It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cancer: Thyroid Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 07-31-2010, 07:40 PM   #1
Junior Member
(female)
 
Join Date: Jul 2010
Location: Houston, TX
Posts: 11
Ellie77 HB User
Thyroid cancer

Hello everyone,

I found a nodule a few months ago. I had a biopsy done and the cells came back abnormal. I have since met with my surgeon and I will be having a thyroidectomy. I am terrified. I am only 27. I have done alot of reading and I know the prognosis is good. I was just wondering how do they determine metastasis? I had a CT scan with contrast and they told me they didnt see any other nodules. My thyroid hormone levels are normal.

 
The following user gives a hug of support to Ellie77:
bocaswang (05-07-2011)
Old 07-31-2010, 10:12 PM   #2
Senior Member
(male)
 
Join Date: Dec 2006
Location: Maryland
Posts: 110
jroland HB User
Re: Thyroid cancer

Quote:
Originally Posted by Ellie77 View Post
Hello everyone,

I found a nodule a few months ago. I had a biopsy done and the cells came back abnormal. I have since met with my surgeon and I will be having a thyroidectomy. I am terrified. I am only 27. I have done alot of reading and I know the prognosis is good. I was just wondering how do they determine metastasis? I had a CT scan with contrast and they told me they didnt see any other nodules. My thyroid hormone levels are normal.
Ellie,

Sorry that you have received this preliminary diagnosis, but you are right in that the prognosis is good (to excellent). That you have received this preliminary diagnosis at such a young age is good, as well. The most common types of thyroid cancer are papillary (78% common), and then follicular (17% common). Medullary (4% common) and especiallly anaplastic (1% common) are rare. Therefore your overall odds of being completely cured, based on the strong likelihood that you have either of the more common varieties and that your are so young (< 40), are outstanding. Generally for determining metastasis a CT scan is used (after radioactive iodine has been administered).

Please try not to worry. That the cells analyzed were abnormal does not necessarily dictate cancer, but even if it turns out there is a cancer, there are so many treatments, so many highly effective ways to fight--and beat--the cancer; and on top of this you are so young, and this works very much in your favor too.

Within a week of your thyroidectomy you will know the results of the pathology report, and from there you will know what need be done next. This will range from nothing, to a second surgery (rare) and then radioactive iodine therapy, to radioactive iodine therapy alone. It is all just a process. Think of it as only that, and you will worry less.

I wish you all the best, and please post back when you know more.

Take care.

JR

Last edited by jroland; 08-02-2010 at 08:10 AM. Reason: Updated section about determining distant metastasis

 
The following user gives a hug of support to jroland:
blessed1659 (02-27-2011)
Sponsors Lightbulb
   
Old 08-01-2010, 07:33 AM   #3
Senior Veteran
(female)
 
Join Date: May 2005
Location: NY
Posts: 3,677
Reece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB User
Re: Thyroid cancer

Thyroid tissue, usually takes up iodine. The way they look in most situations for metastisis would be after your surgery, when you have RAI treatment. Several days after you take an RAI pill to destroy all thyroid tissue (sometimes several months later) they will do a whole body scan, with special settings to see if there is any microscopic spread in the body.

Most of the time, pappillary (what I had) spreads in the neck, and that's basically it. Rarely, follicular, might spread to the lung and bones, but that's really rare. Usually, any spread is local in the neck in lymph nodes.

You will be kept for a while on tsh suppression doses of thyroid hormone, to prevent a spread or recurrence.

Another way, if a whole body RAI scan doesn't find anything, they could do a pet scan. But the protocol these days, after your clean RAI whole body scan, is to measure via blood, your thyroglobulin, and do neck ultrasounds (because if it's going to spread anywhere, it will be the neck).

It rarely spreads, you likely have stage 0, based upon your age, and you will be cured with surgery, and then for good measure, have RAI.

 
Old 08-01-2010, 09:07 AM   #4
Senior Member
(female)
 
Join Date: Apr 2010
Posts: 112
Yannick HB User
Re: Thyroid cancer

Hi Reece
I wonder if they can tell before RAI if you have distant metastasis. I was told after the TT pathology report came in that I had no distant metastasis, no lymph nodes and no vascular involvement.
The post RAI scan done last week confirmed the diagnosis.
Y.

 
Old 08-01-2010, 02:04 PM   #5
Senior Veteran
(female)
 
Join Date: May 2005
Location: NY
Posts: 3,677
Reece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB User
Re: Thyroid cancer

They can tell, I think, only what your tissue shows. I had vascular invasion and invasion into the muscle in front of the thyroid, but not to the enlarged lymph nodes sampled. That's about as much info. as they could determine from my surgery.

A path report, I think, can show only the material they have to work with. If it's encapsulated in the nodule, it's good news and likely that it didn't go anywhere else.

The scans confirmed nothing was "taken up" elsewhere---in the whole body scan was what they told me the final thing to tell me no distant metastesis on the report, but that's the only thing I knew. And as my surgeon said, the good news, was if they did find anything taking up iodine at a distance during RAI, it means it was curable with RAI.

Last edited by Reece; 08-01-2010 at 02:05 PM.

 
Old 08-01-2010, 06:40 PM   #6
Junior Member
(female)
 
Join Date: Jul 2010
Location: Houston, TX
Posts: 11
Ellie77 HB User
Re: Thyroid cancer

see next posting. My comp was messing up.

Last edited by Ellie77; 08-01-2010 at 06:55 PM.

 
Old 08-01-2010, 06:54 PM   #7
Junior Member
(female)
 
Join Date: Jul 2010
Location: Houston, TX
Posts: 11
Ellie77 HB User
Re: Thyroid cancer

Thanks everyone. It's been a scary process. I cried like they told me I had days to live..looking back now I feel kinda silly. My surgery is late Aug.My specialist did say that it is highly curable. So i really just have to stay positive. I'm so ready to have this taken out and hopefully be free of these "suspicious" cells. I'm so thankful for this website and am so glad I came across it. I've been reading other threads with individuals who have had the same problem. I will update post surgery.

 
Old 08-02-2010, 08:08 AM   #8
Senior Member
(male)
 
Join Date: Dec 2006
Location: Maryland
Posts: 110
jroland HB User
Re: Thyroid cancer

Quote:
Originally Posted by Ellie77 View Post
Thanks everyone. It's been a scary process. I cried like they told me I had days to live..looking back now I feel kinda silly. My surgery is late Aug.My specialist did say that it is highly curable. So i really just have to stay positive. I'm so ready to have this taken out and hopefully be free of these "suspicious" cells. I'm so thankful for this website and am so glad I came across it. I've been reading other threads with individuals who have had the same problem. I will update post surgery.
Ellie,

There is no need to feel silly at all; anyone given that diagnosis would have found it scary, no matter what they knew beforehand. There is just something about hearing that word and your name with it that is just jarring. Best of luck with your surgery. It is entirely possible that those supicious cells are nothing at all and post surgery you will need no further treatment.

JR

 
Old 08-30-2010, 06:08 PM   #9
Junior Member
(female)
 
Join Date: Jul 2010
Location: Houston, TX
Posts: 11
Ellie77 HB User
Re: Thyroid cancer

Hello Everyone,

I am 6 days post-op for a TT, 4 cm nodule, and a few lymph nodes. It went well, the anesthesia made me very sick but once that was out of my system I felt very little pain. I was in the hospital for less than 24hrs post op. I had one drain tube in and felt discomfort but no pain when they removed it. It hurts more to take the tape around my incision site off than it did when they removed the drain tube. The biggest complaints was it took about 3 days before I could swallow with no pain and I had some neck stiffness. My incision site is surprisingly not very big and it is healing nicely.

I got my patho results over the phone yesterday I was prepared for it to be cancer and it was. My endo said it is papillary thyroid cancer. The cancer had spread to a few surrounding lymph nodes. I'm not sure how many yet I have a follow up in 2 days with the surgeon who did the surgery. I haven't talked to him yet but he told my fam while I was in recovery that he thinks he got all the cancer out. I spoke to my endo on the phone he said I will most likely need RAI treatment. I'm currently on Cytomel but will soon stop taking that and be hypothyroid in order to do the RAI. I follow up with my endo later this week. Just taking it one day at a time until then. I've met many thyroid cancer survivors (who have been cancer free for years) along the way. It really has helped me keep a positive attitude and outlook. Cancer treatment has come a long way. Stay positive everyone! & thanks to all that have been supporting me on this journey. Keep me in your prayers!

 
Old 08-30-2010, 08:01 PM   #10
Senior Member
(female)
 
Join Date: Apr 2010
Posts: 112
Yannick HB User
Re: Thyroid cancer

Good to hear that you made it fine through the surgery, although it sounds like you had some rough moments. You sound like you have a very positive attitude and the fact that you prepared yourself for the cancer diagnosis diminished the shock.
The RAI does not have any side effects. I just found the logistics of being away from my kids more difficult than anything else. It takes some planning.
I wish you the best for your recovery. The LID is a pain but it's really not too bad. < edited >
Keep in touch and don't be afraid to ask questions.
Y.

Last edited by hb-mod; 09-08-2010 at 01:58 AM. Reason: Please don't post unapproved websites, per Posting Policy. Thanks!

 
Old 09-04-2010, 05:52 PM   #11
Junior Member
(female)
 
Join Date: Jul 2010
Location: Houston, TX
Posts: 11
Ellie77 HB User
Re: Thyroid cancer

Thanks Y.

Hey everyone,

I was wondering how they determine if there is distant metastasis. I know for my surgery they removed 20 lymph nodes that looked suspicious and 10 of those were malignant. On my medical records under is there distant metastasis it read unable to determine. Should I worry? I've had 2 CT scans one of the chest and abdomen, then I had another CT scan last month b/c I was having stomach pain. The 2nd CT was of the abdomen and pelvis. They said everything was normal on the CT's the abdominal pain was a result of an inflamed appendix. If there had been cancer present wouldn't it have shown up on the CT? I'm just hoping this is still curable despite the lymph node involvement. My endo said my prognosis is very good. He said it is quite common for there to be lymph node involvement with papillary ca. and that he wasn't too worried about it. I start LID later this week.

 
Old 09-04-2010, 06:09 PM   #12
Senior Veteran
(female)
 
Join Date: May 2005
Location: NY
Posts: 3,677
Reece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB User
Re: Thyroid cancer

After you take the RAI pill to ablate the thyroid tissue, if they do a Whole Body scan 2 days later, they can put it on a special setting, to see if the iodine lights up in any part of your body---if it does, they will be able to identify any distant metastices. It doesn't usually show up on a CT, but on the RAI whole body scan, because thyroid tissue usually sucks up the iodine and makes it light up.

The scan doesn't show cancer per se, but thyroid tissue. They will assume any thyroid tissue, that's traveled in the body is thyroid cancer, but in reality, the only true diagnosis is pathology.

It's rare that this goes beyond the neck, I'm guessing the whole body scan will be clean. If not the first place they'd look is lungs. There is likely some thyroid tissue in the thyroid bed, and that will be something they will find, and will at the same time be killed.

Either way, most of the time, even if it goes to another part of the body, the same RAI will go and kill the thyroid tissue wherever it pops up in the body.

 
Old 09-07-2010, 08:07 PM   #13
Junior Member
(female)
 
Join Date: Jul 2010
Location: Houston, TX
Posts: 11
Ellie77 HB User
Re: Thyroid cancer

Thanks Reece I guess it's just waiting game for me. I'm so afraid there is distant metastasis and this is no longer curable. I'm trying not to let this consume my life but unfortunately it has. Not sure if this is accurate but I've been told by other thyroid ca survivors that even if there is metastasis RAI should get rid of those cells, although it may be necessary to do more than one round of RAI. I got my TNM staging it frightened me pT3 pN1b M0. I guess M0 means no distant metastasis just now saw that. Hopefully the body scan will be clear. I know staging for thyroid cancer is done a little different and includes age so according them them I'm a 2. Today is day 2 of no thyroid hormones and LID, my emotions are running high already. I'm just trying to stay positive!

 
Old 09-23-2010, 02:58 PM   #14
Junior Member
(female)
 
Join Date: Jul 2010
Location: Houston, TX
Posts: 11
Ellie77 HB User
Re: Thyroid cancer

Hello Everyone,

I did my thyroid scan pre-RAI and bad news: it showed a small amount of residual on the left side of my neck where the nodule was: Good news: no distant metastasis noted. I will be doing RAI treatment this coming week. Please say a prayer for me. My endo said RAI should destroy any remaining thyroid cells left in the body. Let's hope and pray he is correct so I can move on with life and eat good food again; LID is no fun! Any suggestions in preparations for RAI? I've already made my stay arrangements to be isolated. I've read that lemon drops help with the salivary glands.

How long post RAI did you guys begin thyroid meds? I'm on week 3-4 of nothing everyday is different for me, some days I have great energy other days I have nothing but enough to get dressed and eat. I've had alot of hair loss that I've noted after showering and my skin is breaking out I assume this is all part of being hypo. I'm looking into thyrogen injections. Did anyone have those? If so why are they not offered? I've only read a little about them. Any suggestions? I hear they are costly as well.

-Ellie

 
Old 09-23-2010, 05:11 PM   #15
Senior Member
(male)
 
Join Date: Dec 2006
Location: Maryland
Posts: 110
jroland HB User
Re: Thyroid cancer

Quote:
Originally Posted by Ellie77 View Post
Hello Everyone,

I did my thyroid scan pre-RAI and bad news: it showed a small amount of residual on the left side of my neck where the nodule was: Good news: no distant metastasis noted. I will be doing RAI treatment this coming week. Please say a prayer for me. My endo said RAI should destroy any remaining thyroid cells left in the body. Let's hope and pray he is correct so I can move on with life and eat good food again; LID is no fun! Any suggestions in preparations for RAI? I've already made my stay arrangements to be isolated. I've read that lemon drops help with the salivary glands.

How long post RAI did you guys begin thyroid meds? I'm on week 3-4 of nothing everyday is different for me, some days I have great energy other days I have nothing but enough to get dressed and eat. I've had alot of hair loss that I've noted after showering and my skin is breaking out I assume this is all part of being hypo. I'm looking into thyrogen injections. Did anyone have those? If so why are they not offered? I've only read a little about them. Any suggestions? I hear they are costly as well.

-Ellie
Hi, Ellie. Sorry to hear of your diagnosis and for all you are going through right now. I know how difficult it is. My thoughts and prayers go out to you. On Tuesday I had my RAI, 98.1 millicures (a value based on dosimetry, which showed a significant amount of thyroid tissue remaining in my thyroid bed following total thyroidectomy--I guess total was not so total after all; now my odds of needing a second RAI are up to 50%), for papillary thyroid carcinoma. The RAI experience was difficult for me because my stomach was hurting badly and the room was freezing. I managed just a few hours sleep and do not know what I would have done had my radioactive reading not been low enough the next day for me to return home (of course it was not as low as they "expected"). With the lack of sleep, lack of "real" food in me, total lack of thyroid medication in my body, a TSH of 99: I think with all of that I would nearly have gone postal if I had to spend one more night in that hospital room.

I could not agree more about the low-iodine diet. The unsalted matzos and peanut butter and raisins. Ugh. Some of the other choices on that diet are better and I was fortunate enough to have a loved one prepare for me some dinners that were almost actually good. Very, very fortunate I was.

I have two suggestions for your RAI: 1) bring along three or four pair of expendable knee-high socks to keep your feet and legs warm (the paper-thin blankets in the hospital provide almost no help), and if you can an expendable blanket that actually is warm to cover the rest of you; 2) bring with you your own laxatives, so you do not have to call the nurse at 3:00 in the morning and make such a request (I was told it would be no big deal to do so, but when actually there the nurse said she would have to call the doctor; why she would I cannot even begin to guess). If you have any stomach discomfort, take the laxatives immediately; do not wait until the discomfort is bad. I did and I was sitting for several hours in the bathroom, shivering even after one of my five hot showers, with horrible cramps.

Now that I think about it, I have a few more recommendations. Bring with you at least two bags of lemon candies, ones with sugar instead of an artificial sweetener (I brought both kinds and one of the techs said only the "sugar" ones were acceptable).

Expect to have many, many people talk to you before your actual treatment. If a lot of these "talks" seem redundant, well, in my view they are (I suppose each talk can be billed as a separate expense). Also, expect a redundant vitals check, too (perhaps for the same reason). Two hours after your treatment expect to take many showers and consume much water and lemon-flavored drink.

If you have any expendable magazines and/or paperbacks, bring a few along. Watching television can get really, really boring after so many hours with nothing else to do but look out the window and wait for nightfall

Do not bring a laptop, a Kindle, an MP3 player--any expensive electronic equipment. It may become contaminated, in which case they will hold onto it for a few days (and then bill you, probably at a special "hospital" mailing rate, for having to ship it back to you).

I know I have painted a rough picture of my RAI experience. My experience is atypical, however; most people I know who have gone through it have done so just fine. I read that some people have even enjoyed their experience.

As for the thyrogen route, I would imagine most patients would prefer to take that road instead of the other, more traditional one (because of the amount of thyroid tissue remaining in my thyroid bed, my doctor recommended the latter.)

I will be thinking of you and wishing you well as you go through your RAI treatment. Just remember that it is only a one, or at most two, day affair, and then you can come home and get on with your recovery, start putting all of this behind you.

JR

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
i have thyroid julia35 Thyroid Disorders 16 09-06-2011 12:05 PM
My U/s results showed two hypoechoic solid nodules in my Thyroid sn9500 Open to All Other Health Topics 2 08-01-2010 06:08 PM
Atypical thyroid cancer Survivor2Be Cancer: Thyroid 12 08-27-2009 07:37 AM
New--have thyroid, anemia and digestive issues--anything welcomed! TedsWife Thyroid Disorders 2 12-14-2008 04:24 AM
Question about thyroid scan and RAI kcf71 Thyroid Disorders 6 08-06-2008 12:53 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



Reece (19), Linda1652 (11), thyroidmess (8), debmc1958 (3), bare501 (3), sman65 (2), Yannick (2), Tisha Mac (2), Jamie09 (2), anxiousagain (1)

Site Wide Totals

teteri66 (1164), MSJayhawk (999), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (667), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 01:51 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!