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Hürthle cell carcinoma

Stacie3071's picture
Stacie3071
Posts: 23
Joined: Sep 2011

Hi everyone..

I was just recently diagnosed with Hürthle cell carcinoma. I am now on my second opinion on how it should be treated. I had my right thyroid removed on Aug 30, 2011. And it came back witha positive diagnosis of Hürthle cell carcinoma. The first surgeon said he wanted to take the wait and see approach for treatment. I did not like this so I sought out a second opinion and he reccomends surgery to remove the rest of my thyroid as well as radio active iodine.

I guess what I am looking for here is there anyone else who is at this point of treatment or may have just done it? I would like to have someone to talk to about it.
And someone who can tell me the right questions to ask the new dr I am going to. I want to beat this thing!!

CLRRN's picture
CLRRN
Posts: 126
Joined: Jun 2010

Hi,

I'm sorry that you've found your way to this board (CSN) but welcome! I think you will find everyone supportive and very helpful.Please make sure you visit www.thyca.org as it has lots of information including "questions to ask your physician".

I was recently diagnosed with follicular carcinoma. I had a partial thyroidectomy (left) on 8/16 for a thyroid nodule. The pathology came back follicular carcinoma w/hurthle cell metaplasia. I had the rest of my thyroid removed on 8/23 and scheduled to have radioactive iodine (RAI) on 10/13. There was NO question as to whether or not to have the rest of my thyroid removed-the surgeon and endo STRONGLY recommended it. I was all for it, GET IT OUT!!! I'm currently on Cytomel (25mcg 3x day-but only can handle it twice a day). I will stop Cytomel and start the low iodine diet on 9/23 in preparation for the low iodine diet.

I'm sure you will find that others will post personal experiences, suggestions and opinions. Please keep us posted during your journey and what I call a "process".

Chris :)

nasher
Posts: 507
Joined: Apr 2010

I would recommend get it out.

if your right thyroid had Hurthle cancer odds are the left side dose too.

I have heard of wait and see approach before they were sure if it was cancer or not but never after they found out it was defiantly cancer.

as for RAI there are pro's and con's about it and you need to be informed about both of them and know a lot more about the amount of cancer and such.

....
wow my story has fallen all the way to page six.... but here is a link to my story

http://csn.cancer.org/node/204377

...
myself I would in most cases push for RAI treatment, but it needs to be YOUR choice.

Doctors are used to people being completely uninformed and following the doctors advice 100% of the time. Remember its advice... any time they come up with there plan for YOUR treatment make sure you are there to ask questions and make sure you control your treatment.

they said it best in the movie Patch Addams
---------
At what point in history did a doctor become more than a trusted and learned friend who visited and treated the ill?
---------
yes doctors know a lot about medicine
yes doctors know a lot about the thyroid
yes doctors know a lot about cancer
BUT
you know about you
you need to be your own advocate

don't worry about not knowing a lot about medical stuff right now
I still remember back in early December 2009 when i was told i had a goiter on my thyroid and I had to ask. "what is a thyroid and where is it?"

as for what the right questions is honestly I do not remember the questions I asked and I didn't know much back then.

my best advice is study the posts here and don't be afraid to go back a few pages make notes and come up with what YOU think are good questions

come back here and post them to us... we might be able to answer some and we might be able to help you rephrase them to a better question, and the biggest point we might then have the questions down somewhere so the next person also can get a list of questions.

also print out 2 copies of the questions and bring a friend or relative with you to your visit. one copy of the questions goes to the doctor and you keep the other and you discuss them... you write down the answers the doctor gives you they may not get to every question and a lot of them you will find out later were not good enough answers. then you can ask us about your questions and answers find the ones they didn't answer and come up with new questions put them together and get ready for your next doctors appointment

Grandglow
Posts: 3
Joined: Oct 2011

I will start by telling you I am 32 years old. My story starts by telling you I went to a doctor after Shortly giving birth to my daughter who is now 5 years Old I wasn't feeling right. After doing some blood work they sent me to a endo. Who said I had hashimotos thyroiditis and had to take a pill because I was hyper and than I was told I would have to take medication for the rest of my life for hypo. Well long story short was never good at taking my medicine would always forget. I finally after a couple years and life changes began staying at home as a at home mom and had no health ins. So decided I would just stop taking my medication I have been off it for a year. Well this is when my nightmare starts I have been struggling with horrible bone pains I describe them as someone taking a potato peeler to my legs. Pain is mostly at night or after being on my feet alot also joint pains in my wrists they ended up getting so horrible I recently decided I better get in to a doctor I just figured I'd go in and they would do blood work and tell me I needed to get back on my meds. Levothroxine but I was shocked to find out my levels were normal. My doctor decided to refer me to a endo. Where he asked questions and then felt my neck and thought he might have felt a lump on my thyroid. Well he decided he wanted a ultrasound done so went in got one done was told I have a 3cm tumor on left side and small ones on right side. He told me people have them live with them no big deal but because of the size of the one on the left he wanted to do a fine needle biopsy got that done same day. Came back hurthle cell lesion so now I see a surgeon on the 11th at the cancer center, which freaks me out becAuse he told me it came back not cancer but there was no real wAy to tell because of the type of cell it was he said there's no real way to tell unless they take it out. He wanted to do a needle biopsy of a smaller one on right side before I go in for surgery of the one on left, well he called and said they didn't get a good enough sample which he said might happen. I am freaking out because I am scared after reading alot about it on the net even though I haven't been diagnosed or have yet to have the surgery can anyone tell me if they have had any symptoms I am having not sure if they are related at all but body aches are bad a night seems to come and go and move around but mostly legs and hips. I have recently been having some I believe to be sciatic pain on right side or in my hip. My body itches so bad at night making it hard to fall a sleep? I am so freaked out about having surgery and don't like to bother my family because I don't like people to worry but I am scared.

amorriso
Posts: 186
Joined: Oct 2010

First - you are not alone - we are here for you even if you cant see us. Take a deep breath - you will get through this. I was diagnosed with papillary carcinoma of the thyroid last year - its been a roller coaster of surgery, treatment and emotions. BUT i am doing ok.

I too have let and foot pain - no one is quite sure why, but I believe it is related to my condition. As my meds have been adjusted it has gotten better. I also had the itchy skin - thats pretty much gone now.

Start with the surgeon..ask him what is plan is. Will he take the whole thyroid? Ask and ask and ask. Take someone with you - your partner or a friend - they can help ask the questions and help to remember the answers.

Come back to us once with what the surgeon says - there are lots of people on this site who can give you good advice.

Hang in there.

Andrea

Grandglow
Posts: 3
Joined: Oct 2011

Thanks I will let you know what happens on the 11th when I meet with the surgeon. Thanks lots!!!! :)

csm2007
Posts: 25
Joined: Dec 2010

Hello,

I am at a loss on why the first doctor would not take out the remaining thyroid tissue. I had two surgeries to complete my thyroidectomy. Left side first, Hurthle carcinoma 4.5 cm found then right side came out and tall cell variant papillary carcinoma 1.1 cm was found and it had already spread into surrounding soft tissues and lymph nodes. I had 150 mci's of RAI on April 15th. I am glad you sought a second opinion, it sounds this doctor is taking the same approach as mine did. Although I am still in treatment, as of my last visit my numbers are finally coming down and I may be finally headed in the right direction. Feel free to message me if you have any questions. Best of luck with your treatment. Welcome to the boards!

Stacie3071's picture
Stacie3071
Posts: 23
Joined: Sep 2011

After all the information that I found on the internet I could not understand why the "wait and see approach" was best. The Surgeon I am going to now has scheduled my next surgery for Oct the 5th. We were actually going to do it on Sept 28th but the ultra sound he ordered on my lymph nodes came back suspicious.... now I need to have a needle biposy on 3 of them to see if the cancer has spread or if maybe they were enlarged/suspicious due to the other surgery. The past few days have been some what tormenting because i am now worried that it has spread..

So glad now that i did not wait to see...

Thank everyone so much for responding to me... I am truly trying to do my best not to break down over this and stay strong.. but it is hard... this is truly the toughest thing that I have had to face and I feel a battle is building..

sfl67
Posts: 55
Joined: Nov 2009

Stacie,

I am a two year Hurhtle survivor. My surgeon asked that he be allowed to remove my entire thyroid if during surgery the right lobe was malignant, and it was; my FNA came back inconclusive with atypical cells. I was 59 years old and had a 3cm nodule; I was stage 3 with a widely invasive tumor. I had 106.8 mci's of I-131. My first year scan indicated either recurrence or residual, but so far my levels are holding very well. I take 150mcg's of Synthroid daily. Hurthle is termed rare and aggressive and doesn't always respond well to the radioactive iodine, but sometimes it does. I met a friend through this website whose diagnosis was the same as mine and she is termed cancer free so it can happen. With this cancer we must be diligent and I think informed.

I wish you well with your surgery and treatment. Try to stay positive and I agree it is a battle.

Please let us know how everything goes when you feel like posting. You will be in my thoughts.

Thyca.org is a very informative site in case you haven't found it.

hcmmcguire's picture
hcmmcguire
Posts: 7
Joined: Aug 2011

Hi, I was diagnosed with stage 2 HCC in 2007 at age 33. My right side was removed first and 6 wks later the rest. This June, I started a blog about my story, http://hurthlecellcarcinoma.blogspot.com/2011/06/original-diagnosis.html

I know the fear and the desire for a second opinion. I know that HCC is very rare and most doctors want to say don't worry. I have done much research on my own and have one of the world's rare HCC oncologist at the University of KY. I don't know why God saw fit to get me in touch with this set of doctors but they saved my life. HCC is nothing to wait and see!

I am preparing for my 2yr scan and I will be posting here and there (I have the fuzzy cytomel brain right now). If all is well, I will have survived 4yrs and with HCC that is awesome!

Good luck to you and please read the blog from the beginning. If you have questions it could answer them or find me on Facebook :) http://www.facebook.com/profile.php?id=1451865800

sfl67
Posts: 55
Joined: Nov 2009

Hi,

Thank you for your response! I'm sorry you are dealing with this cancer at your age, but I am glad to meet a survivor. I have had great difficulty finding a doctor that is knowledgeable of this cancer.

Wishing you well with your next scan and that all of your results will be great. Please let us know as you have time.

hcmmcguire's picture
hcmmcguire
Posts: 7
Joined: Aug 2011

Hi everyone, Just coming back to update my status. My November scan sans Thyrogen was clean. I now am going for my 3 yr stent of no scans :) God willing I will make it!

I am updating my blog as things progress. I have found it very therapeutic to get it out of my system. After all the treatment and side effects, I realized that I should tell others and help them through the ups and downs that come with surviving Cancer. So, I do here, http://hurthlecellcarcinoma.blogspot.com/

I also have found inspire.com from the ThyCa site which is basically another board that folks post to about their questions and concerns. It is a little better suited to the user as opposed to this board. If you want to check it out, http://www.inspire.com/groups/thyca-thyroid-cancer-survivors-association/

I will still come back here occasionally... I wish you all the best of luck!

tough_cookie
Posts: 1
Joined: Oct 2011

Hi Stacie,

I had my total thyroidectomy last Jan for HCC too. First, I had my left thyroid removed sent to pathology and came out positive with Hurtle Cell Carcinoma. After a week, I had the right lobe removed. My Endoc advised to take RAI of course for same reason. "to make sure every cancer cells will be taking care of "if there's any left behind, or spreading case". I wasnt sure about taking the RAI because theres a lot of side effects with it. So we asked for second opinion from Harvard University Hospital and replied "not necessary in my case", then I was still hesitant for their advise. We asked another opinion in SLOAN Kettering and replied " not necessary" and so decided not to take it. Im in my 9th month after my total thyroidectomy and so far so good. Im taking 88 mcg of synthroid. I still have to get my blood test anytime soon. Ill let you know the result. You have to think about taking RAI not everybody's happy with the result and its not guaranteed but there's a possibility of developing side effects. "unless theres spreading happend" and thats worth to take RAI.

Good luck and let me know hows everything with you...

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