The THYROID Thread

[jennz]

Originally Posted by nmmom95

Hi! I'm new here. I am having a partial thyroidectomy in a couple of weeks. I If it is found to be cancer, they are going back in to remove the other half. I have other health issues (kidney failure and an autoimmune), so the doctor thought this would be less traumatic for me. I'm really scared.

Thanks to mrsklamac for telling me about this board.

I'm guessing they're doing this to leave part of the thyroid in if at all possible. Having part of your thyroid is better than having none.

I had the same situation, inconclusive biopsy - they did a frozen cell during my surgery and would have removed the whole thing if it came back positive. The frozen cell biopsy gives them quick results while they are doing surgery. Are they not doing the frozen cell biopsy during your surgery? I thought that was protocol. Unfortunately it does not show the cancer 100% if the time, and so when they sent mine out they found that it was indeed cancer and I had to have a second surgery.

Originally Posted by luvmarypoppins

O.K. This might be a dumb question, but heah I plead thy ca newbie status, I am still learning I guess.

If I just had the sonogram (2nd one, since I had one in Aug. I think)

Would the sonogram give an accurate picture if the remnant is still there or since its been a year since the RAI next month would the sonogram show if the remnant was gone

and which is the better indicator, I am assuming the thyroglobulin with hopefully unmeasurable readings.

I havent heard from my endo, but I know she said last time, oh I didnt call you because I see you were coming in etc. I guess I should ask her how she disseminates information whether good or bad etc. I dont iknow whats worse, hearing bad news in person or over the phone if I ever had to deal with that again. I did both.

I don't know about the sonogram, I've never had one although see quite a few people mention them on this thread. I always have an uptake, where you take the radioactive iodine.

My endo always gets excited about the thyroglobulin so I'm guessing that the better indicator, but am not sure either. I'm not much help!

I would definitely ask to get a call with your results. So what if you're coming in soon? Waiting for results is hard! I'd rather know than keep waiting. Just my opinion.

[nmmom95]

Originally Posted by mrsklamc

It sounds like your case is very unique because of your other health issues. They did a biopsy and felt it was inconclusive?

I don't know about your other health issues, but if they didn't exist, I'd say go ahead and have the total thyroidectomy done.

They said the biopsy was suspicious and that it is cancer about 20% of the time. I would prefer it be taken all at once, but the surgeon wants to go this route because of my health issues.

Originally Posted by jennz

I'm guessing they're doing this to leave part of the thyroid in if at all possible. Having part of your thyroid is better than having none.

I had the same situation, inconclusive biopsy - they did a frozen cell during my surgery and would have removed the whole thing if it came back positive. The frozen cell biopsy gives them quick results while they are doing surgery. Are they not doing the frozen cell biopsy during your surgery? I thought that was protocol. Unfortunately it does not show the cancer 100% if the time, and so when they sent mine out they found that it was indeed cancer and I had to have a second surgery.

The surgeon said that they usually do the frozen cell biopsy during surgery and remove the entire thyroid, if necessary. I am going to be a little different, since I am on dialysis. I really don't want to do this twice, though.

[luvmarypoppins]

Originally Posted by nmmom95

Hi! I'm new here. I am having a partial thyroidectomy in a couple of weeks. I If it is found to be cancer, they are going back in to remove the other half. I have other health issues (kidney failure and an autoimmune), so the doctor thought this would be less traumatic for me. I'm really scared.

Thanks to mrsklamac for telling me about this board.

Just wanted to say welcome and wishing you all the best with your upcoming surgery.

[nmmom95]

Originally Posted by luvmarypoppins

Just wanted to say welcome and wishing you all the best with your upcoming surgery.

Thanks! I hope you get good results!

[luvmarypoppins]

Well today was my endo visit. Praise God I got such a good report.

She said, the sonogram was just great and the remnant was gone, so the RAI killed it all.

The thyroglobulin is undetectable and the TSH is about 0.1.

She is keeping me on the high level of synthroid for at least another year so she said "thats where we like to have it with all our thy ca pts". So its a little hyper me and maybe some heeart palpatations.I havent really noticed those that much.

She said she is sending the rad onc. an e mail and feels I dont need a 1 year scan. Hmm, I thought that was like mandatory or required? I didnt want to get into that with her as I think the rad. onc. has the final say, but here you have a cancer team in the whole hosp. system, the surgeon, rad. onc. and endo together etc. So she also mentioned about just getting the 2 thyrogen shots and getting a blood test. I dont know if that is another option or will be done in addition to the probable scan etc.

She also said that if there was a recurrence it would likely occur in the first year post op? Hmm, has anyone heard of that comment before? Even my surgeon never said that to me etc.

[mrsklamc]

I wonder if that just has to do with it being a rare variant? I'm so glad you got a good report!

[jennz]

Originally Posted by luvmarypoppins

Well today was my endo visit. Praise God I got such a good report.

She said, the sonogram was just great and the remnant was gone, so the RAI killed it all.

The thyroglobulin is undetectable and the TSH is about 0.1.

She is keeping me on the high level of synthroid for at least another year so she said "thats where we like to have it with all our thy ca pts". So its a little hyper me and maybe some heeart palpatations.I havent really noticed those that much.

She said she is sending the rad onc. an e mail and feels I dont need a 1 year scan. Hmm, I thought that was like mandatory or required? I didnt want to get into that with her as I think the rad. onc. has the final say, but here you have a cancer team in the whole hosp. system, the surgeon, rad. onc. and endo together etc. So she also mentioned about just getting the 2 thyrogen shots and getting a blood test. I dont know if that is another option or will be done in addition to the probable scan etc.

She also said that if there was a recurrence it would likely occur in the first year post op? Hmm, has anyone heard of that comment before? Even my surgeon never said that to me etc.

Great news! Thanks for the update!

I have never heard that about recurrence, I've always been told that it can come back any time.

I thought you get the thyrogen shots and then the scan, and the thyrogen is so you don't have to go off your meds. Maybe she means she'll do that and you don't have to go off of it?

Also, I know they like to keep cancer patients slightly hyper, and I've been there now for over 15 years. Your comment about heart palpitations scared me a little (sorry ). Just know that you should not be having those, if you do your meds need to come down a little. My TSH is always below .1. I do remember one time when my meds were being adjusted and I was hyper it felt like my heart was coming out of my chest...very scary!!

Okay I'm done with my overprotectiveness.

[Christine]

She said, the sonogram was just great and the remnant was gone, so the RAI killed it all.

The thyroglobulin is undetectable and the TSH is about 0.1.

GREAT news!

She is keeping me on the high level of synthroid for at least another year so she said "thats where we like to have it with all our thy ca pts". So its a little hyper me and maybe some heeart palpatations.I havent really noticed those that much.

That's pretty standard. If you find you get heart palps you may need to go on a beta blocker. They really really like thyca patients to be very suppressed and they often have to use a beta blocker to get that balance between suppression and not having your heart go nuts.

She said she is sending the rad onc. an e mail and feels I dont need a 1 year scan. Hmm, I thought that was like mandatory or required? I didnt want to get into that with her as I think the rad. onc. has the final say, but here you have a cancer team in the whole hosp. system, the surgeon, rad. onc. and endo together etc. So she also mentioned about just getting the 2 thyrogen shots and getting a blood test.

From what I am hearing, after you are deemed "clean" the new way to monitor you is with Thyrogen shots and then having your blood drawn at a specific point after the shot to check for your Tg. Tg is the most sensitive marker. They are finding that the need to give your the extra radiation as well as scan you is not really necessary anymore.

She also said that if there was a recurrence it would likely occur in the first year post op? Hmm, has anyone heard of that comment before? Even my surgeon never said that to me etc.

With a more aggressive form of thyroid cancer this would be true. This is actually also true with the more latent forms. Statiscally, your recurrence will *probably* show up sooner rather than later. However, it can recur at any time.

[mrsklamc]

I have noticed that my heart races during the night if I 'splurge' and have a pepsi in the evening.

[luvmarypoppins]

Bless you for all your insight and information christine (and OT) I hope all your appliance problems are getting under control.

Hmm, so if I get the 2 shots, I am wodering if I would have to still do the diet? Oh how I do not enjoy that diet!! With passover coming up I was thinking of snagging a box of matzoh for the diet since its easier to find around this time and I am not a big fan of oatmeal, at least that kind, cookies ok etc.

And with your comments about the scan and not needing the extra radiation, it got me thinking, I posted before about my rad onc. doing some kind of research about radiation and the scan etc. I think she was trying to see if a 2 day rad. precaution after the tracer rad. was sufficient etc. Hmm, hopefully she may have drawn the same conclusions. I know she has written a chapter in a thy ca book before etc. Well I ee her April 29, so I guess we will just see what she has to say. I think before she said, oh I will give you a 1 year scan and then decide what to do with you etc. Hmm, maybe she will change her mind?

Also I know it can come back at anytime, its always in the back of my mind. I am still trying to adjust and deal with that mentally etc. Its a fine line etc. I just dont want to be so overconfident etc. I am glad I have alot of faith because that really helps me etc.

[Christine]

Bless you for all your insight and information christine (and OT) I hope all your appliance problems are getting under control.

The appliances were delivered today. The fridge was a tad too tall (the dimensions Sears gave were INCORRECT) so my husband had to do a little cutting on the upper cabinet. It's always something.

Hmm, so if I get the 2 shots, I am wodering if I would have to still do the diet? Oh how I do not enjoy that diet!!

No diet required if you are doing the "stimulated" TG testing which is what they are calling it. The diet is only necessary if you are ingesting RAI.

And with your comments about the scan and not needing the extra radiation, it got me thinking, I posted before about my rad onc. doing some kind of research about radiation and the scan etc. I think she was trying to see if a 2 day rad. precaution after the tracer rad. was sufficient etc. Hmm, hopefully she may have drawn the same conclusions. I know she has written a chapter in a thy ca book before etc. Well I ee her April 29, so I guess we will just see what she has to say. I think before she said, oh I will give you a 1 year scan and then decide what to do with you etc. Hmm, maybe she will change her mind?

Well, the thinking is changing on the followup scans. Once they are comfortable with your uptake and pictures (or lack thereof) they are realizing that the thyroglobulin (Tg) is the more sensitive, indicative test.

[mrsklamc]

Just wondered..how long have you guys had to go on the LID for your follow up scans? I'm sure it varies by dr. but I'm just curious.

[Christine]

Originally Posted by mrsklamc

Just wondered..how long have you guys had to go on the LID for your follow up scans? I'm sure it varies by dr. but I'm just curious.

Most doctors will tell you to do it for 2 weeks.

The thyroid oncologist who is the LID's biggest supporter and really drove home that physicians should require this has said that if you are EXCELLENT and do the diet perfectly you only need to be on it for 7 days; however, he said that most patients make so many mistakes the first few days that he directs 2 weeks so that by the second week, you've got it down.

[luvmarypoppins]

O.K. I am not bragging, but I did the diet perfectly. My dh even told the hosp. dietician that I was obsessed. O.K. I must have called her like 7 times at least during the time before it started. I was actually suppose to meet her in person before the diet started but it didnt work out.

My rad. onc. uses nih, thyca and her own combined. I cant even drink city water, only distilled.

I of course would like to just have the 2 shots and just the blood test and no LID and scan. I have my appt. with the rad. onc. on april 29 so we will see what she says.

Micayla I knew I couldnt believe how long they made you go on the LID before the RAI and after too.

Also when I stayed overnight in the hosp. after the rai they brought me salad but it had roast beef from the deli on it (boards head). I didnt even think that was allowed. I want to ask the dietician about that this time. Maybe since it was my last day etc?

[mrsklamc]

It was a long 3 weeks. I was just thinking I would be proactive about planning my menu so I can think about it the next few months. What made it hard was the weekend I had planned to make all my meal plans was when the feeling of really being hypo hit me all at once. My DH was amazing, but it was still harder than it probably had to be.

I am a chocolate lover so the no-bake cookies with cocoa powder and unsalted PB were a lifesaver!