Anyone have Follicuar Thyroid Cancer ???

lisa 28
lisa 28 Member Posts: 18
edited March 2014 in Thyroid Cancer #1
Has the cancer spread?And where to?What treatments have you done.any advice for dealing with this cancer?

Comments

  • lisaonthenet
    lisaonthenet Member Posts: 69
    #2
    Follicular
    Hello,
    My partner has follicular metastatic thyroid cancer that's spread to several locations. Is your metastatic?

    Lisa
  • miladyx
    miladyx Member Posts: 85
    #3
    lisaonthenet said:

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

    Lisa

    hi lisa...
    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
    lisaonthenet Member Posts: 69
    #4
    miladyx said:

    hi lisa...
    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.

    hi miladyx
    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
  • lisa 28
    lisa 28 Member Posts: 18
    #5
    lisaonthenet said:

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

    Lisa

    follicular
    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
    miladyx Member Posts: 85
    #6
    lisa 28 said:

    follicular
    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.

    hi lisa
    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
    lisa 28 Member Posts: 18
    #7
    miladyx said:

    hi lisa
    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.

    Miladyx
    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
    lisa 28 Member Posts: 18
    #8
    miladyx said:

    hi lisa
    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.

    Miladyx
    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
    lisa 28 Member Posts: 18
    #9
    miladyx said:

    hi lisa
    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.

    Miladyx
    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
    miladyx Member Posts: 85
    #10
    lisa 28 said:

    Miladyx
    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

    i am not in the KY area, but
    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
    lisa 28 Member Posts: 18
    #11
    miladyx said:

    i am not in the KY area, but
    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

    Thanks for the advice
    I have tried to go there.They are not taking any new patience.Thamks for the advice.
  • lisaonthenet
    lisaonthenet Member Posts: 69
    #12
    lisa 28 said:

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

    What about Ohio State University
    Are you close to Ohio State University?

    lisaonthenet
  • lisa 28
    lisa 28 Member Posts: 18
    #13
    lisaonthenet said:

    What about Ohio State University
    Are you close to Ohio State University?

    lisaonthenet

    ohio area ?
    I live in the captial of ky. Thanks
  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    #14
    lisaonthenet said:

    hi miladyx
    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

    Metastatic Well-differentiated Thyroid cancer
    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

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