feel I am in the good age range).  I also found conflicting information in which symptoms are more likely to be malignant and which are more likely simply Hurthle cells in an adenoma/ tumor.  Since my ENT is in Florida and I am in Japan, it has been difficult finding a good time to have a conversation with him so my sister has been the go-between passing information back and forth and I feel like I really don't understand my options or the urgency my doctor is feeling.

If anyone out there knows of a different test (other than FNA and ultrasounds for growth monitoring)that is more conclusive for determining malignancy of Hurthle cell change in a neoplasm, please let me know.  Of course, I will do whatever my doctor recommends, but it is a difficult time for me to travel to the US and I'd rather wait until May/June if I knew it would be safe to wait that long.

Thanks!

[AR-10]

After doing further reading it seems a neoplasm is a tumor that may or may not be malignant. So the presence of hurthle cells does not mean cancer.

But if the tissue is malignant, the likelyhood of it spreading is higher. Your doctor probably doesn't want to take any chances. Maybe there is another test that can be run to determine an exact diagnosis?

I think I would follow your doctor's advice and get it out soon.

[AR-10]

Google Hurthle cell and you will find plenty to read.

It sounds like it is a type of cancer that is more likely to spread than other types of thyroid cancer. You should read up on it and then talk to your doctor again. It sounds like something you don't want to let go for a year.

Sorry.

I wish you the best of luck.