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Anyone have Follicuar Thyroid Cancer ???

lisa 28
Posts: 18
Joined: Oct 2009

Has the cancer spread?And where to?What treatments have you done.any advice for dealing with this cancer?

lisaonthenet
Posts: 68
Joined: Nov 2009

Hello,
My partner has follicular metastatic thyroid cancer that's spread to several locations. Is your metastatic?

Lisa

miladyx
Posts: 85
Joined: May 2009

i am sorry about your partner... how old was she/he when diagnosed? i do know it tends to spread more but i thought it usually effected older people.

lisaonthenet
Posts: 68
Joined: Nov 2009

Hello,
My partner was diagnosed in 2003 so she was 42 when she found the lump on her thyroid. I don't know about age and spread but hers first spread to her lungs and was slow growing and being 'watched'. Then suddenly it became more aggressive and metastasized to bone, liver, kidney, adrenal gland and spleen.

Lisa

BellsAngel69
Posts: 102
Joined: Dec 2009

Hi Lisa. I was 43 when I was diagnosed with well-differentiated Thyroid cancer (papillary, follicular and Hurthle cell). It had already spread to one lymph node but was non-invasive and encapsulated. I was fine for three years, then it went to my hip bone. I had surgery to remove the spot, but now my TSH has elevated from 29 to 121 since May and I feel it has spread to other part of my body, even though my last PET scan in May said I was clean. It's very scary. How is your partner doing? How are they treating her and are they keeping it in check?

Patti

lisa 28
Posts: 18
Joined: Oct 2009

I have follicular cancer.It has spread to my right hand side of my skull.I guess it is metastatic.I am waiting on my doc to do sometihng else.He wants to wait until march before he does anything else.I hate waiting!!! I am scared the cancer spread I am 28 and have 3 childaren 8,7,5.My mom died last year of lung cancer.I know this cancer spreads to major oragans.I am so stressed out I don't know what I am doing half the time.

miladyx
Posts: 85
Joined: May 2009

when you say it spread to your skull, do you know if it means to the bone? how did they conclude that? did you have any pet or ct scans? It is likely that your thyroglobulin would be quite high if it was in the bone, do you know what yours tg is at?

as you probably know there is a difference between pure follicular and follicular variant of papillary - it would be worthwhile to know which one yours is.

your doctor is probably waiting because RAI is effective upto a year.

lisa 28
Posts: 18
Joined: Oct 2009

In the letter the doctor mailed me.It said skull.But I don't think he really knows.He never told me what satge of cancer I am in.I had radtion during fall break and then had a uptake scan and they found this.He thinks he might have got it>Not for sure have to go back in march and to radtion again.I have hashimotos disease.So the doc says my test are always off.He doesn't give much input.I am getting a second opion next friday.Do you know any good doc around ky ? I am pretty sure I have follicuar cancer .Thanks

lisa 28
Posts: 18
Joined: Oct 2009

In the letter the doctor mailed me.It said skull.But I don't think he really knows.He never told me what satge of cancer I am in.I had radtion during fall break and then had a uptake scan and they found this.He thinks he might have got it>Not for sure have to go back in march and to radtion again.I have hashimotos disease.So the doc says my test are always off.He doesn't give much input.I am getting a second opion next friday.Do you know any good doc around ky ? I am pretty sure I have follicuar cancer .Thanks

lisa 28
Posts: 18
Joined: Oct 2009

In the letter the doctor mailed me.It said skull.But I don't think he really knows.He never told me what satge of cancer I am in.I had radtion during fall break and then had a uptake scan and they found this.He thinks he might have got it>Not for sure have to go back in march and to radtion again.I have hashimotos disease.So the doc says my test are always off.He doesn't give much input.I am getting a second opion next friday.Do you know any good doc around ky ? I am pretty sure I have follicuar cancer .Thanks

miladyx
Posts: 85
Joined: May 2009

I know that Dr. Kenneth Ain at University of Kentucky is one the top thyroid cancer specialists in the world... some people take his word as the bible when it comes to thyroid cancer.

He might not be taking any new patients (not sure about this), but if you call and explain your situation to him or his assistant (i believe his assistant's name is Kevin), hopefully he will refer you to somebody whom he trusts IF he cannot see you himself.

Take a look at the link that i posted below - hope it helps.
http://www.thyroidcancerdoctor.com/patients.html

lisa 28
Posts: 18
Joined: Oct 2009

I have tried to go there.They are not taking any new patience.Thamks for the advice.

lisaonthenet
Posts: 68
Joined: Nov 2009

Are you close to Ohio State University?

lisaonthenet

lisa 28
Posts: 18
Joined: Oct 2009

I live in the captial of ky. Thanks

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