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papillary rcurrance

cravtap
Posts: 11
Joined: Mar 2006

Definately need feedback recently underwent second surgery for recurrant thyroid cancer of the lymphnode. After surgery biopsy said negative for any cancer. Drs are bewilldered as am I. now they want to do a full body scan to find it as they don't really seem to know where it is located this time around. lung nodule showed on Pet Scan and now they are scanning to see if it is thyroid or lung cancer. To be honest I am about terrified of having lung cancer regardless of stage detected. Since Thursday all I do is cry. I cannot fotce myself to get out of bed just to take my daily meds. Will welcom any comments and advise. Pat C

Rustifox's picture
Rustifox
Posts: 131
Joined: Mar 2005

Hi, ((Pat)). Have you asked for a second opinon on the pathology of the removed lymph nodes?

This is always a good idea - there are variants of thyroid cancer that can be more difficult to 'read', and there are expert pathologists in the field who will review this, if your doctors contact them. I would want to have that done. This is quite a clinical article, but does give you an idea how 'touchy' reading pathology of some thyroid cancer can be:
http://www.moffitt.usf.edu/pubs/ccj/v7n3/pdf/dept6.pdf

If thyroid cancer moves to our lungs, it is still considered 'thyroid cancer', not lung cancer - and many folks have had this completely treated successfully with radioactive iodine. The prognosis can still be very good, even with lung mets, so please don't give up on yourself, ok?

If you haven't done so, consider posting with this group - you can read the posts at the website (it is a VERY active group - hundreds of messages a day sometimes, so I would likely suggest the 'no email' option, and just read the posts at the website). It's free to join:
http://health.groups.yahoo.com/group/Thyca/
http://www.thyca.org/support.htm
And there is also an online 'advanced' thyroid cancer group, that may be helpful to you, as well:
http://health.groups.yahoo.com/group/adv-thyca/

And here are the local support groups - perhaps you can find a meeting in your area:
http://www.thyca.org/sg/local.htm

It is understandable to be concerned, and very upset right now, but please know that lung mets from thyroid cancer CAN be successfully treated, with very positive outcomes.

It is very, very important, though, that you are dealing with 'the best thyroid cancer' doctors, who are very familiar with persistent or recurrent thyroid cancer - you need the experts now.

You might want to consider posting a message for suggestions of experts in your area; a few that I know of are Dr. Michael Tuttle on the East Coast in the New York area, Dr. Kenneth Ain in Kentucky, and the folks at MD Anderson. Here are some links to get you started, and of course, the above group can help you along with this, too:
http://www.mdanderson.org/diseases/thyroid/
http://www.thyroid-cancer.net/resources/findaspec.php3

http://www.mc.uky.edu/endocrinology/files/ain.pdf

http://www.thyroid.org/patients/specialists.php3

Pet scans show tissue that is 'active' - there is a good explanation of PET use in thyroid cancer here, if you'd like to read more about this:
http://bjr.birjournals.org/cgi/content/full/76/910/690

I hope some of this helps. Personally, I found that the more I learned, the better and more confident I felt - maybe some of these links will bring you some comfort, too.

This can be a worriesome road, and it is important to have folks that you can talk to about the way you are feeling. It is ok to be frightened, and ok to be worried, and even very normal to be depressed, but it is really important that you do not let this worry 'cripple' you from seeking the very best treatments you can attain.

Please also have a talk with your family doctor/PCP about how you are feeling, Pat - they can help us alot, too. I wish you the very best.

Mommyofone
Posts: 3
Joined: Jul 2006

Pat, you and I are in the waiting zone and that is a hard place to be when we don't know whats going on. I can't believe this diseas causes so much mystery. I am a nurse and have never encountered such ignorance on any disease such as thyroid cancer. When you know what is happening I think its easier to cope. I sit here waiting for my swelling to subside from my radical neck surgery so they can do a MRI. Two of my doctors are "certain" I still have cancer somewhere although my PET is neg in the lung (but I have read that happens then its shows up on an MRI?). I would LOVE to stay in bed today too, thats just how I feel, however, my five year old has other ideas so I try to live my day without too many episodes of loosing it to the little guy who deserves none of this........ Wish we could have a good cry together. Jill

times3
Posts: 5
Joined: Jun 2006

Hi Pat,
I'm waiting too. My thyroid cancer isn't acting like it "should" and the docs are a bit confused. Don't give in to it if you can help it. Fear of the unknown can do you in and is very understandable. You should keep in touch with all of us who know your pain first hand. We all understand what you're going through and will always respond. Voice your thoughts in this safe venue. We're all in this together.

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