I am scheduled for a partial thyroidectomy on the 19th for a suspicious finding from a FNAB.
Ultrasound results of 07/06: There is a 3.7 cm nodule in the right lobe and a 2.1 cm nodule on the isthmus. These were not present on an ultrasound done 02/05.
FNA results: Follicular lesion The specimens conatain microfollicles and scant colloid. A follicular neoplasm could not be ruled out. Clinical correlation is advised.
Therefore the frozen section surgery. I understand all this, but in reading the ultra sound reports I found that my left lobe has increased in length from 4.8 cm in length and 2 cm in AP thickness in 2/05 to 12.7 cm in length and 2 cm in AP thickness. That is almost 8 cm or three inches!
I go back for a pre-op appt on Wed the 13th. Should I ask about this? Especially since I have been on synthroid since 03/05 shouldn't my thyroid be shrinking instead of enlarging? And finally since my left lobe seems to be growing, should I just ask for a total thyroidectomy even if the results are benign?
frozen section does NOT distinguish follicular cancer from a benign lesion -- this is only known the next day. In contrast, papillary and medullary cancer can be diagnosed on frozen but from what you state this is not what the concern is.
I think 12.7cm is a typo -- that is unlikely
A total thyroidectomy is not unreasonable -- you would be dependent on synthroid and the surgical risk increases slightly, but it eliminates a second surgery if the R or isthmus is cancer and eliminates long-term thyroid nodule surveillance.
I agree in asking for a total and you are probably right when you said your thyroid should be shrinking instead of getting bigger (being on the synthroid) I would bring it up to the dr. Best of luck to you.
Ceegee -- definitely ask for clarification as to why a total thyroidectomy (TT) isn't being done. I had a TT a little over a month ago due to a substernal goiter (thyroid gland enlargement). With the enlargement you're seeing from your test results, has your doctor said you have a goiter? Are you seeing any enlargement in your neck? My left lobe was 9cm and my right 8cm and the doctor had problems removing mine, because it was growing downward into my chest cavity instead of outward on my neck. With the size of your left lobe, you should either be seeing a very noticable swelling of your neck OR not much enlargement at all and significant lobe growth, which according to my ENT indicates a possible substernal goiter. Are you having problems breathing or feeling like you're suffocating or choking? Those are definite symptoms for a goiter.
I was told by my ENT that thyroid medication rarely shrinks the size of a goiter, but it IS supposed to greatly slow the growth. The fact that yours has grown so much in one year and the sheer size of it now should indicate the need for a TT and I'm very surprised only a partial was recommended. In addition, my ENT told me that it's often more difficult to regulate synthroid medication to optimal levels when only a partial is done....he very much recommends a total over a partial, if it is at all warranted, which yours is in my opinion.
Regarding the nodules on your thyroid, I had that also and it was benign, as are most nodules. Also, it might help for you to know that the surgery really is a piece of cake. I was terrified, but it went so well I was up in a chair and joking with my family members four hours after surgery.
I was diagnosed with a multinodular goiter close to 5 years ago and have gone through repeated ultrasounds, uptake scans and several biopsies. Most recently I was asked to go through the biopsy procedure again because of 2 suspicious nodules. I must admit that the ultrasounds and uptake scans are apiece of cake but the biopsies have been painful in the past and did not give any clear evidence one way or another as to benign or malignant. Therefore, I chose to have a total thyroidectomy. I just recently underwent the procedure and it was not a problem at all. I was very anxious about the procedure but I was up and out of bed by that evening. Other than some soreness from the position they had to put my neck in everything went well. Tylenol was all I needed for pain and now I am on Synthroid for the long haul but I feel that is such a low cost to pay and now I know for sure that my thyroid was cancer free
To make a long story short. I would definitely recommend a total removal since you do have nodules. With a partial there is no guarantee that they might have to go back in a later time and remove it anyway. I would go through the procedure one time and be done with it.
It was the best decision I ever made. No more scans or biopsies and I have piece of mind knowing that my thyroid was cancer free.
Thanks for all your responses. All my adult life I've been told by doctors who did a physical exam that my thyroid was large, but until routine bloodwork last year all my thyroid levels were normal.
The ultrasound on in Feb of 2005 was the first one I ever had, so when the one this July showed so much growth on the left lobe it surprised me.
The surgeon upon physical exam was suprised the lesions were on the right lobe and the isthmus, since the left lobe felt so much bigger to him.
Right now only a partial is scheduled and if the frozen section is malignant he plans on taking it all out. He did say though if it looks 'funny' he may take it all out anyway. He said the only reason not to would be to protect the parathyroid glands.
I don't think that my neck sticks out so that anyone notices so it must go down like yours, Intrique. What did you call it? A substernal goiter? I don't have trouble breathing, but I do feel a fullness in my throat, and I do have trouble swallowing if there isn't liquid involved, but not so much that it stops me from eating. : )
Anyway thank you all for your replies, I will ask on Wed at my pre-op appt what would be the advantage of not taking it all out.
I just had TT on Aug 31 for papillary cancer. My thyroid and the growth itself were pretty large and doc said it "gave him a run for his money". If all this is true, I would make sure to ask for TT not partial - and like doc said, it would certainly avoid having to continue watching nodule - and most likely, end up having to have a second surgery. I agree with lake lover as well - make sure your surgeon is experienced. Mine does about 150 of these a year - thought not all for cancer. I was very impressed with the referrals I got and was very comfortable in my inital visit with him - he did not mind at all that I had a list of things to ask and discuss. Knowledge is power....remember that - it certainly does help when you are "in the know".
Good luck to you,
Yes, it's called a substernal goiter....a goiter that grows downward instead of outward. The reason why the doctor questioned the size of your left lobe is that 12.7cm is extremely large and one that size would definitely cause significant breathing/swallowing problems. Even at 9cm/8cm, I struggled terribly. Could you look at your ultrasound results and confirm the size for us? If it truly is that large and you're experiencing problems swallowing and feel a fullness in your throat, I just can't fathom how the doctor could feel justified not doing a TT -- goiters rarely stop growing (as evidenced by yours just this past year) and, if he doesn't remove it now, he'll have to at some point.
Your doctor's statement about not removing it all due to the parathyroids sounds like something an inexperienced doctor would say and that's why the other poster asked how experienced your surgeon is. Is he/she an ENT with significant experience in thyroid removal? If not, run don't walk to an experienced thyroid ENT. Also as the poster said, we have four parathyroids, you only need one, and the chances of parathyroid damage actually increases as a goiter grows larger because removal becomes more difficult, especially with a substernal. I lost two of my parathyroids due to the struggle of removing my goiter, but my other two are now working fine. Not doing a TT based solely on the reasoning of preserving the parathyroid isn't logical, especially when a patient is experiencing swallowing problems from a grossly enlarged thyroid lobe.
I'm rambling here, haha.....please do let us know what the surgeon says after your appointment! :-)
I do appreciate all of your comments. I think my surgeon is experienced. He was recommended by my endo, and is with the same group of surgeons who did my breast lumpectomy. He drew me pictures and told me everything that could go wrong. I think he was leaning towards a total, but I looked at him like a scared kitten, so he said he didn't have to take it all out, but that it might have to all come out at a later date. He also mentioned then that the only reason to not take it out would be to preserve the parathyroids, not that it would automatically damage them but it might.
It was after that visit that I looked at the ultra sound reports myself, and yes the ultra sound result does say 12.7 cm. I don't know if that is what they meant to type, but that is what it says. I will check that out on Wed too. The surgeon commented about the left lobe being so big and was suprised that the legions were on the right.
I will ask for a total at my pre-op, as Charley said, "knowledge is power".
I just got back from my pre-op. I didn't see my surgeon as he is not in this week, but I did see the resident who works with him. The resident told me I couldn't get a more experienced dr with thyroidectomies in this area. He said my surgeon performs more than any other surgeon in the area and that he keeps up on all the new practices and such. He said I should feel very confident in his hands.
As for the 12.7 cm. The resident said that was correct and that my surgeon will talk to me Tuesday before the surgery and that together we can decide on a total if that is best in my case. He seemed to think that the surgeon would not have a problem taking it all with the growth factor considered but he didn't want to speak for him.
Again thanks for all your support and suggestions, I felt very prepared for my appointment and felt I asked pertinent questions.
I also feel better about the surgery now.
So glad that you feel comfortable and know that you will have an experienced surgeon. I know how much more comfortable I felt after asking questions and wanting to know the #'s regarding his surgeries and complications. Knowledge is power - and you now have that relief! Good luck to you - let us know how it goes!!!
Hi. This is my first time on this site. I am going for a full throid surgery in October. I have a substernal goiter. My doctor has told me that they will have to open me up through my chest cavity. I have read alot of your questions and answers and haven't came across anyone having open chest surgery for this. Has anyone had this done?
Had the TT on Tuesday. Everything went well, the surgeon said it was a big big mess so he just took it all out. Since he did take it all out he didn't do a frozen section in surgery he just sent it all to pathology. He said he didn't think it was cancerous, but will get the results back tomorrow, Friday.
I feel pretty good, I don't have much of a voice and I have a dull headache, maybe from the anesthesia, but other than that I feel better than I thought I would.
Just had partial thyroidectomy myself. Complex cyst on left lobe. Had burping and sore lump in throat feeling for months but the surgery has seemed to fix this right away. I think you made the right decision since you had goiter on both sides. Glad your surgery went well. I am happy to have my surgery done.
calo, how many nodules, what size, and are they on one side or both? I had 2 large >1 inch benign nodules on same left side and had left side removed because I had a family history of thyroid cancer and didnt want them to develop down the road either. Tough gray-area decisions that the docs wont make for you.
Ok, I have been reading on your comments about thyroid surgery. I just had a biopsy done, it was painful but no cancer. I am very concerned that these nodules will develope into something some day down the road. That is why I think the complete removal is a wise option. The Dr. said either surgery or radioiodine is my two options.
I need informed help to make a choice. It has been 3yrs since I had my first does of radioiodine which he thought would do the trick then and didn't. Three years later, loads of med. changes and blood tests and I am still hyperthyroid. With the nodules showing up it just freaked me out, plus I have a lot of family history of cancer. I am worried that down the road I will have to repeat the biopsys, etc. I am leaning towards the removal just to be done with the guessing game. Any suggestions??
m300, thanks for responding to me.
My noduels were very small but I do not remember the exact size.
I am just terrified that more will develope in the future and have to go through this whole process again. The biopsy was not something I want to experience again as you probably know.
I have cancer in the family but not in the thyroid, stomach and lung cancers. The timing is horrible because of loosing our health ins. by the end of Dec. too.
By the way, how soon did you get your surgery? My Dr says since I have been off tapazole for over 6wks that I will have to get my blood levels up again before we could opt for surgery. That pushes Nov and is getting in a time crunch for me.
Did you habe any problems from the operation? How long was the recovery time?
Calo, we took a watch and wait approach for 12 months to see if my 2 nodules on the left side would change in size while monitoring TSH, T4, T3, as well as repeat ultrasounds. I was within the normal limits for all blood tests throughout and size didnt change much. I made my decision based on throat discomfort and family thyroid cancer history (even though biospy was benign). I saw it more of a now or later type decision, and sooner was probably better for me. It was a tough decision.
I had the surgery 7 days ago and I am ready to go back to work now. My neck was very stiff for the first few days but it slowly got better each day. I was kept in the hospital 1 night and they let me go home the next morning. My lump in throat feeling and sore neck were gone almost immediately so I am happy to have done. Plus I dont have to worry about the nodule become malignant or growing. I do have to watch out for hypo-thyroid symptoms however and will have a blood test next month and for several months thereafter to check TSH, T4, T3. With partial thyroidectomy some folks become hypo and need synthroid for the rest of their lives and some dont. I hope I am part of the group that doesnt as the remaining thyroid may be enough to supplement the function. If I need small dosage of synthroid, then no big deal either. I know many many people who take 1 a day.
Feel free to ask anymore questions. So many people have helped me prior to my surgery and answering my pre-surgery decision questions. I wish you the best.
My surgery was just this Sept, actually two weeks ago. I think I have recovered, I am not back to my normal self, but I function, go to work do what I have to do at home, and I pulled off those gross steri-strips last night and my throat didn't pop open : ).
what dosage of synthroid did the dr. put you on and do you think you may have trouble regulating and finding the right level over the next few months? I hear it takes about 4 weeks to kick in once you change a dosage level.
How did the radioactive material treatment go after post-op? How does that work?
I was just switched today from 88mcg of synthroid to 75mcg of cytomel in preparation for the RAI. I am really not too sure if I am getting the small dose for the scan, or the larger dose for ablation. I will know more when I go to the radiation oncologist.
I think I will have to wait until the RAI stuff is done and over with before I will get my regular medicine regulated.
Had a TT in May and had a large dose of the RAI on Sept. 7th. First had full body scan on the 6th, which showed something in my neck that didn't belong (doctor said it could have been a lymph gland with cancer cell but really no way for them to tell) as well as some remaining thyroid tissue, so needed the larger dosage of the I-131. By the 14th I was back to work.
Anyway, I did this as an outpatient. You need to drink a lot of water to get the RAI out of your body. Day 1 thru 3, I felt nothing. Day 4 and 5 had some jaw pain and some swelling in my face but both were gone by day 6. About 1 1/2 weeks later, I started getting a salty taste in my mouth like I ate a tablespoon of salt and still have that taste but not as severe. Doctor told me to stick to a bland diet and it would go away soon.
This treatment was more of a problem to me emotionally. Not liking the idea of taking a radioactive pill and becoming radioactive. Paranoid about affecting others. I think a lot of my feelings came from reading articles or what others have said on the internet. My doctor said that if I followed the guidelines, I wouldn't affect others, so that's what I did. As far as taking the RAI, it's been the post op treatment for many years now and a very successful treatment at that.
Started taking synthroid (I was taking 25mcg cytomel from right after my surgery until 2 weeks before my RAI. Originaly they had me taking 50mcg, but caused heart palpitations so I went down to 25mcg and felt better. Goes to show how everyone is different since my doctor said that most people take 50 - 75 mcg of cytomel in order to feel well). So far they had to increase the synthroid dosage from 100mcg to 125mcg due to my feeling weak, although I'm not feeling sleepy, just weak feeling in my arms and legs which starts around 2pm each day. Waiting for results from the blood test to see if I need more.
Thanks for the informative post. Where you able to go back home to your family after the larger dose? All I know is from what I have read on the internet and everyone's experience seems different, from isolation in the hospital to home isolation, to just being careful around small children and pregnant women. I am curious to see what precautions my rad/onc will give me.
Since I have been on the cytomel I feel a lot better than when I was on the synthroid. I am not looking forward to being off all meds for two weeks, but then again that is going by what I've read, and to date all my experiences have been better than what I have read, I guess maybe people who have an easy time don't post.
I was on cytomel prior to the RAI and felt fine for the 2 weeks off of it. I think everyone is different but hopefully you'll be fine off of it too. Felt fine on cytomel except for some heart palpitations. It's now that I'm on the synthroid that I'm not feeling as well. Feel like a ragdoll. My endo upped my synthroid from 100mcg to 125mcg and not it's wait and see. I'll find out the results of my blood test today or tomorrow to see if I need even more.
As far as the RAI. I did this as an outpatient. Since my boyfriend has an apt. not to far away from my home, I stayed there for the first 2 days and he stayed at my house with my boys. Honestly, my doctor said that this was not necessary, but it made it easier for me, since I was so paranoid about this whole thing and since it was an option. I could have just as well stayed in my bedroom at home. Precautions for the first 2 days were to flush the toilet 2-3 times, wear gloves when preparing food (I wore the gloves whenever I left the bedroom) and keep your garbage separate (and put it in a bag for 2 months in your garage or shed before throwing out to the garbage collectors, as a precaution), stay 6 feet away from visitors, limiting visits to 15 mins at a time and stay away from pregnant women and children, if possible. My doctor said that some women have to care for their children and then limit their time with them and wear the gloves as a precaution.
As for the internet, I read everything on their too and my doctor said that a lot of what you read is old news and not necessarily true, so best to listen to your doctor. As per my doctor a majority of the RAI leaves your body in the first 2 days (remember to drink lots of water),so just take the precautions and all will be fine.
I had a 2.4cm cold complex nodule on my left lobe of my thyroid. The FNA came back non-diganostic non-malignant. My doctor performed a partial thyroidectomy removing my left side on 10/13/10. I also have several nodules on the isthmus and ride side that are all above 7mm and some are hypoechoic. After he removed the the left lobe he told me that it was "very sticky" and he had to "scrape" it off. He said they would send it out for biopsy and then go from there. The biopsy result came back just like the FNA result. What does that mean for me? He was very worried about the stickiness. I haven't had any labs done yet. I go back to see him in a couple of days. Any help or advise would be great. I have no family history of thyroid problems. This is all new to me.
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