Need advice- partial or total??

[deekay]

After the U/S, FNA etc. I was refered to a surgeon and he has given me the option of a TT or a Right Lobectomy.  I had follicular lesions on the right side that were inconclusive pathology and a simple cyst on the left.  Also, have Hashimoto's-  high antibodies.  The gland is burning out and I understand the right side has to go, but I don't know if it would be better to get the whole thing out and be done with any future problems.  Already on synthroid. Any advice would be appreciated.  I have 2 other autoimmune disorders and just want to have control over SOMETHING!  Thanks to anyone with input.  
donna

[ChitChatNine]

I am ditto to Utah's story but I still have the other half in but it doesn't work after surgery so is just a wasted entity sitting there with a small nodule. that we watch.  My biopsy during surgery was benign but two smaller areas found elsewhere in the gland were found.  

So - no guarantee other side will work after surgery . . . 20% do not

BTW, my orig nodules were atypical FNA and totally benign ... inside I truly wish they found the pap ca on the table and the other side out vs wondering about the other nodule but I'm ok with it and synthroid is doing well for me.

C~

[KJ5854]

I'll share my very recent experience.  I too was deciding six weeks ago whether to have a partial thyroidectomy or a total thyroidectomy (TT).  

Back in October, through an ultrasound (u/s) on my carotid artery they discovered some nodules on my thyroid.  One thing led to another and in early Dec. I was having an FNA on four nodules.  I was diagnosed with Hashimoto's from that FNA and they discovered one nodule on the right side had cells suspicious for cancer.  My surgeon (also my ENT) gave me the option of just removing the nodule or having the whole thyroid out.  However, he strongly recommended the TT.  

He said that if they went in and took the nodule out and discovered it was cancer, I'd have to go back for another surgery.  (Pathology while I was on the table didn't seem to be an option).  Also, I reasoned that I'd have to be on medicine anyway now for the rest of my life and with all those nodules on my isthmus and left side I'd have to be constantly getting u/s and FNA's on those and I'd always be thinking that maybe they were growing cancer.  I just want the whole thing out and this Tuesday that's what I'm doing!  

Best of luck in your decision.  Keep us posted.

[darksuns]

My surgeon did the pathology on the table. (side note: my FNA and 2 US's were completely normal.) Beforehand, we had definitely decided to take the whole right side out. However, I had a nodule on the left side, too. We decided that he would send the whole right side and the nodule from the left side to pathology while I was laying there on the table. If they both came back normal, then he'd stitch me up and that would be the end of it. If not, then they could still take the left side out.

Turned out that the one they originally thought was cancer, wasn't, but the nodule from the left side was!!!!

I had a TT right there. I had some probs with more soreness in the muscles after surgery but it was just because I was on the table for so long!!

My feeling is, if they can do some pathology work on the table then go for it. If they can not, go for the TT. Better safe than sorry.......   :)

[mom_in_training]

I am new to this whole thyroid thing but will say that my daughters surgeon will give us no ther option but to remove her whole thyroid due to her having a reacurring mass with cysts. She had surgery when she was 13 in 1999 to remove a large mass and cysts (Benign) and now has another mass thats doubled in size. She has never been on any meds even after her surgery in 1999 (Partial thyroidectomy) and has not had any ongoing health issues due to it until now since the other mass has developed.  It is a tough decision. There are no guarantees if another growth will appear sometime down the road. Regardless of what you decide, I too wish you luck. My daughter will more then likely be scheduled for surgery on the 7th or 8th of February.

[bluejaymom]

I too have a follicular lesion that I think needs to come out. It's 5.9 cm around and grew where they removed the left side last year due to papillary cancer. I wish they'd taken the whole thing then. My endo said, let's get it out and quit the FNA's, ultrasounds and waiting for it to do something. So, I'm seeing my surgeon this week and scheduling a TT.  

[katekos]

I have had Hashi. for a number of years, then this past year u/s showed nodules in both lobes but one lobe had larger than other, FNA showed some Hurthle cells which can be "normal" with Hashi., Endo. decided to just keep an eye on it with frequent u/s, u/s 5 months later showed same nodule had doubled in size.  Went to the surgeon and discussed with him, read lots on the internet too.  I felt the best thing for me was to remove the whole thing - I've been on thyroid meds anyway so that wasn't going to change anything, I didn't want to have another surgery later when the other nodules would probably grow, and even though they said Hurthle cells are common with Hashi. they aren't common for anyone else so why would it be OK for them to be in my body.  So I had TT 3 weeks ago.
It's a hard decision to make but it has to be something you are comfortable with and feel is right for you!  Best of luck!

[utahmomma]

I had a partial and they didn't find the papillary carcinoma until I was in the recovery room.  I opted to go back a year later and get the total - after the rest of my family also had papillary carcinoma.  I'm glad I did because three years later I had a recurrence and needed to have RAI - which I couldn't have had if I had part of my thyroid left.

Personally, I think that if it is suspicious it's worth just getting the entire thing out.  Too often we need RAI followup.

Just my experience.

Utah
papillary carcinoma '03

[deekay]

So, you had a total?  Is it best to leave what you can even if it's burning out?  I'm afraid something will grow on the left side down the road and have to go back through the scar and take the rest.  Just trying to do what is best.  Hard to decide.... donna

[pep88]

Can they not do pathology while you are on the table?  FNA's notoriously miss the part that may be cancerous.  If it were me, I'd have them do the pathology there in the operating room and only have all of it removed if it's necessary.  But, I also must tell you that my issue had nothing to do with hashimotos or any of the other conditions you mention.  Just had a couple of nodules on the CT and it turned out to be cancer even after the FNA came back only 'suspicious'.  And the path in the operating room was the only real confimration.   I'm sure others can help more with the hashi's and such.  Good luck!