Why Surgery for only Suspicious???

[Lara Sunny]

My doctor wants to cut out 1/2 of my thyroid, but so far I have refused the surgery. This is what's confusing me:
1) Why cut out 1/2 of my thyroid if there's only a suspicion? (e.g. They can't rule out cancer.)
2) Why not just wait and see, especially since Thyroid cancer is so rare and, if it is present, it's one of the easiest cancers to treat?
3) If they cut out 1/2 of my thyroid and later I get a nodule on my other 1/2, they'll cut out that, too. Then I would have to take medication for the rest of my life... But what if I don't have healthcare access later on? What happens to my body without hormones?

So, my ultimate question is:  should I just go ahead and do the surgery to get 1/2 of my thyroid out so they can look for cancer?

Here's my situation:
1) Lump appears in my throat suddenly - like an adam's apple (I could see and feel it).
2) I got a FNA biopsy and they drained the cyst. The FNA results came back suspicious.
3) I got a CT Scan. It showed no disease beyond the thyroid. Only a low attenuation lesion on the left thyroid.
So, the doctors want to cut out that half of the thyroid to disect it to look for cancer. Note:  My older sister had a lump 2 years ago and got her half cut out, but there was no sign of cancer. So, couldn't this just be a cyst that formed naturally or due to strenuous exercise???

[Mark Lupo, M.D.]

I would send the FNA slides to an expert cytopathologist to get a second opinion.  I usually use Dr. Massoll at the University of Florida for this.

"suspicious" can mean a variety of things depending on who is reading the slides.  If Dr. Massoll says suspicious, then it's about 70% chance cancer -- just to give you an idea of odds.  

Sometimes surgery is needed to make a definite diagnosis and while thyroid cancer is often a slow process, I usually recommend making the definite diagnosis as soon as possible to avoid being one of the exceptions to the "slow growing" rule.

[Lara Sunny]

PS my thyroid TSH levels are normal. No other problems with it to my knowledge.

[trevorsmom]

Hi Lara,

I had exactly the same situation in September of 05.  I went ahead with the surgery.  Not doing the surgery just wasn't worth the risk to me.  I didn't want something to change between appointments to check it.  They went in and removed half.  They knew right away that it wasn't cancerous.  I haven't had to take thyroid meds this whole time, but just had labs done and will start now.  TSH is 6.2 and T4 is borderline.  The half that they left in had nodules on it, as well, but they were very small.  It was still functioning, so they hoped by leaving it in, I would be able to function without meds.  The surgery was pretty simple and easy to recover from and a pretty easy decision for me.  I know that most forms of thyroid cancer are easily treatable, but there is a very small percentage that is more aggressive and the prognosis is worse.  The chance that I would have that kind wasn't worth the risk to me.  My thyroid levels were normal, too.  I'm sure you'll probably end up in the same boat I did, if you go ahead with the surgery.  The question I had to ask myself was if I wanted to live with that hanging over my head every day.  Good luck with your decision.

[worried.sick]

Just read your post and thought I could add my story - almost identical.  My doctors weren't overly pushing surgery- the FNA results couldn't rule out cancer, but they just recommended keeping an eye on it.  However, when my symptoms persisted (swallowing probs/heartburn-type feelings), they suggested exploring the options of surgery.  The surgeon said anywhere from 5-20% chance it could be cancerous, and that it was up to me if I wanted the surgery (half or full lobe).  I decided to remove my left lobe.  Turns out it was cancer (and I also have Hashimotos).  So now, I'm scheduled for another surgery to remove the other lobe, but I have no regrets.  I recovered from the initial surgery very well and have been living with 1 lobe quite comfortably (no meds). If my thyroid hadn't been giving me these symptoms, surgery probably wouldn't have been considered, so, I'm grateful for having this condition!!  Living with the anxiety of the unknown was not a comfortable option for me.
Best of luck to you!  

[frankenmom]

I just had a total thyroidectomy last Friday.  Basically no pain, no side effects to voice, parathyroid glands.  I will need meds the rest of my life and I have to say I am sad, and I feel a distinct loss not having it at all, and wonder if I should have tried to keep at least half.  I had nodules on both lobes and the largest nodule was biopsied with a finding of "folicular lesion"  not benign, not cancer, just higher risk of cancer --20 percent.  I struggled with the decision for 2 months and then just went for it after a second opinion.  One doctor reccomended take out half, the other said remove it all.  So much info on the web, was somewhat overwhelmed but read that 70 percent of time the half can't totally compensate and need meds anyway.  Now I sort of wish I had tried to keep half, I am young and healthy, seems like it might have worked.  BUT I don't know my pathology results yet, if it turns out cancer, I will be glad its gone.  I did have some of the same concerns as you-- what about when the apocolypse comes and I can't get synthroid??  This is a pretty unlikely event, so like life, that risk seemed lower than 20percent chance cancer.  Plus, like someone else's comment, always having that hangng over you.

[pep88]

I just had the same situtation.  I found a nodule totally on accident looking for blocked salivary gland on CT scan.  Fine needle biopsy, which I was CONVINCED would be negative, said it was undetermined, but could be pappilary cancer.  

I just had the surgery on Thursday last week.  They told me they'd take half of my thyroid, biopsy the nodule while I was on the operating table, and take it all if it was cancerous.  I woke up without my thyroid.  And, without the malignant cancer that I never thought could or would be cancerous, because the odds are so small with small nodules.  It was totally incapsulated and had not yet spread to the lymph system.

I think it's worth the risk to get the cancer out.  Find a doc who will only take half and have pathology done in the opperating room, and the other half if it's cancerous.  There is a chance that the pathology will be inderterminate.  In that case, my doc told me that he'd leave the other half in and wait for full pathology before having more surgery to remove any more.  

For me, I have a 5 year old child, it was totally worth it!  If I had let it go, because it might not be cancer, my daughter might not have her mother there for her in the future...  

I have a small scar, and I have to have the RAI treatment in about 4 weeks.  My body feels very odd and it's trying to adjust to the T3 meds my doctor gave me, but I don't have cancer anymore.  And I can say it was worth it.  Good luck making your decision.

[an23]

Hi, i am in the exact same situation as lara sunny and you frankenmom. i am only 23 and am worried sick about what i should do with my thyroid. i tired to ask Dr. lupo my question for some time now but his box is also full.

Anyways, so here is my situation i have had a nodule in my thyroid for 4 years now and have been keeping a close watch on it, it was 1.6 cm and now 2.0 cm. I did blood test, ultra sound and biopsy on it every year. it has been benign every year EXCEPT this most recent one. The results came back showing "possible underlying follicular neoplasm may not be completely excluded". My endo doctor suggested surgery so after reading everything about the surgery and medication and SCAR i am so scared. I literally dont know what to do.

If you don't mind, can you please let us know your pathology test result and any advice for my case? thanks!

[msfergy]

I am in the same situation, Monday half mine is going bye bye if needed they will take it all. They could not get what they wanted on my biopsy so surgery is the next step for a forsure diagnose.

[shmaners]

Hi, I am only 28 and just had an approx 2cm nodule removed that came back after the FNA as inconclusive, suspicious of papillary cancer.  I'm really just here to support your fear of the surgery and scar...as I was petrified.  I went into surgery for 1/2 thyroidectomy, and they would send the 1/2 for a frozen section to pathology.  I'd stay under for the results, and if cancer, then the entire thyroid would be removed.  It turned out to be papillary cancer, and they removed my entire thyroid.

The surgery (although three times as long as expected) was fine, and I am absolutely AMAZED at how fast the scar is healing and how fantastic it looks.  Most people don't even notice it's there.  I know everyone's story is different, but I just wanted you to know as another 'younger' patient, I know how concerning the scar and everything can be...and it can really turn out just fine.  Good luck with your situation.

[okisensei]

I understand your concerns about surgery, but think you should have it removed if that is what your doctor recommends.  My mother waited 5 years to have the surgery and it turned out to be a much more involved procedure because the cancer had spread to her lymph nodes by then.  Luckily, the surgeon was able to get the cancerous nodes out as well and, with RAI treatments, she was fine.

However, I also caution you to make sure you have your thyroid levels checked regularly once you undergo surgery and let your doctor know anytime you aren't feeling right.  My mother's cancer is now back after 13 years of being "clean" because her levels were not properly adjusted and she ended up with new growth on the small part of thyroid tissue the surgeon left in her.  She'll have surgery again in a few weeks and hope they got it all this time.  It is definitely worth getting it out early...even if it turns out not to be cancer, your peace of mind must be worth something to you.  Thyroid cancer is curable if treated early and properly and taking a small pill for the rest of your life is a small price to pay.

Good luck!

[kgett73]

[kgett73]

hi,
I am writing this mostly because i came back from my first appointment with an endo, and i am very confused, and angry, and scared. I had a thyroid ultrasound done in august, because of a fluke lump that was felt by my doc. It came back as having found multiple nodules on my thyroid, and also on my parathyroid. now at my appt yesterday with this endo doc he asked me how old i was i said 34 .. without much more question his reply was we'll do another ultrasound in six months and see if there is change.. my concern first is that they had given me a symptom check list to which almost all applied to me, he didn't even look at it , i know he didn't because  when i asked him if any of these symptoms would go away he asked " what symptoms". Now for the last ten years my doctor has always said that my thyroid looks enlarged, but my blood test always come back normal,although i know i don't feel right. my symptoms, heart palpatations , trembling, feel shacky ,heat intolerance, and cold intolerance , have trouble getting to sleep, and most recently having difficulty swallowing.. i feel like something is always stuck. family history.. my grama had her full thyroid removed a couple of years ago she had cancer. my aunt also the same thing.. now other types of cancer runs in my family.. Someone please give some advice...

[lkbjdyer]

I can really identify with all of your comments. kgett73 I had a very similar experience with an endocrinoligist. I went to the endo and he didn't even really listen to me. One of the first questions he asked was what medication I was taking, when I told him the beta blocker I was taking he said oh well that explains your symptoms goodbye. Thankfully my md said the endo really missed the boat so my md took it upon himself to try and figure things out.My test levels are always in the normal range but I have an enlarged thyroid and large nodules on both sides of my thyroid. The thyroid is now pushing on my esophagus, nerves ect. to a point my face is numb and it is difficult to eat ,breath, sleep ect. The thyroid/nodules are about 4 times the size they were 6 months ago and I am waiting for my second opinion and a biopsy. Some days I am not sure if things will ever be alright.  

[emma54]

I had 1/2 of my thyroid taken out in Aug 2007 but it was not cancer.  I will not have my thyroid level check until the end of Nov,  Are you taking any medication for your thyroid?

[barbara1013]

I had pappilary carcenoma- supposedly all blood tests were normal even though I felt like garbage for over a year. Had the whole thyroid removed, RAI, replacement med. Recovery was relatively quick, no recurrence. I learned it was safer to have the whole thing removed to lessen the risk of recurrence and you will have to take meds anyway. And don't worry about the med- name-brand Synthroid is only about 25.00 per month and even less when you buy 90 days at a time. If you start on a generic, it's like 10 or 11 per month. But you do need to keep having your levels checked because your body changes unexpectedly. That's where I am at right now- see "crash and burn"

[barbara1013]

kgett, see another doc. You don't need to feel "dismissed" by a doc when YOU  know there is something wrong. A doctor should never leave you feeling the way he did. I have been there, was ignored and made to feel like a hypochondriac, changed doctors and the first time I saw the new doc, (for a pap no less) he heard what I had to say and almost instantly found the lump that turned out to be cancer. It's your body- make them listen or go to someone else. Trust me, it's a hard lesson to learn but well worth it. Oh, and specialist tend to be that way- very high and mighty, better than everyone else.

[buffydarlene]

I was reading  comments on the total thyriodectomy and i had a few questions. I was told i had a nodule on my thyroid and i had a biopsy. The results came back as suspisious, so at this time they are recommending surgery (total thyoidectomy).I want another opinion but the doctor told me that would not change the results of the first biopsy (which was only suspisious). Should i go to another doctor and have another biopsy or go ahead and have the surgery? I have read so many bad things about the medications that is prescribed for life. I was wondering what is the best medication. Also how was the surgery? How long was the recovery?
I am really scared to be on a medication that has so many side effects for life.

[Sandbuggygirl]

I have a similar problem.  Had a nodual diagnosed 2 years ago that was about 2.2cm.  Went through 2 biopsy's, first one un-differentiated folliccular leision and second one with a diagnosis of Hoshimoto's.  All of my blood test results are always normal, eventhough I have had all of the symptoms of Hypothyroidism for 2-years, and my Doctor does not seem to care, as long as my tests are normal I am normal.  After my last biopsy he advised me that if the nodual grew any larger, I would be referred for surgery.  Well, had my Ultrasound today and it is larger, 2.8cm...his response "come back in 6 months".  Now I am a little concerned as he didn't seem to care it grew .6cm in 12 months and 6 months ago he told me if it grows any larger he would remove it?  The nodual has remained the same size for almost 2 years but now appears to of gotten larger.  Don't know if I should start getting a second opinon or call him up and ask him why his "opinion" had changed since I saw him in April.

[L777]

Reading all your posts feels like I am reading my story.. I am going to copy paste a post I made and if anyone can comment, I would be grateful!

OK long story I will try to cut to chase - I started an 10 lb per year weight gain about 10 years ago - at this time, I was in the gym everyday - I just dropped off - got tired.  I contributed the lack of energy and weight gain to my job change - from never sitting, to always sitting.  

My previous annual GYN doc said I had and enlarged thyroid - so I went to my primarty doc - he said that I would probably have to start working out 2X as hard to achieve same results- nothing important (to him I guess) -

I have progressivly gotten more tired, more depressed and gained more weight - one prev. doc put me on lexapro - kind of helped me for a little while during my mother illness.  She faught a battle with cancer and past in Jan. I am an only child (adult) with 3 of my own kids - so kind of pushed the fatigue to the side thinking that it was brought on by 3 years of horrible depression watching my mom go thru this stuff. My latest symptom has been hair loss - I used to have so much hair - BIG TEXAS Hair.. and my mom grabed my hair in December and just got a horrible look on her face and asked where my hair had gone.. kind of freaked me out..

I started putting these symptoms together and thought I was experiencing every hypothyroid symptom possible - my current GYN - said "time to figure this out!" even if my bloodwork was normal - we need to figure out why my thyroid is big - so he refered me to my present physician - who is wonderful - she listened and understood my frustration - primarily.. I have not mentioned yet - is that I am back n the gym since last October - averageing 15 days.. I boosted that up to 20 days in the gym every am at 530 - cardio for 45 min at 165 bpm.. then weight training.. I have lost....NO WEIGHT!..my best friend is my gym partner and she is a personal trainer - so I know we are doing every thing right.. I started going to work out at lunch with a sedentary friend - she lost 10 lbs in 2 weeks.. me, nothing and she does only 10 min cardio and poops out on me.. I am so frustrated..

Ok - almost there - my doc scheduled me for test - nuclear uptake and a sono - appears I have a multinodular goiter - 2 lesions are cold and 2 cm each - on each lobe - my ENT did  FNA biopsy - results are follicular - my options are to watch it - or remove it.. 20%chance of follicular cancer (as I mentioned my mom just died of cancer - so that is very concerning - different type - still the "C" word.).. My fear is that if I remove my thyroid that I will keep gaining weight.. my fear is it will get worse.. yea I feel tired - but am I 'realy' tired?.. I don't know anymore.. my fear of life without a thyroid has frozen me.  Does anyone think my thyroid issues are related to my madness - or should I just wait this thing out and keep up in the gym?  I have no idea what to do - the medical field says unless my bloodwork says my thyroid is low - they can not feel that it contributes to weight gain - yet it is clear I have a thyroid problem.. what is that supposed to mean?

HELP - any suggestions are welcome!

[buffydarlene]

Just to let everyone know...i had another biopsy and the results came back benign ! :)
No surgery for me. The doctors were ready to screw me up for life for no reason. Thats why it is good for a second opinion.

[serendipitynyc]

I'm a bit scared about a cancer diagnosis as well.  My thyroid is enlarged on only one side, has nodules, and is actively growing.  While I have a strong family history of hypothyroid, I have a strong family history of cancer as well.  In fact, my father, who is hypothyroid had Hodgkins lymphoma in his late 20's.  

2 years ago, at the same age where my father had cancer, I had a suspicious, prolonged painful and visible swelling in the left side of my neck that lasted about 10 days.  I also had a solid mass in the same side of my neck that I'd had for about 2 years.  I had the full cancer workup, including CAT scan, and core needle biopsy, and was fully ready for a cancer diagnosis back then.  The tests came back negative (the mass in my neck is solid) and the pain and swelling disappeared just as suddenly as they began.

Now, the half of my thyroid, the half opposite that where I had symptoms 2 years ago is enlarged and actively growing.  The blood panels are still normal, except for a low white blood cell count.  I have been prescribed prescription amphetamines (by a different doctor) because I have continuous fatigue that was interfering with my ability to remain awake at work.  

I have been referred to an endocrinologist and am a bit concerned about my canver risk.  Given my family history of cancer (spanning at least 4 generations, and multiple diagnoses in each generation)  there is no way that I cannot have at least a partial thyroidectomy if it is recommended.

@L777

I understand your frustrations with weight loss.  I too am having an impossible time shedding pounds.  I am 5'7" with a medium frame (and large chest) and can usually maintain a weight of about 150-153 with reasonable eating and gym time.  Lately my weight has climbed to 160-165 and will not budge, no matter my eating or workouts.  I actually challenged myelf to rollerblade over the summer (in addition to gym workouts), to the point where I was able to do 15 miles in an hour, including moderate hills.  Although my strength and cardio vascular abilities increased significantly, I did not lose an ounce.  And since the season ended, I've been packing on weight.  

My pants barely fit, and I looked at myself in the mirror the other day, and saw a big , jiggly gut.  To make matters worse, I am always tired, to the point where if I force myself to go to the gym on a bad day, I get a strange groggy sensation in my limbs... like I am sleepwalking.

[azimay]

I had a nodule in I noticed in 2003 - FNA was undiagnostic.  I waited until 2005 when I felt the nodule growing to see a doctor about it again.  My TSH was normal.  I had half of my thryoid removed and biopsied.  Unfortunately, mine was cancerous and I had the rest of my thryroid removed 23 days after the first half.  My younger sister had a nodule on her thyroid for years longer than I did.  Her FNA was also undiagnostic.  After my cancer, she had hers removed and it was not cancerous.  You just never know.  There are risks to having the surgery as it can affect your parathyroids.  Second opinions are essentials - but sometimes results stay undiagnostic and it becomes your choice.