Thyroid Follicular cancer - survival rate good?

Ultrasound in Feb. '06 showed enlarged right nodule; uptake showed hot, ENDO said don't worry, likely benign.  Then he was taken off health plan, records lost.  Forward to Jan. '07. GM ordered new ultrasound, showed enlargement since 02/06, referred to ENT (not ENDO). Had FNA this week, I completed Thyroid Uptake today. ENT called with FNA results, said regardless of Thyroid Uptake results due back tomorrow, wants to remove at least partial, since Pathologist who read FNA says samples didn't show definitive cancer, but did show something called "micro-folicles". ENT concerned as indicates possible "folicular neoplasm" which can be higher risk of cancer (CA); has grown from 2.4 to 2.7cm since last Feb. He wants do surgery ASAP, says up to me whether start with partial removal vs total. Says if frozen sample during surgery shows ca, would remove total; if no ca on frozen sample, regular sample could show ca later and he would have to go back in anyway. I asked for referral to an ENDO for second opinion, will go on 02/05, but ENT is seeing if we can get surgery appt immediately following my appt with ENDO as he thinks ENDO will still recommend to remove. Scared, don't understand what to do. I keep reading on internet, folicular sounds awful and I am scared I will die since I am over 40 (47) and it grew from 2.4 to 2.7 in 11 months.  I worry it has spread everywhere.  Anything to calm me?  BP from normal 128/65 to 178/92 with pulse of 123!  Freaking out obviously.  Thinking I should fly from Florida to D.C.to get service at National Naval Med Ctr rather than Fla military base.

[charley1986]

Hey Annette,
Sorry to hear that you are going through this.  I am 38 yo female - just had total thyroidectomy with neck dissection in August.  Had papillary cancer with follicular variant - and it is not a death sentence.  It is, however, scarry.  Mine had been there so long (found by accident - long story) that it had spread to my lymph nodes - 17 of 19 were positive.  Follicular does have a SLIGHTLY increased risk in some ways but don't let yourself get so stressed out......ok, I know it's easy for ME to say, but try.  The one thing that worries me about your post is that you are seeing an ENT.  I know that you are scheduled to see an Endo - and that is good.  Thyroid surgery - as I am sure you have read, does have it's risks.  The parathyroid glands that are located right behind the thyroid need to be protected.  They control the calcium levels in your body and can cause serious stuff if they are damaged.  Do whatever you have to do to find out how many surgeries like this he has done.  It would be better if you could find one that specializes in this kind of surgery.  With the diagnosis that you've gotten, I would have the whole thing removed if I were you.  If for nothing more than for your comfort level knowing that it is out and no little cancer cells are still lurking there.  I wish that I could tell you something more that would ease your mind...I know how you are feeling right now - when the doc used the words 'cancer' and 'you' in the same sentence it scared me to death.  Again, I must stress the importance of having a good endo and surgeon that deal with this all the time.  It could make all the difference in the world.  Please keep posting and let me know how it goes.  I will keep you in my prayers.
Peace,
Charley

[AnnetteV]

I re-read the "rules" again, and see that since all my posts are under this same question, it is only considered the first question.  Thank you utahmama and malawi for taking time to reply also.  I will check out all the references that everyone gave me over the weekend.   This is so wonderful to hear from other people, I feel really so much better.  

I am probably going to have to use this ENT surgeon or another on-base one, as we cannot afford to go use an out-of-plan doctor which we would have to pay 50% of all costs.  So I am trying to have confidence that 2 to 3 thyroid removals a month is an ok rate to qualify him...plus he does other surgeries of the head and neck as well.  Opinion on that as a qualifier for using him, anyone?  He says he has never had a permament vocal cord problem - sometimes a temporary problem ,but no permament damage ever in his 9 years of doing this surgery.  He also says that regardless of whether I decide on partial or total removal, he just starts everyone on calcium or whatever it is, right away after surgery, and waits for the full pathology report to come back to determine if any of the four parathyroid glands were damaged.  He also says that he uses a special instrument during surgery, attached to the breathing tube, that beeps if the vocal cords are feeling any irritation.  That way, he would know immediately to move away from where he's at.  At least, that's the simplified way he explained it to me.  

He says if it is cancer, most likely scenario would be to make me hyperthryoid without giving me a heart attack (some concern about how high my blood pressure suddenly is...duh...).  Then would do the radioactive pill thing.  After that he would start the synthroid (spl) and he says then I might have loss of hair.  

Does anyone know if hair loss always happens with that med?  Already I have noticed in the past 6 months my hair is very dry and will not longer keep a nice curly perm - it just falls flat.  I'm thinking that cuold be a symptom of a thyroid problem, as it never happened before.  Maybe I should get a wig in advance?   My hair is already started to thin at front a little, and I feel awful about showing my scalp if all my hair is going to fall out... This is me, obsessing...

Annette

I guess if I do the surgery now, at least when we travel to Russia in mid-March, I can wear turtlenecks because its so cold, and not have to disclose my full health status to the courts there until we return in June or July to complete paperwork and pick-up our daughter.  I am hoping it will be allowed even if I do have a cancer.    

[malawi]

Also wanted to mention that i agree with charley.Make sure you get a good surgeon ond follow up care with an endocrinologist.Mine was a general surgeon here in FL but he was chief of surgery and had done many before.My Dr told me because of size of tumor and my age and the fact that it was a cold nodule he would recommend a TT.My fna results were inconclusive(just read follicular neoplasm)so i had to wait a couple of days after surgery to find out.My surgeon said he did not think it was cancerous because it came out so easy and was not attached to anything(neg for lymphnode involment)but if it was it was very minimally invasive.Turned out that it was follicular...

[utahmomma]

Please understand that thyroid cancer is the most treatable cancer you could have.  I have it as do three of my sisters.  It's NOT a death sentence.  It is very slow growing and, after thyroidectomy, can be treated in a very specific, targeted way with what we call RAI - basically radiated iodine.  The thyroid tissue is the only tissue in the body that absorbs iodine so when it is radiated it can specifically kill off thyroid tissue without killing off other tissues (no hair loss, no other effects you would see in radiation or chemo for other cancers).

Here is some great information:
http://www.mayoclinic.com/health/thyroid-cancer/DS00492
http://www.endocrineweb.com/thyroidca.html
http://www.cancer.gov/cancer_information/cancer_type/thyroid
http://www.ufscc.ufl.edu/Patient/content.aspx?section=typesofcancer&id=36913
http://www.cumc.columbia.edu/dept/thyroid/

The survival rates for both papillary and follicular carcinomas are very, very good.

I have to second something that Charlie1986 said.  I only had half of my thyroid out and they didn't find the cancer until I was in recovery.  Even though I didn't have any nodules in the other half, three of my sisters were also diagnosed with papillary carcinoma within the following 12 months so I had the second half out.  Knowing what you are going into surgery with, I would also opt to have the ENTIRE thing out.  Whether or not the final pathology report is positive for cancer, at least you know it isn't growing in your throat any more!

There are others on this forum who went through similar experiences and I'm sure they will chime in too.

The most important thing right now is to find a surgeon who has done LOTS of thyroid surgeries . . . successfully  :-)  I didn't have an endocrinologist until after the surgery and, honestly, they are wonderful at controlling thyroid levels but they aren't surgeons.  Please find one who is very good.  

He/she doesn't necessarily need to be an ENT surgeon (my children have a great  ENT surgeon but I wasn't going to let him take out my daughter's thyroid - he specialized in sinus and tonsil surgeries).  My entire family (seven surgeries in all) had the same wonderful general surgeon.  She specializes in gallbladder and thyroid surgeries.  I'm glad I asked around.

You aren't going through this alone.  There are many, many of us here who have been through very similar experiences.  It's not much fun getting into this club but the members are the best!!

Please let us know.

[AnnetteV]

Thank you both Roman and Charley, and thank you for your encouragement! I really do feel lots better - having lost both my parents to other types of cancer (not thyroid), the word is horrifying to me. Roman: Yes, I am over-researching on internet - I will stop that for a few days if I can, and I will try and not worry :).  It is hard being under military healthcare system (husband retiree) to get "coordinated care," especially with reduced services on base due to war deployments.  Even the surgery will be done off base at at hospital the military "rents space" at hospital since they closed down the on-base hospital.  Charley: this ENT is a surgeon who does only head and neck stuff, and says does 2 to 3 thyroid removals each month.  The ENDO appt I have is off-base with private practice, on 02/05.  My ENT surgeon is trying to get a surgery date scheduled for right after that. I am hoping the the off-base ENDO consultation will just guide me whether to have the ENT guy do full or partial removal.  I have also requested via Mayo's email request system, an appointment at the MAYO clinic in Jacksonville, FLA, a bit of a drive, and insurance will not cover it as "out of plan" but worth it for a consultation I think.  I will not delay surgery to get the opinion at MAYO though.  I am also still thinking of flying up to Washington D.C to be seen at the big National Naval medical Center, but that is a real inconvenience, and if this is survivable then I will try and calm down and trust that Forida has as capable surgeons as elsewhere.  It is also scary because my husband and I are in process adopting a child from Russia, and are scheduled to travel in mid-March to meet whatever little girl is chosen for us.  The Russian officials may be weird about it if I have a cancer and can turn down people for stuff, but we are staying hopeful that if it is cancer, they will understand that thyroid is so treatable.  Well, taht is my ramble.  I am concerned since I read I can only post 2 times in 6 months, so I might have used up all my posts as of this one!  I will keep checking this site though.  Thank you so much, what a great community of friends.  Annette

[malawi]

Stay positive and congrats on your adoption!!Im sure everything will work out fine.Im ex army and my father actually lives in palm coast and goes to the mayo clinic in Jax(im down in melbourne)for his prostate cancer checkups.He is 72 now and doing very well.The support and info on these boards has been very helpful to me so please visit them whenever you need..
Roman

[malawi]

Hi
IM a 44 year old male.I had TT for a 2.8cm stage 1 follicular cancer on dec 12th and my rai on dec 27th>My first body scan was on Jan 8th and was all clear!I am on 125mcg of levothyroxine and go for my 6 week blood test on feb 19th.I basically reacted the same way as you.As soon as i heard the word cancer i started freaking out and over researching on the internet.I read thyroid for dummies by Dr. Rubin and the chapter on thyroid cancer really put things in perspective for me>Yes of course its serious but people in our age group with stage 1 pap or foll cancer%100 percent of them were alive and healthy 20 years later..in fact most people live and die with the disease without even knowing they have it!!It has an overall cure rate of about %95.Less than %1 of people who have thyca die from it.Its not even in the top 15 for cancer related deaths!.I realize that im throwing alot of percentages and statistics your way and there are no certanties in life but this is a very treatable cancer and like my surgeon told me you will probably live long enough for something else to kill you HA!!My blood pressure is back down to normal now(it had skyrocketed with all the dr visits and waiting for tresults)and im feeling pretty good......try to keep things in perspective and think positive thoughts and you will come through this just fine...
Roman

[malawi]

Your surgeon sounds experienced enough to me.Its important that you feel comfortable with whoever does it.The Rai treatment is easy ,its being on the low iodine diet before hand that stinks..Ha HA...im not sure but i think hair loss is one of the symptoms but grows back once your meds get stabalized..everyone reacts differently..so far i havent noticed any hair loss but have only been on my meds since dec 28th
Roman

[utahmomma]

Don't stress too much about the "rules" - we won't rat you out.  :-)

Being either hyper or hypo can lead to hair loss but it's not the hair loss most people associate with cancer - it's more hair "thinning" - not clumps of hair coming out.  I've been through it a couple of times for the surgeries, med adjustments, RAI, etc. and no one noticed but me.  :-)

*if* it is cancer your endo will want to keep you on the hyper end of the range to retard any thyroid tissue growth.  Even if you have the total thyroidectomy (TT) there will still be some thyroid tissue left since it is attached to nerves and vascular structures.  That's what the RAI is for - to "nuke" what's left.

Turtle neck shirts, scarfs, chunky necklaces . . . only the coolest of people wear those.  :-)

It sounds like your surgeon knows how to handle thyroid surgeries - many (MANY) surgeons don't understand the very common calcium problem, it sounds like yours is on top of it.

You'll get through this with flying colors then on to bigger and better things - it sounds like there is a beautiful little Russian angle in your future.  Congratulations (and don't let a little thing like thyroid cancer stop your chances of being a mother to that little girl)!

Please keep us posted!

[AnnetteV]

Closing in on 2:00am, so I am going to bed.  Feeling much happier and that there will be a positive outcome regardless of whether cancer or not - thank you everyone!  I'll let my husband read these posts tomorrow also - he's very worried about me too, and neither of has much family we can lean on for support, so I appreciate everything.

I will probably keep posting on this, the same thread to my original post 01/18/07, as I have more worries that come up (probably daily!).  Best of luck to everyone else too - wish I could share advice or opinions too, but so far still a newbie to all this.  What the heck did people do years ago without on-line support groups, and without the diagnostic tools there are now...

Goodnight.

[kimcle]

Good morning;
I just read your posts.
I was diagnosed with follicular thyroid cancer this past
September.
Had a completion thyroidectomy August 29th received my
cancer diagnosis in September.
Had RAI December 15th.
I am now 4 weeks post RAI.
Climbing my way back to good health.
My pathology was Follicular Carcinoma (3.7 CM)minimally invasive oncocytic.
Also I had 3 small papillary microcarcinoma's.
I dragged my feet having the thyroidectomy.
But I am really glas that I did it.
I find that a sense of humor really helps.
My doctors feel that I will make a complete recovery.
So try not to worry and keep a positive attitude.
Post when you need to talk.
Good Luck

Kim

[Amanda7980]

I had follicular thyroid cancer in 2001 right before my 21st birthday.  All the tests before surgery, the ultrasounds and biopsies were inconclusive.  They performed the thyroidectomy in July and did a frozen section that was STILL inconclusive.  However, they decided to go ahead and remove both sides of the thyroid to aviod having surgery twice.  It was not until two weeks later after the full pathology report that I found out it was in fact cancer.  A couple weeks later I had 150 millicuries of RAI and have been on synthroid ever since.  Since then, my thyroglobulin levels have been undectectable and my scans have all been clear.  So, in short, it is a very treatable disease and while scary, can be overcome.

[charley1986]

Hey Annette,
Sounds to me like you have a pretty good surgeon - of course, the more TT's he does, the better - but it sounds like he is very aware of what could go wrong.  I remember my surgeon telling me about that thing that was hooked up to my nerves, too.  The surgeon I had, has done more than 1,000 of these and can't remember the # for partials.  I did have some voice stuff for a while - which is that your voice is not as strong - I couldn't yell (my son was happy) and I couldn't sing in the choir at church....I had my surgeon in August - and just have gotten back into the choir....so healing time with that is about 5-6 months.
Good luck to you - and keep in touch!!!
Peace,
Charley

[vineyardgal]

I also had folicular variant of papillary cancer - four years ago.  Please do research you surgeon.  I didn't.  The ENT I let do my surgery was very young and hadn't been in practice for more than 9 months.  The first surgergy went well.  Then after cancer was diagnosed, the second surgery was not so good.  I woke up in ICU and was there for 2 days with calcium levels being monitored.  That was ok, the bad part was my mouth and tongue felt burned.  Four years later it hasn't gotten any better.  I firmly believe some sort of nerve was nicked - or something like that.  My dentist has given me Salagen to help with dry mouth.  That works but nothing helps with the burning mouth and tongue.

[AnnetteV]

Thank you everyone for your words of encouragement.My surgery is scheduled for Monday, Feb. 5th.  Unfortunately, that was the easlies the ENDO referred could see me, but I decided to cancel that appointment until after the surgery, otherwise next surgery date open was Feb. 12th.  Want this thing OUT if it is cancer.  I have asked for the partial only, unless frozen section shows cancer.  I don't mind going in again for surgery if other half needs to come out, would prefer to not go on meds for rest of life if it turned out to not be cancer.  The adoption agency was not that encouraging when I spoke with them yesterday.  They said if medical report shows I have cancer or being treated for cancer, Russians can be weird about it.  Hope this does not derail our plans....Will keep posting.  Thanks so much.
Annette

[AnnetteV]

I've been obsessing and reading too much, but what is disturbing is that it looks like what the stats show is that IF I do have follicular cancer, my five year survival rate is not that good.  Am I misinterpreting?  My right nodule growth is about 2.7 cm, and that seems very large from what I am reading, and as it was only caught by a fluke, and then noting done for a year since it was first found, I am feeling very doomed.  Maybe just a depressed night.... I wish my surgery date could be moved up.  I am going to see if I can get in to see the ENDO referral I was given before surgery with the ENT on Feb. 5th (since the ENDO appointment had been scheduled that day, but then surgery date opened up and I didn't want to wait until Feb. 12th whioh was next available).  I am feeling so sad about this, especially since the adoption plans were just coming together, and we were supposed to have gone in mid-March to Russia.  

Is the ENT just throwing out stats to be (he said 50-50 chance that it is folicular cancer, or other form of cancer)?  He is basing judgement on the fact that there are micro-folicles in the FNA sample.  Do micro-folicles EVER appear in non-cancerous growths?

Am I doing the right thing by just opting for a 1/2 out if the frozen doesn't show cancer?  I am not scared of a second surgery, only want to avoid life-long meds if possible, and so would feel that I amde a bad decision if no cancer and I had told them to take the whole thing out.

I also THINK I read that if the micro-folicles aren't because of a follicular neoplasm, than they can be a symptom of an adeno-neoplasm (is that correct term) and that can have a higher incidence of turning into cancer.  So then I guess I should have told them to take the whole thing out....

Reading about kidney stones and stuff is another reason I don't want to lose my thyroid if it isn't a cancer.

Gosh, I wish he hadn't said 50-50 chance I have cancer :(.

Annette

[mocha232]

The worst thing you can do right now is look up stats on the web. I've seen the survival rate stats and I don't know what they actually refer to, but there are virtually no deaths regarding thyroid cancer. It is the most CURABLE cancer you can get. There are a couple very rare types (anaplastic, hurthle cell) which are worse but even then it's very treatable. Follicular is the second most common thyca there is and everyone who has had it is doing just fine. I am having surgery for a Hurthle Cell neoplasm which is a pretty bad finding but my outlook is good and I know I will come through this with flying colors:)

Regarding "adeno-neoplasm". Adeno is short for adenoma which means benign where as carcinoma is malignant. Adeno-neoplasm is basically a benign tumor. I have a hurthle cell neoplasm which means that over 75% of the cells in my nodule are hurthle cells, so it is officially and clinically a "hurthle cell tumor", but that doesn't mean it's malignant. It still may be benign. Think "HAPPY THOUGHTS" :)

[mocha232]

Just to let you know that I know what you're going through:
I'm 27. I have a multinodular goiter with about 10 nodules. I have a dominant nodule (much larger than the others, 2.4cm) which is concerning. I have had this for over 2 yrs. and I'm still here. Thyca is a concern, but it's very slow growing and you don't need to rush into surgery. Waiting an extra week isn't a big deal and could help you understand what's going on. Obviously, none of us want these things inside of us but it's not life threatening. My surgery was delayed an entire month because I had a heart rate of 140 during my preop. My nodule was 1.2cm 2 yrs ago. It has grown 3mm every 6 months until now. It is now 2.4cm (which is large, dr can feel it on exam). My entire thyroid is now so large that you can feel every lump and bump by touch. I have had 4 ultrasounds, a nuclear scan, and 2 FNA biopsies. My first FNA was non-diagnostic, 2nd one showed all kinds of bad stuff (Hurthle cells galore:) and I'm not having TT until Feb 16. You WILL be ok

[utahmomma]

You are reading it wrong.

Check out these sites:
This one (American Cancer Society) shows Stage I and II follicular cancer with a 100% 5-year survival rate
http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_How_is_thyroid_cancer_staged_43.asp?sitearea=

This one is from Columbia university and shows papillary and follicular cancer with a 99% 20-year survival rate
http://www.cumc.columbia.edu/dept/thyroid/staging.html

Some of the figures you may be looking at are local recurrence which is not that big of a deal.  I've had local recurrence and just went through RAI for it.  My sister had it come back twice and had RAI.  Not a big deal - that's why we get our labs run and see our endos about every 6 months.

Don't over investigate and drive yourself crazy - this is a very treatable and curable cancer!

About getting 1/2 out versus the entire thing.  If it is follicular cancer (or even papillary for that matter) you will probably need RAI sometime.  You cannot get RAI for cancer with 1/2 a thyroid remaining.  There is also the chance of microcancers in the remaining 1/2.  I would really suggest - based on your FNA results - seriously discussing the TT with your doctor.  Taking one *tiny* little pill the rest of your life beats worrying forever or doing what I did and having to have two surgeries.

The problem is they never know for sure what we have in your thyroids until they are removed and biopsied.  As some on this forum will tell you, sometimes you don't get final results back for over a week and by that time they can't wheel you back into surgery.

Lots of things to discuss with your family and endocrinologist.

[malawi]

Hi annette
i think its another one of those things where its a possibility but not the norm.Keep yourself well hydrated with lots of water and you should be ok.This is what my endo told me anyway..Hope you have not been worrying as much lately..
Roman

[AnnetteV]

Hi everyone,

I was able to get an appointment with the Endocrinologist for a seocnd opinion and saw him yesterday.  Boy, did I feel better.  Even cried in his office thanking him for making me feel more comfortable with what's happening.  He's board certified, has been treating thyroid as his speciality since 1985, and said in his opinion mine will not be a cancer.  He bases this on all the lab work, the FNA, the history of growth, etc.  He kept telling me to not be worrying about the treatment for a cancer since he feels very strongly that it isn't.  Then he was able to reassure me that I will not die if it is a cancer, he has never lost a patient.  He does want to speak with my surgeon in advance, and he does want me to have the entire thyroid out, as he feels it is a "failing organ" for other reasons than cancer and will just be a problem down the road.  He says I should not be afraid of the Synthroid I would be put on.

Of course, now I am worrying that I am going to immediately get kidney stones.  Am I reading wrong, or doesn't synthroid cause stones in everyone?  Is there any way to avoid stones?

Thanks so much!

Annette

[azqtpies]

PLEASE dont freak out, ther is no urgency on your removal.... I just had a partial right lobe removed 8 days ago.... I still have a nodule on my left .. my FNA was showing benign at first then 1 year later showed suspicious for follicular adenoma neoplasm which is a benign tumor had FNA repeated and was the same suspicious dominant right nodule mine was cold and 3.0 CM I choose to have it remove, on the table it came back benign and final was as well!!!! IT WAS THE BEST THING I EVER DID!!!! no you wont lose your hair, you wont die you will be just fine!!! this is a very easy surgery, some risk but they far out way CNACER. I did just great as most people do! these nodules are 85% benign and your is hot makes it 90-95% benign...! If it were to be cancer it is t he MOST curable and MOST SLOW growing =cancer to have very very treatable.... SO KNOW NEED TO PANIC!!!! listen you will be fine... we will all help you get through this...:)

Kelly~

[Amanda7980]

I've been on synthroid for 5 1/2 years and have never had a kidney stone.  I don't have any effects from the synthroid.

[kaye96]

hI Annette! i;ve been reading most of the comments here and glad to know that most of the people who undergone surgery was fine. I'm working abroad and having my vacation as of now. One day as i accompanied my father to his Doctor for a check up somebody ask me if we have some history of goiter in our family. And I told her yes we have. She told me that because she noticed a lump on my neck. I was scared that time and decided to see an endo. The endocrinologist did a FNAB and to my surprise the result was a papillary carcinoma. I didnt know what to think and say that time..I tried to calm myself and told myself to become strong. I am planning to have a second opinion, to see another endocrinologist, to have another biopsy again but the problem is that my vacation was about to finish and i need to go abroad for my work. By the way, the endocrinologist gave me euthyrox for six months because I told her that i cannot able to have the surgery now and i'm going back after six months.

I just want to know if there is an effect if i will not do the surgery right now. Is it ok if a will do it after a year? After six months I'm planning to have the second opinion. is there be any problem? I'm afraid if i will do the check up in other country maybe it might affect my work? One more thing regarding RAI , i 've read that it is done after 6 weeks after doing the surgery. Our vacation usually takes only 30 days so i'm afraid not to complete the session. Thanks and waiting for the advice.