Tt On 05.21.08 - What's Next!?

Hello Everyone,

I keep reading and learning so much from these boards - things your doctors don't mention to you... and first, I'd like to say one thing to everyone - Keep your heads up!

Ok - here are my stats - I had a neck to thigh PET scan for something totally unrelated in my abdomen and nodules were found on my thyroid.  Had an FNA biopsy on 04.08 and was given the "news" on 04.16 that I had papillary TC. (!!!)  Had a TT on 5.21.08 which was no walk in the park if I might add.  I was in A LOT of pain.  2 shots of morphine back to back... nothing.  Lortab that had to be mashed into thickened apple sauce... nothing.  Finally had some Toradol and that took the edge of a tiny bit.  I don't even know how I made it home the next morning after the surgery.  But strangely... I felt pretty well 2 days later.  And yes, it's ture - every story and every person's recovery is very different.

 Now here's where I get confused.  What happens next?  I'm not getting a clear answer from anyone.  I'm reading that people are having on the spot biopsies and additional tissue/node removal during their TT's and was told all they removed during my surgery was my thyroid.  It's going to be examined and biopsied some more.  We go from there.  Shouldn't they have looked at other areas while they were in there?  i think that would have been wise.  I don't care how slow it grows - they don't know how long I've had this.

Met with my endocrinologist immediately following my dx.  She agreed with the surgeon that we should remove the entire thyroid b/c they noticed at least 2 or 3 nodules - one of them being on the itshmus (sp) and I was fine with that.  Take the whole thing.  (That biopsy was hellified!) Then she mentioned that after 6 weeks when I'm healed, I'd have a scan to determine what's what.  OK - so does scan mean IMAGING or does scan mean RAI, stay away from your family for weeks, be prepared to meet feeling like death warmed over.  And I asked her just that.  Her response was that people now take Thyrogen and don't go through the hell and madness anymore.  She never clarified if that was something I'd definitely be doing or what.  What's the norm?  If I'm going to be glowing and a danger to my 3 year old, I need to make plans NOW because I don't have a ton of family to take her.  Plus I need to be prepared to miss her!  Our house is small and it just seems too much of a risk to my husband and child regardless of them saying it only takes a day or so to leave your system.  No one warned me to stay away from my daughter immediately following a PET scan.  I had to read it online!  (Please be advised that a PET scan is potential danger to your young child!)

I'm also wondering why some people are prescribed Cytomel immediately after a TT and some Synthroid.  Because DAW wasn't written in the little box, I got Levothyroxine.  If I were going to know something was wrong with my dosage, when would I know it?  Within days of my TT? Weeks?

Any answers that you all could provide would be a tremendous help!

Thanks and blessings to all!

 

Wow, that was alot of questions (which is good).  I will do my best, telling you what I know.   Yes, lots of times people have lymph nodes removed during the TT, but not always.  Alot of times a surgeon will remove anything that looks questionable.  Why you did not have any removed, I don't know, maybe your surgeon felt sure there was no lymph involement. I'm sure the scan your endo is taking about is a wbs.  If you had multiple nodes you will probably need RAI.  You are lucky that your endo will do the thyrogen shots insted of going hypo, not all do for the first rounf of RAI.  That is probably the reason you were put on Levo insted of Cytomel.  Most of us go on Cytomel after our TT because it is fast acting, and leaves your system quickly to prepare for RAI.  If your endo doesn't  plan on having you go hypo, then there is no reason to use Cytomel.  If there is problem with your dose you won't know for a while.  Levo takes 2 months to stabolize in your system.  However by the time most of us get on Levo we are so hypo it takes alot longer, so your experience may be different.  Also, yes you will need to make plans to stay away from your little girl while you have the RAI.  This was the hardest part for me as I have two little ones myself.   You can do it, it sucks, but it is only for a short while.  Keep asking questions, there a a ton of great people here to help.  Skylog

 

On 5/27/2008 MonicaDanielle wrote:

Hello Everyone,

I keep reading and learning so much from these boards - things your doctors don't mention to you... and first, I'd like to say one thing to everyone - Keep your heads up!

Ok - here are my stats - I had a neck to thigh PET scan for something totally unrelated in my abdomen and nodules were found on my thyroid.  Had an FNA biopsy on 04.08 and was given the "news" on 04.16 that I had papillary TC. (!!!)  Had a TT on 5.21.08 which was no walk in the park if I might add.  I was in A LOT of pain.  2 shots of morphine back to back... nothing.  Lortab that had to be mashed into thickened apple sauce... nothing.  Finally had some Toradol and that took the edge of a tiny bit.  I don't even know how I made it home the next morning after the surgery.  But strangely... I felt pretty well 2 days later.  And yes, it's ture - every story and every person's recovery is very different.

 Now here's where I get confused.  What happens next?  I'm not getting a clear answer from anyone.  I'm reading that people are having on the spot biopsies and additional tissue/node removal during their TT's and was told all they removed during my surgery was my thyroid.  It's going to be examined and biopsied some more.  We go from there.  Shouldn't they have looked at other areas while they were in there?  i think that would have been wise.  I don't care how slow it grows - they don't know how long I've had this.

Met with my endocrinologist immediately following my dx.  She agreed with the surgeon that we should remove the entire thyroid b/c they noticed at least 2 or 3 nodules - one of them being on the itshmus (sp) and I was fine with that.  Take the whole thing.  (That biopsy was hellified!) Then she mentioned that after 6 weeks when I'm healed, I'd have a scan to determine what's what.  OK - so does scan mean IMAGING or does scan mean RAI, stay away from your family for weeks, be prepared to meet feeling like death warmed over.  And I asked her just that.  Her response was that people now take Thyrogen and don't go through the hell and madness anymore.  She never clarified if that was something I'd definitely be doing or what.  What's the norm?  If I'm going to be glowing and a danger to my 3 year old, I need to make plans NOW because I don't have a ton of family to take her.  Plus I need to be prepared to miss her!  Our house is small and it just seems too much of a risk to my husband and child regardless of them saying it only takes a day or so to leave your system.  No one warned me to stay away from my daughter immediately following a PET scan.  I had to read it online!  (Please be advised that a PET scan is potential danger to your young child!)

I'm also wondering why some people are prescribed Cytomel immediately after a TT and some Synthroid.  Because DAW wasn't written in the little box, I got Levothyroxine.  If I were going to know something was wrong with my dosage, when would I know it?  Within days of my TT? Weeks?

Any answers that you all could provide would be a tremendous help!

Thanks and blessings to all!

 

First...take a DEEP breath!  Everyone gets through this and so will you.  It is believed that I had thyroid cancer for 10 years or better and mine only spread to two lymph nodes and my uptake on the WBS was in the neck only.  Remember, this is the slowest growing cancer possible.  That's the good part of this entire ordeal.  If they didn't remove any lymph nodes, that is great!!  Celebrate because you have an excellent chance that it was all contained.  That is also why your endo is comfortable with Thyrogen instead of hypo hell.    I will say this, wait until you see the surgical and pathology report.  I had no idea he took lymph nodes until my surgeon and I discussed the pathology report. It will probably tell you that they examined the neck tissue and found it to look normal; they always check it out while they are in.  I did Thyrogen and life was normal.  I had zero side effects.  Most people don't have side effects.  But if you do, they are not serious and shouldn't affect your life too much; mild headaches and/or nausea.  A few patients have reported these side effects.

I have been on 125 mg of synthroid with no problems.  Remember again...everyone will react differently.  Your problem could be as simple as you need a higher dosage.  Also, make sure you are taking calcium supplements; also ask your endo.  She will check your calcium levels everytime she does blood work.  I take one viactive and one tums per day and my levels have been fine.  I was also told to make sure you take your synthroid on an empty stomach; 2-3 hours after eating before bed or 1 hour before eating when you get up.  This is VERY important.  Also, don't take it any closer than 2-3 hours after taking calcium supplement.  If you don't follow those rules, the synthroid can't work correctly; I do it at night.

I didn't have any reaction to RAI.  Alot of people don't.  You will be in isolation for only 72 hours if you have 100 mc or less.  They will probably tell you to stay away from your young daughter for a week to be safe, but I was around my husband after 72 hours.  No physical contact for a week to be safe.  I do have taste bud problems that developed two weeks after RAI.  I'm told it will last for 4-6 weeks.  I should take advantage of it and lose some more weight! LOL

You will do fine.  Just plan ahead.  Oh yeah, you'll be on the LID diet even with Thyrogen.  Use the cookbook; it will get you through.  If I can be of any help, contact me.  Just stay positive and you'll feel so much better!

Best of luck to you.

Donna

 

Deep breath taken!  :)  Thanks so much for the responses.  I just finished taking a look at the FNA cytology report and now notice the word Hurthle.  Researched it and am nervous all over again.  Is this something more serious?  Mentally and stenthwise - some days are better than others.  Today doesn't seem to be starting to be such a great day for me.  Any insight (and prayers) are welcomed!  :)