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 06-04-2011, 11:04 AM   #1
Member
(male)
 
Join Date: Jun 2008
Location: New York, NY, USA
Posts: 64
Doog HB User
The ever continuing thyroid cancer saga... HELLLLP

Hey guys-

I've posted before. I'm now a 24 year old male, who has had persistent but "stable" thyroid cancer for the last 8 years. Had a total thyroidectomy and left radical neck dissection in June 2004 (age 16) a right neck dissection in December 2005 (age 17), and my thyroglobulin remained persistently elevated (stimulated at last rtsh test was 55; tsh suppressed to .05 thyroglobulin 8-12). Recently I've been having persistent problems breathing. They have now found the lymph nodes via pet scan, but have given me the option of not removing them and just intensely monitoring given that one of the nodes is in a difficult spot (the parapharyngeal space), while the other 2 lymph nodes are level ii. They swear that my breathing problems are not caused by those nodes, but I can't help but be suspicious. I am RAI resistant (have had 2 150 mci does that did not change anything). Is it possible that scarring could be causing this, or the nodes? And is there anything other than surgery I can do to end this ridiculous, neverending tribulation???


ugh.

 
The following user gives a hug of support to Doog:
belladog (10-02-2011)
The Following User Says Thank You to Doog For This Useful Post:
belladog (10-02-2011)
Old 06-06-2011, 07:12 AM   #2
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: The ever continuing thyroid cancer saga...HELLLLP

So sorry you are going through this. I like the idea of watching carefully and waiting. It sounds like your doctors are really on top of this.

You might want to go (if you aren't there already) to Sloane Kettering and get one more opinion before you make a decsion of your next step. Sloane docs. can help you get into clinical trials if they think you fit the protocols.

Will be thinking of you!

 
Sponsors Lightbulb
   
Old 06-07-2011, 03:20 PM   #3
Inactive
(female)
 
Join Date: Apr 2008
Location: USA
Posts: 284
Linda1652 HB UserLinda1652 HB UserLinda1652 HB UserLinda1652 HB UserLinda1652 HB UserLinda1652 HB User
Re: The ever continuing thyroid cancer saga...HELLLLP

From what you are saying, you have a somewhat elevated TG, with the disease being in the neck nodes. When TG is low level like yours and mine, that's where the thyroid cancer is hiding. Watching and waiting in the normal protocol. Don't even think about clinical trials---those are for people with much worse scenarios. According to the guidelines that Doctors use for treating thyroid cancer, there are roughly 1/3 of us with TG, where the source can't be found. And, we live long lives with TG. That is why they aren't so inclined to aggressive treatments as they once were. Thyroid cancer in the lymph nodes has the same prognosis as for thyroid cancer isolated in the thyroid. You are going to be fine, but this may end up being a chronic condition. That's where I feel bad for you---you are too young to have these worries!! Live your life and try to forget about it. You aren't going to die from this. Your breathing issues are most likely allergies, asthma, or emotional. You could have an ENT check it out if it would ease your mind.

 
Old 06-25-2011, 01:10 PM   #4
Member
(male)
 
Join Date: Jun 2008
Location: New York, NY, USA
Posts: 64
Doog HB User
Re: The ever continuing thyroid cancer saga...HELLLLP

Thanks, all! I'm with the docs at Beth Israel.

Is a Tg of 8 with a super suppressed tsh of .05 still considered a low level tg that would be definitely asymptomatic? My surgeon and endo say yes. I have plenty of energy with no real hyper symptoms (BP 110/70 and resting heart rate low 50's), but is that tg of 8 still considered a low level if its being monitored????

 
Old 06-25-2011, 03:11 PM   #5
Inactive
(female)
 
Join Date: Apr 2008
Location: USA
Posts: 284
Linda1652 HB UserLinda1652 HB UserLinda1652 HB UserLinda1652 HB UserLinda1652 HB UserLinda1652 HB User
Re: The ever continuing thyroid cancer saga...HELLLLP

I am sure you would like to hear from someone else, but this site doesn't have too many people. You might want to do some research to find others you can ask!! We aren't allowed to advertise other groups here. Just do a search---I promise you will thank me!!!

Don't blame you at all for worrying, but a TG of 8 is low. The cancer at this point is microscopic. Were you off meds when you had your pet? Usually PET doesn't detect nodes unless you are off meds, which makes the cancer "active".

I bought a textbook that was written by the thyroid cancer experts. Also, you can find the guidelines they use, so you will believe your Dr. is following protocol.

 
Old 06-25-2011, 03:26 PM   #6
Member
(male)
 
Join Date: Jun 2008
Location: New York, NY, USA
Posts: 64
Doog HB User
Re: The ever continuing thyroid cancer saga...HELLLLP

Linda, I had thyrogen before the PET. It raised my tg to 55, with a tsh of 60 or so, but with my tsh at .05, my tg remains about 8.

 
Old 06-27-2011, 08:04 AM   #7
Inactive
(female)
 
Join Date: Apr 2008
Location: USA
Posts: 284
Linda1652 HB UserLinda1652 HB UserLinda1652 HB UserLinda1652 HB UserLinda1652 HB UserLinda1652 HB User
Re: The ever continuing thyroid cancer saga...HELLLLP

55 is "sort of" high. But, I do know of others who have close to the same TG as you. They have had multiple RAI's. The source of their TG cannot be found.

When I had a PET, it didn't show anything, because I didn't have thyrogen. Your endo was smart to do it with thyrogen.

Thyroid cancer can be in the lymph nodes and stay stable. When your TG starts going up, they will probably be more aggressive. Otherwise, you are going to end up with multiple surgeries which do have their own risks. Sometimes neck dissections don't go well. People have had issues with their shouldars and arms. You are too young to live your life like that.

 
Old 06-27-2011, 08:07 AM   #8
Inactive
(female)
 
Join Date: Apr 2008
Location: USA
Posts: 284
Linda1652 HB UserLinda1652 HB UserLinda1652 HB UserLinda1652 HB UserLinda1652 HB UserLinda1652 HB User
Re: The ever continuing thyroid cancer saga...HELLLLP

There is a Doctor at Sloan who is one of the utmost experts on thyroid cancer. Since you are right there, you might want to talk to him for peace of mind.

Last edited by moderator2; 06-27-2011 at 08:47 AM.

 
Old 06-28-2011, 05:34 AM   #9
Inactive
(female)
 
Join Date: Apr 2008
Location: USA
Posts: 284
Linda1652 HB UserLinda1652 HB UserLinda1652 HB UserLinda1652 HB UserLinda1652 HB UserLinda1652 HB User
Re: The ever continuing thyroid cancer saga...HELLLLP

If you go to the thyroid cancer guidelines that the Doctors go by to treat this, you will see that there are roughly ONE THIRD of us in this situation, where there is TG but the source can't be found. Actually, the Doctor you consulted did a study last year that shows we can live like this the rest of our lives. That is why they do not do repeated RAI's like they once did. There are so many people with fried salivary glands that were not helped by RAI. It really doesn't work for thyca in the lymph nodes.

In most cases, thyroid cancer is very slow growing. The synthroid you are on should keep it at the level it is now. I probably got my thyroid cancer when I was your age. I discovered it at age 37, but they thought it was a calcified lymph node. I didn't have it removed until age 55!!

To tell you the truth, I am glad I was able to live my life when I was young without this burden. I know it's hard---but try to believe this won't kill you, but will be a chronic condition. I don't blame Dr.s for not wanting to remove more neck nodes. Thyroid cancer in the lymph nodes doesn't affect the prognosis.

 
Old 06-28-2011, 04:39 PM   #10
Member
(female)
 
Join Date: Aug 2009
Location: Alaska
Posts: 70
fireweed HB User
Re: The ever continuing thyroid cancer saga...HELLLLP

I am assuming that you don't have Tg antibodies - do you know? Those do mess with the Tg results so it's important to know if you have them or not.

There are a few places, such as Mayo Clinic, which offer alcohol ablation for thyroid cancer affected lymph nodes (as opposed to surgery) but it's not an option in every case - still something worth being aware of. For a while I had a watch on a lymph node between my carotid and jugular - they were not keen on testing that one!

I have had two or three PET scans but never with thyrogen - stuff lit up just the same. Maybe that depends on the individual's situation. Thyroid cancer can lurk in places that are hard to see, unfortunately.

 
Old 06-29-2011, 06:20 AM   #11
Inactive
(female)
 
Join Date: Apr 2008
Location: USA
Posts: 284
Linda1652 HB UserLinda1652 HB UserLinda1652 HB UserLinda1652 HB UserLinda1652 HB UserLinda1652 HB User
Re: The ever continuing thyroid cancer saga...HELLLLP

Usually well differentiated thyroid cancer will not light up, unless it becomes active when a person isn't suppressed while on thyrogen. What type of cancer did you have?

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Thyroid cancer and Breast cancer? marsv63 Cancer: Thyroid 5 02-18-2011 11:12 AM
Atypical thyroid cancer Survivor2Be Cancer: Thyroid 12 08-27-2009 07:37 AM
Thyroid cancer - after two surgeries, now in radioiodine therapy quarantine lis1332 Cancer: Thyroid 6 05-07-2008 12:57 PM
How can they tell if thyroid cancer has spead to lymph nodes? 11marie11 Cancer: Thyroid 4 02-13-2007 05:01 AM
How common is Thyroid cancer really? Colomolo Cancer: Thyroid 3 02-25-2005 03:30 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 (1165), MSJayhawk (1000), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (668), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 03:15 AM.



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!