The surgeon I saw for a second opinion has sent me to an Endocrinologist. Tomorrow is the first appointment. Tuesday and Wednesday, I get to have the nuclear medicine thyroid scan. I am not real clear on how this all works, but I know that cold spots that show up are not good according to the surgeon's nurse. She did not explain that part...

I am hoping that somehow, I will be able to avoid surgery. I am still having a nasty flareup from procedures done in October and January and I cannot get this anywhere near under control... I don't know what the problem is, since I have been able to get down to 5 mg of Prednisone previously, sometimes lower. I am at 7 now and barely hanging in there.

Then, Thursday, my husband did something to the back of his knee-not cool for a teacher who works 2 jobs. He can barely walk on that leg and will have missed 2 days of school as of tomorrow, and has been down all weekend. I begged the Urgent Care doc to give him a cortisone shot, so he could function, but he did not want to do that, fearing he would walk on it and cause damage...

This is tough, because he is a person who is never sick, or hardly ever anyway. I think the last time he missed school like this was years ago, when I gave him 2 chocolate ExLax, believing that 2 work better than 1... Anyway... It does work, but now he doesn't let me doctor him too much...

Cathie

So you now seen two surgeons, right? The first, with the old journals on his shelf, just wanted to remove one nodule, and the second? I think I missed that. SO now you first go to an endocrinologist?

Seems to me that with three nodules, it's not likely to be cancer, and even if it were, biopsying by removing one would be enough. Have they said that?

Also, cancer is not likely, more likely it's burnt out from immune stuff. But even if it were--thyroid is one of the best cancers in the world to get. really.

I hope this week, with the endo, goes well, and you get a mensch.

The first surgeon didn't read the path report and didn't even realize there was more than one nodule. The second surgeon (the one I will use) wanted an Endocrinology consult, which I did today. The surgeon realizes I am not the best surgery candidate... Endocrinologist's recommendation was to remove the thyroid lobe with the large nodule, although I would risk having to have 2 surgeries if they have to go back in because of the smaller nodules. The surgical pathology report might not show anything until a few days later.

Options as I see them:
One-Remove the whole thyroid.
Two-have the scans Wednesday and if the spots are hot, just watch them for a while. If cold, the whole thyroid has to come out.
Three-have the lobe removed with the larger nodule, if malignant, this would probably require a second surgery and the whole thyroid would be removed.

I am trying not to think about the radium exposure. The other thing is this flareup is getting worse. My body is NOT going to like any of the above...

I thought they could use Radioactive Iodine to shrink the nodules, but the Endocrinolgist said only if they are not malignant and the only way to tell that is by biopsy.

What would you guys do???

Cathie

Cathie,
I didn't see this thread yesterday, sorry no one's answered. It's a tough decision and no one wants to tell you to do the wrong thing. We all care about you. I can't make this decision either. You..are the one who has to make it. Have you discussed it with your husband?

I can sympathize with you and your husband. My husband is much like yours and we're going thru a crisis too. Let us know what you decide to do.

Hugs,

Billye

instinct/brain/gut say? Really, I'm betting you've read everything you could find on the net and are even more confused from the 'fudging' so many medical sites tend to do.. It Boils down to what YOU think YOU need, as long as your DOCS are able to provide you with valid test results: Blood, mri and other tangible sources....well YOU can work off of that and DECIDE.. gotta tell you tho, once comitted, it's just that....committed!
I guess it's boiling down to how much you trust the surgeons, their reasons for doing or not doing stuff and more importantly WHY... If they can be clear about the pros/cons of doing whatever...that can help YOU choose and I deeply hope, choose clearly.

I say this as I am one who is intermittently 'haunted' by the 'what-ifs/if-onlys' regarding my overall med treatments and choices and times of choice. Well...Past is done. Current and future are, and should be, 'In Progress'.
It all comes with a set or sets of compromises....Informed decision [in all quarters] prior to decisions that can't be reversed is critial to your final decision. We all have to make some sort of 'lemonade' with what we have...Do you have some spare 'sweeteners'?

Hugs, Good thoughts, and super soft fuzzies to you for the interim! - j

Will PM you w/a special thought... - j

I had the nuclear scan Wednesday and today the second surgeon's nurse called me to tell me that it came back normal... I don't see how this can be. I could see the 2 small nodules being overlooked, but the larger one is 1.5 cm... While I would be happy to avoid surgery, this seems strange... I guess I need to check with the Radiologist who read the scan.

I don't think my PN likes iodine very much. I spent Tuesday afternoon (after the radioactive capsule) in my regular docs' office in terrible pain. Wednesday, I had the scan and spent the afternoon in the Urgent Care doctor's office, and Wednesday night in the ER at the hospital. I have never had any kind of reaction to iodine before, as far as I know. This very clearly took place after the capsule and scan. What is the deal? I thought reactions to iodine were like anaphylaxis.

I was already in a flareup of problems, but this set me on fire all over. Does anyone know anything about this kind of thing?

Cathie

You're writing about "options", but who came up with these? The surgeon? The endo? Or you?

Because at this point, I think you just have to listen to what a couple of doctors say, and give it over to them. Without removing one nodule as a "biopsy", you don't yet know what you have, right? One step at a time.

Unless I've mis-read this thread and missed something. And radio-active treatment of the thyroid is very old, tried and trued, and not particularly dangerous. Let's hear what the docs say.

Unless, as I said, I missed that. Then please send the link.

The Endocrinologist came up with the options. The second surgeon's nurse is the one who told me the Nuclear Scan came back normal.

Well, it seems that this is not the way the Endocrinologist is interpreting it.
His nurse practitioner called me today and said that she had shown the test results to the Endocrinologist and he said the test is not positive and not negative and HE feels I should have my thyroid removed. Gee, I was getting all excited thinking I might be able to avoid this...

I also asked her about the radioactive iodine causing pain-she said she had never heard of that...

So, for what it is worth... Does anyone know about stuff like this? Like, maybe the vasculitis I have keeps the radioactive iodine from being taken up like it is supposed to do in the test...

Cathie