Surgery instead of RAI

[mags59]

Well, went to Endo yesterday, and now he's changed his mind since seeing my latest uptake scan.  Originally going to go with RAI, but now he's recommending surgery.  The nodule on the left lobe has gotten significantly larger and right lobe is completely dead.  He said he'd have to give me such a large dose of RAI to kill the nodule, and he's uncomfortable with that.  With the surgery, he says that they can also look at the right side to make sure there's nothing "suspicious" there.  It's really scaring me since I really, really didn't want to undergo surgery.  Any info or advice from those of you out there who have gone through the same, I'd really appreciate it.

[Cherylm203]

Hi mags!
This will also be my second thyroid surgery and I have to say my c-section experience I had in January was much worst because on top of everything else I was AWAKE!!!

If you're nervous,  I would ask for that "wonder shot" that someone else on this thread spoke about.... literally- they could of wheeled me off the building and I could of cared less!! LOL

You literally close your eyes and open them in the recovery room... the recovery was not bad either and I imagine 12 yrs later, the surgery is probably a little easier!

[utahmomma]

Hey!  I liked the surgery so much that I had it twice!  Then I convinced everyone in my family to try it too!  LOL  

Okay, I had it twice but it wasn't because I was bored or anything.   All in all, I've had 9 surgeries in my life.  The two for thyroid were THE EASIEST I've ever been through.  *Much* easier than laparoscopic abdominal surgeries.

I was terrified the first time but it really was quite easy.  I had both of my surgeries on a Thursday and was back to work the following Mondays.

You can't see the scar (check out my profile page).

Utahmomma
papillary carcinoma '03 (and followup surgery '04)
recurrence and RAI '06 and probably '08
three sisters with papillary carcinoma (one with three recurrences)
daughter with precancerous thyroid
sister with precancerous thyroid
    -    yes, I think we bought our surgeon a vacation home in France.  :-)

[yancy1966]

I had TT in January and I was scared to death...I too had the prep nurse give me 'something' for my anxiety and that really helped. The surgery went really well. Recovery not so bad, the thing I couldn't stand was that piece of sticky tape they put over the incision, it drove me nuts, itchy as hell. Had my dr take it off after 5 days...then I felt great. But because it was the neck and it is a very weird place to be under the knife. Nothing to do to avoid the creepiness. I walked around with scrarfs for a few months just because I felt so vulnerable.
Now in July, people can't even find my scar, except for a little pink spot at the end. I just wanted it out. My dr couldn't be positive if it was cancer through the FNA, I was glad i got it out since they did find cancer. Good luck...it'll be fine

[Ash7734]

Thanks for the letter about your good friend choosing surgery over RAI. It is helping to ease my anxiety about it. I have a 10 cm goiter and I am euthyroid. There is no cancer as far as they can tell. It's just so big that most of my Dr.s say they would get it taken out. The only symptoms I have are tightness in my neck and when I raise my arm or sleep on my side it's uncomfortable. This will be my first surgery and I am scared of the unknown... It does help though that my OB/GYN had thyroid surgery and she says its an easy operation and not to worry.

Thanks,

Ashlee

[mags59]

Thanks so much for your comments.  They ease my mind.  I'm so glad you guys are here to talk to and get answers from. I don't know what I'd do without you!

[pep88]

I think it's truely bizarre that until you have a thyroid problem, you usually don't even know where it's located in your body or what it's function is!  I was vaguely aware of what a thyroid did, but I can't say that I knew for sure that it was located in my neck before all this...

After I found out I had a problem, people came out of the WOODWORK, literally, telling me their thyroid problems.  Neighbors, girlfriends, employees... Of the 6 houses on my side of our street, the three closest to me are on replacement meds.  The others I have not had the opportunity to speak with them about it and I may not.  So, based on my experience, MOST people are on replacement meds of some sort...  But most told me that they were taking replacement but didn't have a clue past that.  Almost all had no clue what a TSH was, let alone what theirs was.  And absolutely NO CLUE what T3 or T4 are.  Most didn't even know the name of the med they took ON A DAILY BASIS!  To me this is so SHOCKING! :-O  

Maybe it's because I was never dx'd hypothyroid before my nodules were found.  And cancer tends to jolt one into some further investigation... BUT, it would seem to me that if SO MANY are effected by this one little gland, more would be known and it would be more heavily publicized...  My though for the day...

[Linda1068]

I just read what Shari wrote. I must say, it seems like thyroid removal surgery is just too common. I had never even heard of it until  this past January when a nodule was found. I never had any known problems before with my thyroid and I only knew of maybe 2 people who took thyroid meds.

[Shari4]

Hey, Maggie!

You have helped me out so much this past week, and now I have the opportunity to hopefully ease YOUR mind a bit.  One of my dear friends had a TT in May.  As soon as she found out she had nodules, she went to a surgeon.  She chose surgery over the RAI!!   When she told me she wanted the WHOLE THING OUT, I thought she was crazy!!!  

I saw her less than four weeks after her surgery.  My first question to her was, "I thought you had the TT last month (which was silly, because I talked to her when she was in the hospital)" - I asked her, "How on earth did they do it without leaving a scar"???  

She told me her Surgeon made her put her chin to her chest (like she was nodding her head), and they did find the slightest line (we all have it), and that's where he made his mark.  This was an incredible job.  You REALLY can't see it!  She also told me, "going to the dentist is worse than having a TT".  

She said she made the right decision, because she doesn't have to worry about the nodules ever again, which, by the way, were 100% BENIGN!!!  

Another friend is having half of her Thyroid removed on July 30th!  She is not hyper or hypo, but she has a huge mass on hers.  She's not scared a bit - mainly because she's an Operating Room Nurse and assists in Thyroidectomies every day!  She said people are afraid of the "unkown", and THIS surgery is easier than a tonsillectomy!

I hope this helps a little, and keep us posted!!!!!

Hugs!

Shari

[mags59]

That's funny about the wrinkle lines!  I'll be 49 on Saturday and, believe it or not,  I don't have any lines or wrinkles on my neck either (must be good genes).  I wonder if they'll say the same thing to me!  I hope I have as good an experience as you did. Just want to feel healthy again (if that's at all possible with thyroid disease), at least as healthy as I can.

Thanks again!

[Linda1068]

I know exactly how you feel about "THE NECK". Don't want to type the things I thought about.  I was told by the surgeon, Endo, and my PCP , "Don't worry, the scar won't be visible. It'll look like one of the wrinkle lines in your neck". Well, excuse me, although I will be 40 yrs old in 2 months, I don't have any wrinkle lines in my neck, so my scar is quite visible. Oh well. Life goes on.  
I feel for you and what you are going through.  Just a little note- when I went to the hospital that morning to get the surgery, I still wanted to just turn around and go back home.  I didn't want to go wheeling into that operating room, but as soon as the nurse gave me some "oh I don't know what it was" in my I.V. while I was still in prep room, I was out like a light within 1 minute. Next thing I knew I was in the recovery room.

[mags59]

Thanks for the responses.  My nodule is hot, but I guess the RAI wouldn't work as well because it wouldn't be taken up by the dead side of the thyroid.  I have hyperT symptoms pretty badly, and want to feel better, but I guess it's normal to be apprehensive about any surgery (it's just that its my neck and for some reason, that creeps me out!).  

Thanks again, your answers definitely made me feel much better about it, though.

[treimbol]

Many on here will tell you that thyroid surgery is the easiest one they have been through---I hope UTAH chimes in here :)  I had my TT in May, and though I was scared to death, in hindsight, it was a pretty easy procedure and quick recovery. (much easier than childbirth!!)  Do find the BEST surgeon you can to eliminate the possibility of vocal cord or parathyroid damage!  Look for a surgeon who SPECIFICALLY does thyroid surgeries OFTEN (at least 1-2 a week!)  Good luck!

[Linda1068]

I had a nodule on the left lobe, though my right lobe is fine and functioning.  I don't even remember a doc telling me that RAI could kill the nodule. Was your nodule cold or hot? Was that the reason for the uptake and scan? My nodule was cold. since my TSH was on the low side, 0.6 which was just in range. I had to have a biopsy of the nodule.
I was recommended to have surgery because cancer could not be ruled out. I dreaded to have surgery. I cried about almost everyday for 2 1/2 months. I even cried in front of the nurses in the hospital when they were prepping me.   If your doc tells you that you should get the surgery, then do it.  I survived the surgery and you will too.