The THYROID Thread

[luvmarypoppins]

Singing Mom - Yes I do love my endo. I guess I am frustrated because she probably is doing her best but she only has one other person who has the rare variant I have and thats a guy, whom this is usually seen in, not women. So I guess with me its kind of trial and error and stay on course and see what happens, so I think she is doing well with me, but guess I have to deal with the side effects because she doesnt want to mess with my synthroid any more right now.

Jenn - I so hear you on the eye stuff. I should really get something done. It will be a while until all the stuff gets straightened out with my ds. Hopefully this will be in the spring or sooner when he will only be able to drive to school or work. Good luck with the house hunting. I still get queasy thinking about the surgery. My endo said the eye surgeon is good. She seems nice but thinking of having my face pulled back is a little freaking me out right now. Good luck with the house hunting.

JKM - glad you can get the vitamin issue straightened out

Shannon - I am so sorry you are having all the para thyroid issues. I know its frustrating. I too had my vein severed during surgery. 1st surgery was 6 hours, 2nd was 2 hours and they couldnt find the bleeding, then sent me up to a room and then I almost died and had 15 minutes to live. That was another surgeon and I was his lst operation at the hospital. He just moved here. That was 3 hours and 2 days in a coma. God is Good! I am glad I am still here too. I have to have my dh help we with the grocery shopping. I am just too tired from it. My L arm really doesnt work well either so I need all the help I can get . Wishing you all the best

Micayla - hope you are doing well too. Do you still have your blog?

Christine - guess your ds is thinking of colleges?

GranFan - glad your dd was able to get the thyrogen. First time I had it I got the nausea and headache. The 2nd time I had the shots for the l year follow up scan I was fine with a slight headache. Much better.

Pembo - so glad to hear your niece is doing well. That is great news! She went through a lot with that leak for sure.

I got my blood test. Havent heard from the gp but that is normal with him. I am not holding my breath. Thank God I have my endo. I want to schedule the bone scan but dh is off again for a weeks trip tomm. I am getting weary of this. Ds 3 is loving nursing school. Friday he gets to go to the hospital for the lst time. Not the one he volunteered at. So he is happy.

 

[Granfan]

Luvmarypoppins:
I know you are getting weary of so many dr's visits and procedures. I will be praying for your strength to endure them until you are better.
Daughter was sick with nausea and headache but not too bad the first day of the thyrogen but after the rai pills yeaterday she has been pretty bad today. Hoping tomorrow will be better when she will have the scans.

 

[luvmarypoppins]

Granfan - wishing your dd all the best today with her scans. Does she get the results right away? Do you know what her dose was? I know that you said rai pills. Just curious if she got more than 1? I actually had to swallow an anti emetic pill lst because my onc. said she had some guy actually throw up the radiation pill once so she does this as her standard practice now. Everyone gets an anti nausea pill first for the big radiation doses, not the follow up tracer ones though.

Well I made an appt. for my bone scan for this thursday. So we shall see. I am hoping the number is the same and has not gone down. Or else its back to the medication drawing board for my endo.

Trying to make a dental appt. too. Dreading that since I know my teeth got really bad post rai. That office is closed today.

 

[portocall]

I haven't been here in ages. My endo recommended me for surgery since my last scan showed my large cyst had become mostly solid. She did do a biopsy and it was inconclusive so instead of doing another we opted to do surgery in December and go with that. I had cervical cancer in 2004 and the biopsy didn't show just how aggressive it was at the time. Since I was pregnant it was a wait and see game with that one but the surgery ended up being way more than previously planned. I am really nervous for this surgery go some reason. What can I expect?

 

[mrsklamc]

They recommended you for thyroidectomy? I had a radical neck dissection, which is a bit more complicated than a thyroidectomy, and the surgery itself was not that big a deal for me- BUT I had an excellent surgeon and had no damage to my parathyroids, as many people here did. So my biggest recommendation is to get a surgeon that you know has done this surgery A LOT and done it well.

 

[SingingMom]

They recommended you for thyroidectomy? I had a radical neck dissection, which is a bit more complicated than a thyroidectomy, and the surgery itself was not that big a deal for me- BUT I had an excellent surgeon and had no damage to my parathyroids, as many people here did. So my biggest recommendation is to get a surgeon that you know has done this surgery A LOT and done it well.

Exactly the same advice from me! ;-). I am 20 years cancer free, had my surgery at age 30. No Internet at that time, so DH and I spent time in the university library with the medical books. All the books said to have a surgeon with x amount of thyroidectomies a year. When we asked my surgeon how many he did a year he smiled and said at least 5 a week. Lol. He was a very gifted surgeon. My new endocrinolgist said to me last week, "your scar is nonexistent. It's the best I've ever seen!". Pretty extensive surgery, too. I had no problems afterwards. Good luck to you!

Sent from my iPad using DISBoards

 

[dischick4778]

Exactly the same advice from me! ;-). I am 20 years cancer free, had my surgery at age 30. No Internet at that time, so DH and I spent time in the university library with the medical books. All the books said to have a surgeon with x amount of thyroidectomies a year. When we asked my surgeon how many he did a year he smiled and said at least 5 a week. Lol. He was a very gifted surgeon. My new endocrinolgist said to me last week, "your scar is nonexistent. It's the best I've ever seen!". Pretty extensive surgery, too. I had no problems afterwards. Good luck to you!

Sent from my iPad using DISBoards

This is so good to hear. Sometimes I think because I had the cancer so young it might come back and I might not make it through the next time. I am truly encouraged hearing about people who are 20 yrs out. Sorry to get off topic.

 

[luvmarypoppins]

I haven't been here in ages. My endo recommended me for surgery since my last scan showed my large cyst had become mostly solid. She did do a biopsy and it was inconclusive so instead of doing another we opted to do surgery in December and go with that. I had cervical cancer in 2004 and the biopsy didn't show just how aggressive it was at the time. Since I was pregnant it was a wait and see game with that one but the surgery ended up being way more than previously planned. I am really nervous for this surgery go some reason. What can I expect?

Just wondering if your endo sent you to the ent and what did the ent say? I had 2 inconclusive fine needle biopsies and then I also had to have a pet scan and then a core biopsy. They already decided on surgery for me since the pet scan showed cancer but they didnt know what kind, hence I had a core biopsy. I wouldnt recommend it unless the dr. is really skilled and they need a conclusive diagnosis etc. That was something like a caulk gun going in the side of my neck for the sample but my ent got what he wanted so he was happy and my dh who was with my took me to the Outback for dinner after that one.

Just wondering why you have to wait so long for your surgery too??

Wishing you all the best.

 

[luvmarypoppins]

Well I got my bone scan today and my R hip is killing me as usual. They said it takes 4 days to get to the endo, so I guess I will call in about a week or so and see what she says.

If all is well I guess its another reclast infusion for me in Nov. If the test numbers are not good then I guess she will have to come up with a Plan for me, so we shall see.

And on a disney note...my dh keeps talking about going to the Food and Wine. I saw a good deal at the Swan, you get the 6th night free so that is good plus you get a free room upgrade which he should get anyway since he is a starwoods member plus they are giving a $100 resort credit for food I think? and since we have the aps and the tiw card and I think my dh has enough points to get one way down on southwest for free for him, so it could be doable, but dh and I need to have a meeting of the minds. His idea of a vacation and mine arent the same thing. He likes to sleep in because he is on vacation. I cant blame him for that, But I like to get out and get going as I have the most energy early in the day and wear out later on etc. So we shall see. If we go it will be really last minute I think.

Hope everyone is well. Thinking of you all. Blessings always.

 

[Granfan]

Are you able to take pain meds for your hip? I hope your bone scan is not a bad report. Daughter missed a week of school (she's a teacher) for the RAI. I think it was like you said, just one pill and one for nausea. The full body scan results showed her neck "lit up" as the tech said and also remarked, "You will probably have to have more radiation". She actually never had radiation, just a complete thyroidectomy. The report said looks like residual rather than recurrent carcinoma OR thyroid tissue. So really still don't know. Oncologist sent her for ultrasound this week which showed "something." He offered radiation or another scan in 3 months. She is not happy with him, but I say no radiation until they know its cancer. They told her after the surgery there was no more cancer.
I really hope you get to go on the trip to Disney!!

 

[portocall]

Just wondering if your endo sent you to the ent and what did the ent say? I had 2 inconclusive fine needle biopsies and then I also had to have a pet scan and then a core biopsy. They already decided on surgery for me since the pet scan showed cancer but they didnt know what kind, hence I had a core biopsy. I wouldnt recommend it unless the dr. is really skilled and they need a conclusive diagnosis etc. That was something like a caulk gun going in the side of my neck for the sample but my ent got what he wanted so he was happy and my dh who was with my took me to the Outback for dinner after that one.

Just wondering why you have to wait so long for your surgery too??

Wishing you all the best.

I opted to wait because put gives me the most time to recover with the school schedule. I don't get much leave per year and don't accrue it. In case of complications, I will need the extra time. June would have been better but Endo wasn't comfortable with that. I go back monthly to have it checked and will absolutely push surgery up if there are changes. I have already meet with the surgeon who does these surgeries regularly and i have friends who have used him for their thyroids with great success and minimal scarring. The other reason for delay is it takes time to get me cleared for surgery unless its an emergency. My last pregnancy came with an autoimmune disorder that caused my blood to clot and I had several mini strokes in addition to the cervical cancer. Once the pregnancy was over that went away but based on history alone the anesthesiology dept has a fit, as I learned last year when I need my gall bladder removed. There are a ton of hoops that I am working on jumping through now.

The endo did not send me to the ent. They have only done ultrasound and fine needle biopsies. I will ask her her reasoning next week.

 

[luvmarypoppins]

Well I went to the dentist today. It went much better than I expected. I hadnt been there in so long. I am not good at the 6 month thing. Its more like a yearly thing with me.

I always floss everyday etc. No cavities except one tooth that needs a crown, but that has been an issue for a while.

Of course he tells me about your mouth being the gateway and the map of telling what is going on with your body etc.

Anyone have dental issues? Anyone have more dental issues post rai??

He said my bone is not so good. Always been a problem and I did tell him I got a reclast infusion so as to not lose more bone etc.

Still waiting to hear the results of my bone scan and blood work. The blood work was just normal stuff. Gheesh. Its been like 3 weeks I think. For the blood work. The bone scan has only been a week.

 

[mrsklamc]

I have horrible issues post RAI & never did before. Go in Monday to see how the last few months have gone.

Granfan- techs really shouldn't comment on what they think they see. I wouldn't worry about the 'lit up' comment.

 

[Christine]

Are you able to take pain meds for your hip? I hope your bone scan is not a bad report. Daughter missed a week of school (she's a teacher) for the RAI. I think it was like you said, just one pill and one for nausea. The full body scan results showed her neck "lit up" as the tech said and also remarked, "You will probably have to have more radiation". She actually never had radiation, just a complete thyroidectomy. The report said looks like residual rather than recurrent carcinoma OR thyroid tissue. So really still don't know. Oncologist sent her for ultrasound this week which showed "something." He offered radiation or another scan in 3 months. She is not happy with him, but I say no radiation until they know its cancer. They told her after the surgery there was no more cancer.
I really hope you get to go on the trip to Disney!!

Granfan,

Somehow I missed your post but mrsklamc's post brought it to my attention.

If you daughter had surgery with no follow up radiation, then it there is absolutely thyroid tissue still in her neck that is "lighting up." I have had two thyroid surgeons tell me that no surgeon is perfect enough to be able to remove all the residual cells. This tissue or these cells stay in the neck and they produce thyroid hormone and behave just like a thyroid gland.

Unfortunately, this tissue has the potential for having thyroid cancer in it also. The doctor that removed your daughter's thyroid and said "no more cancer" cannot know that for sure.

In my particular case, I had "multifocal" pappillary thyroid cancer. This is where you not only have a "lump" of cancer but you get small cells of cancer that are invisible to the eye that are peppered throughout the gland. It was imperative that I have radioactive iodine treatment afterwards. I can tell you that if I had NOT had that treatment, I most definitely would be dealing with a recurrence today.

If your daughter did not have multifocal papillary but just had the cancer confined to one lump within the thyroid gland, then it's a pretty good gamble to opt out of RAI treatment. If she did have multifocal and there is even a chance that there might be cells lurking in that "residual" tissue you really want to think about RAI. A thyroid cancer recurrence 5-10 years down the road is not a good thing. It is most often harder to treat and more aggressive. In fact, there is some theory that the anaplastic form of thyroid cancer (the deadly kind) stems from papillary that is left in the neck for too long.

I'm sorry that sometimes my information is such a 'downer' but I would feel negligent if I didn't say what the bad side could be.

 

[mrsklamc]

Christine- I was thinking she had RAI already since she was off school for a week but maybe that was just the tracer?

 

[Christine]

Christine- I was thinking she had RAI already since she was off school for a week but maybe that was just the tracer?

I was just going by this statement:

She actually never had radiation, just a complete thyroidectomy.

 

[mrsklamc]

I was just going by this statement:

Yeah...but a couple sentences before that she said she was off school for the RAI. So maybe they just did a tracer dose and that's what she meant by RAI. Guess we'll just have to wait for Granfan to come clarify for us!

 

[Granfan]

Sorry everyone, I have been off the computer to take care of grandaughter who had sinus surgery. Yes, daughter has had RAI the week she was off from school. Is that also called radiation? Is it possible that just this one RAI treatment could kill the leftover thyroid tissue? And I said oncologist , but it was actually the endo in charge of all this. Thanks for the help!

 

[Christine]

Sorry everyone, I have been off the computer to take care of grandaughter who had sinus surgery. Yes, daughter has had RAI the week she was off from school. Is that also called radiation? Is it possible that just this one RAI treatment could kill the leftover thyroid tissue? And I said oncologist , but it was actually the endo in charge of all this. Thanks for the help!

Yes, one treatment of high-dose RAI can kill leftover tissue. I'm sorry I was just so confused by your post. So she had an RAI treatment. When was that?

 

[Granfan]

She had the RAI about 3 weeks ago. A year and nine months after her surgeries to remove both sides of her thyroid. The endo had seen something on a test.