Thyroid cancer...need someone who understands

[Abby515]

I am just looking for people who understand what it is like to have a thyroid disorder. I am sure others have encountered family and friends who just do not understand how awful it can make a person feel.

I had a TT and RAI 14 years ago. In October last year I had a recurrence that I have had a cery difficult time getting rid of. I had RAI (which did not help this time around), external beam radiation, and off Synthroid in November following an ultrasound. I had a PET/CT scan done in April and I still have more nodules...in fact, the PET scan reads "The study demonstrates marked uptake throughout the supraclavicular regions and at multiple foci in the neck. This uptake is seen even in the extraocular area". In other words, I have no idea what I will have to do now.

I was referred in October to an oncologist and a university based hospital.

I had a TSH test done at the end of April and it was .07 and I feel miserable most days...exhausted, pain.. However, the problem is that the people who are aware of the problems I am having do not understand. I look healthy so when I try to explain how I am feeling they just seem to dismiss it.

I hope there is someone that uses this board who will understand.

[ChitChatNine]

Thanks for replying ...  how are you doing?  How are your sisters doing?  C~

[utahmomma]

I am so sorry for all you are going through.  It's so difficult when people look at you and don't see anything wrong so they don't understand all you are going through.  Just because our hair doesn't fall out or we aren't spending considerable time having chemo doesn't mean it isn't cancer and that we feel like cr@p!

Since your papillary carcinoma is now resistant to iodine uptake, are the suggesting that it is not an anaplastic type or just iodine-resistant papillary?  I know that external beam radiation is supposed to be effective on iodine-resistant thyroid cancers but it does sound like yours may be spread in so many places that radiation may be ineffective.   However, if it is absorbing glucose (so it shows on a PET scan) it should also absorb standard chemotherapy.  Are you consulting a *GOOD* oncologist?  This is beyond an endocrinologist unless your endo is an endo/oncologist.

I know that my sister will be in the same boat as you if she has another recurrence (she's had three RAI doses and they figure that any recurrence will be iodine-resistant) and that I may be there too within a few years.   While none of us are exactly in your shoes we can understand.

You have friends here who understand!!!

Utahmomma
papillary carcinoma '03
recurrence and RAI '06 and probably '08
three sisters with papillary carcinoma (one with three RAI doses and spread to breast)

[nissah46]

How did they find the recurrence, was it through Tg test or on a scan?  Have you had annual scans since your TT  14 years ago. Hope your family and friends will  be more supportive. Good luck
trish

[Abby515]

I had Papillary and the recurrence has caused a lot of problems. Despite RAI, and external radiation I still have uptake on the PET scan that cannot be treated with RAI again because it will not help so there is no point. My TSH has usually been about .39 but it may be lower because of all of the tests, including PET/CT and radiation.

[ChitChatNine]

There are many here who really understand where you are at right now. WELCOME to this fabulous community.

What type of Cancer was diagnosed?  

It is tough when they look @ you and see healthy but inside you are dragging and in pain.

What has your TSH been all along all these years?  The same?  Has it changed?  Maybe even though it is optimal for Ca supression it isn't right dosing for your quality of life but that is a fine balancing act.

I had micro's found last yr.  On Synthroid and feel pretty good most of the time but I hear you loud and clear.

Maybe a 2n opinion?

Cheryl