Doc wants the whole thyroid removed.....questions for you all

[TXMomOfFaith]

My nodule biopsy came back as atypical and they said they could not say if it was cancer or not. I found out  this week that my doctor wants the entire thyroid out, not just the left lobe where my nodule is. She said that  she doesn't want me to have to come back in a few months or in the future when another nodule was found and have to go through this again. I tend to agree with this since this has been an emotional nightmare. I meet with the surgeon tomorrow. So here are my questions........... For those of you who had surgery do you regret having the the whole thing taken out or do you regret not having it all out? When I wake up I won't have a thyroid so how soon will I be started on meds? Will there be a greater time needed to recover due too the doctor take the whole thing out? Will there be any side effects? How can expect to feel or look?
I appreciate any and all feedback, advice, tips and comments. The folks on this board have been so helpful so far and I am so thankful.

[Linda1068]

I too had a nodule on my left thyroid and was told I only needed the one side removed so the nodule could be further tested to rule out cancer. The surgery was on 5/1/08. Thank God it wasn't cancerous. I was never told to have the whole thyroid removed. I suggest getting more than 1 opinion. As for how you'll feel afterward. My own experience has been I wished I'd never done it. My scar looks hideous to me. It healed well, but it looks as though I had my throat sliced. I have an awful feeling of fullness in my throat that has not gone away. Since I only had partial thyroidectomy, my Endo put me on Synthroid, 25 mcg. Not sure if I really need it or not. I go back to Endo next month for 1st checkup since being on meds. Really, get more than 1 opinion if you can. You don't want to do something you will later regret.

[Linda1068]

One thing I forgot to mention. I did not get other opinions or see other specialists. The whole thing happened so fast and the docs scared me with what they were saying to me. Made me feel like if I didn't get the surgery done ASAP, I'd die. Honestly, I think doctors are too quick to resort to surgeries. That's not the only way to fix things. I should have prayed first.

[Linda1949]

I had my whole thyroid removed due to non cancerous nodules in both lobes 2006. I had hypercalciumia due to para-thyroids being out of whack also. I was totally miserable day and night. I had a very good surgeon who went the extra mile to save my one good remaining para-thyroid gland. My gland is producing pht so I'm very lucky. That can be a more touchy problem than just thyroid removal. The reverse can happen and you can become hypo-parathyroid which has another whole set of problems. Needless to say a very good surgeon is the #1 concern. As far as looks go I'm 59 and my scar is in a crease in my neck and hardly noticable. Just another wrinkle:-) I'm doing fine now feel human again and don't regret my surgery. I take levothyroxine daily. Check out the web sights for thyroid and para-thyroid very informative. Good luck to you.
Linda1949

[TXMomOfFaith]

I am actually seeing a 2nd doctor who I like much better and who actually explains things to me. My other endo was dry and didn't say much. He was also the doctor that went on vacation the day after he got my biopsy results and made me wait an additional 11 days until he got back to tell me the results. Thats a whole other story............anyway the new endo said that the biopsy showed atypical cells that were basically either pre-cancer or cancer. For this reason I am having the the thing removed. She said the thyroid is such a vascular gland that there is high probability of cancerouse cells moving from one side to the other lobe. This was her other reason for wanting the whole thing out. I support this since I don't want to have to worry about this ever again. The whole scar issue doesn't bother me one bit. I am 27 years old, short, overweight and not so pretty. A scar can't make it any worse. hahahaha :) When it comes to the issue of living or having a surgery scar........I pick the scar anyday.  
Does anyone know if I will be put on meds immediately after surgery?

[Linda1068]

The scar is not the problem for me. I have a scar from an appendectomy since I was 10. I am approaching 40, (ugh).  I just wish I would have had a more level head when I had to make decisions regarding the surgery and seeing other doctors and making it my responsibility to be better informed. I do pray that all goes well for you. Hope someone will be able to give you more reassurance through all of this.

[Thypatient]

My nodule biopsy came back as atypical and they said they could not say if it was cancer or not. I found out  this week that my doctor wants the entire thyroid out, not just the left lobe where my nodule is. She said that  she doesn't want me to have to come back in a few months or in the future when another nodule was found and have to go through this again. I tend to agree with this

~ I do too.

For those of you who had surgery do you regret having the the whole thing taken out or do you regret not having it all out?  

~ No, I don’t regret a thing.  I would have regretted it if I didn’t go along and had to get a second surgery or deal with cancer down the road - when I had the opportunity to do something when I did.

When I wake up I won't have a thyroid so how soon will I be started on meds?

~ I was started the next day.

Will there be a greater time needed to recover due too the doctor take the whole thing out?

~ I don’t think it matters.  But I think the longer we take time to rest and recover at home, the better.

Will there be any side effects?

~ I had side effects because the parathyroid glands were involved.  I agree with above that it’s a good idea to seek out info on these glands and how they can be affected by thyroid surgery.  I suggest a search for:  thyroid surgery + parathyroids

How can expect to feel or look?

~ My scar area was tender for a long while but was nothing that really bothered or interfered with my life.  The scar is noticeable for a while (you might get people wanting information about it and your experiences, that you’ll be happy to share on, knowing it might help someone).  It does fade over time.

Living without a thyroid has its ups and downs.  But if you ask me the downs are still better than the ‘what ifs.’

Best wishes.

[utahmomma]

I had to have the surgery twice because my cancer wasn't found on the original lobe until after I was in recovery.  My advice - get it all out at once.  *If* (god forbid) they do find cancer, you will have to have the entire thing removed anyway for treatment.

Just my $.02

Utahmomma
papillary carcinoma '03 (followup surgery '04)
recurrence and RAI '06 and probably '08
three sisters with papillary carcinoma, another with "atypical" (precancerous) nodules and daughter with "atypical" thyroid

[ras48]

I had a TT last November. The scar is there not bad considering that surgery for advanced throat cancer would be much worse. My sister also had thyroid cancer about 11/06. I do not want to frighten you. My surgery was pretty uneventful. Recovery was uncomplicated. After 2 knee replacements it was a walk in the park. My Dr. left it up to me to remove one lobe or all. He said he could do a path check while I was under. With my family history and the fact I hate surgery I elected to have it all removed any way. The lobe that had the problems was cancer free but the other lobe had a 3mm papillary cancer. If I had left that lobe in place The cancer would have gone undetected. So a little pill every morning and membership to the double smile club is a small price to pay for peace of mind. I just had 6 month check up and there is no evidence of cancer. So I feel much blessed. We are still trying to get THS in range but all in time. Just remember to let that Faith get you through. It works!!

[redheadaussie]

For those of you who had surgery do you regret having the the whole thing taken out or do you regret not having it all out?
   I had left thyroidectomy in May 07 due to suspicious nodules. Follicular adenoma with changes. In Nov 07 I noticed the right side swelling incredibly fast. I had Hashimoto's and the surgeon at the time said she left the right side because she felt I wouldn't need medication by letting it take over the left's job.  Rush job to get the right side out when the FNA showed Hurthle cells. I was NOT impressed, and she said she should have taken it out in May 07. I do regret it not being done all at once, but hindsight is a wonderful thing.

When I wake up I won't have a thyroid so how soon will I be started on meds?
   The very next morning after your surgery. Some doctors tend to wait a couple of weeks to let the natural thyroid levels wane off. I actually said to the nurse who gave it to me, "Here's to a long and happy relationship"

Will there be a greater time needed to recover due too the doctor take the whole thing out?
Recovery should be no different than any other time. First surgery and second surgery the approach to get to the thyroid is exactly the same, whether they take half or all makes no difference to the scar or recovery.

Will there be any side effects?
   You will have a sore neck for a little while, possibly a sore throat from where they put the intubation tube. I drank nice hot cups of tea and that really helped. It only lasts a few days. Not painful but annoying uncomfortable. It's a very easy surgery actually pain wise. I have had a ton of other surgeries and the two thyroid ones were really the best.

How can expect to feel or look?
    Tired, and possibly a little sad at having to go through the whole thing. It does hit you later once all the 'excitement' of it all has passed and you realise you are never going to be able to go without that magic little pill. But stay with us! You know full well how wonderful we are in supporting each other.

I personally think it is better to be safer than sorrier. Had the right side of mine not swelled so much from the Hashimoto's I could be dead now, as the cells in the nodule was just on the brink of about to escape, and Hurthle Cell carcinoma is not a nice way to go! (Not that ANY cancer is a nice way to go!) I just mean that to err on the side of caution is a lot better.

Good luck!

[helsurf]

hi TxMomOfFaith

i had my whole thyroid removed because of a suspicious 4cm nodule that turned out to be benign on final pathology but they also found a 2cm papillary carcinoma on the other side which would still be there if they hadn't taken the whole thing out, it was also unencapsulated and pretty close to spreading else where (which a recent scan shows that it might actually have done)

if they had only taken out the lobe with the suspicious nodule i would have been told it was completely benign and in the meantime this canerous nodule would have been happilly spreading elsewhere!

I'd get it all out, i'm so glad i did, going in for RAI next week and then hopefully the worst of all this will over,

at least then you'll have complete peace of mind, as for thyroid replacement, i was started on thyroxine 2 days post op, and then changed to T3 when cancer diagnosis confirmed,

i'm sure this won't be the case for you, but i think it's better to be safe than sorry

good luck and let us know what you decide to do :)

love Helen x x x

[TXMomOfFaith]

Thank you ladies. I meet with the ent doing my surgery today. My endo doc warned me that he doesn't like to remove the whole thing and that I may have to insist. After hearing some of yalls stories, I feel ready to do that.:)

[ras48]

Keep us informed as to how the appointment goes. Remember there are a lot of good people here for you. We have been there.  Regina

[BKbroiler]

42 yr. old male, lump found on thyroid 3 weeks ago. Tests came back suspicious and the specialist wants to go in, take half, test it, and if its cancer take it all. Truth is, I'm scared. Really don't want to take meds the rest of my life, don't care about the scar, and really don't want to have cancer of ANY kind.
Biggest worry is I'm in pretty good shape and wonder what life will be like with a pill controlling everything. Weight gain? Weight loss? Will I feel tired or lousy?
Any info from any of you will really help. Glad I found this thread in the Internet, for what it's worth it has really helped hearing from real people about this.
I like my Doc but since he does 7-10 of these procedures a week it seems like it's no big deal to him, but it is to me. I know half has to come out, but I really want to hang on to the other half of my thyroid.

[mulberrymom]

I had on large tumor 9 yrs ago, left untreated now I have 4. Fine needle biopsy neg but I have several other characteristics it could still be cancer. I have seen 4 specialists. 3 recommend surgery ASAP, 1 says closely monitor and the second there is a change it will be removed (all of it)They one thing they all agreed on was never have partial removed, it just leads to the rest being removed years later and you don't want to do that surgery twice. My recent specialist says if I was his mom or sister, have it all removed! Hope all is well. I enjoy reading everyones posts, they are really helping me. I am glad I am not alone. I have waited so long to have surgery because I am scared. I have 4 children and I am a fulltime student too!  I think I will decide to have it soon.  

[jeano22383]

I just came across your post.  My dr. recommended only taking my left lobe where my nodule was and I made the decision to have the entire thyroid removed.  This was last week.  I'm young, only 26, so cancer really wasn't likely.  The reality is, I found out yesterday that it was cancer.  I'm feel lucky that I made the decision I had because I would have had to have another surgery in a week or two.  I was already on synthroid because  have hypothyroidism, but to tell you the difference.. I'm only a little more tired since the surgery.  Not much of a difference.  I was in the hospital overnight, but had a great surgeon and no damage to my vocal chords or parathyroid glads.  my scar is ugly to me, but it was my first surgery, and I have no other scars...  the pain was bad, but tolerable.  For anyone in my shoes, or yours now, I would say taking my entire thyroid was the safe and right choice for me.. and you really just have to think to yourself... do you want to risk another surgery?  good luck and God bless.