What is he best treatment ?

titaM
titaM Member Posts: 14
edited March 2014 in Thyroid Cancer #1
My aunt has thyroid cancer, she had breast cancer many years ago which got cured. She was diagnosed with bone cancer last year metastatic to breast. The doctor said her thyroid is not related to breast cancer. From the test results, I have read, it says follicle lymph nodes, lymphodenopathy, differential lymphoma and metastatic. I am not sure what this means, if anyone has any knowledge please let me know.
Also, they are giving her taxoter. My aunt didn't have surgery, they said it was too risky and they didn't do radioactive iodine, only the chemo was the treatment offered. She chokes and gags a little when she drinks liquids and feels short of breath. They took liquid out of ne lung and said it was fine. Her legs are very swollen and has not gotten physical therapy for it, would like some advice on anything if anybody has had any experience or adbice. We are in NJ.

If anyone knows of a doctor they recommend please let us know.
Thanks,

Comments

  • Rustifox
    Rustifox Member Posts: 110
    #2
    There is an EXCELLENT thyroid cancer specialist located in New York - Dr. R. Michael Tuttle:
    Memorial Sloan Kettering Cancer Center
    Endocrinology
    1275 York Avenue
    Box 419
    New York, NY 10021
    Phone: 212-639-6042 Fax: 212-794-5821

    Dr. Tuttle is renowned in North America for his treatment(s) of some of the most difficult thyroid cancer variants - I would definitely ask for a referral or have you Aunt's specialists consult with him on her case.

    For explanations on thyroid cancer pathology, there is info here - it is quite clinical, but may help you to better understand some of the tissue variants/behaviors:
    http://www.moffitt.usf.edu/pubs/ccj/v7n3/pdf/dept6.pdf

    If your aunt has a very aggressive variant of thyroid cancer, it is often unlikely these types will respond to radioactive iodine. By explanation, the more 'dedifferentiated' the tissues are, the less like thyroid tissues they act - and if they are not like thyroid tissues, then it is unlikely they will uptake radioactive iodine... but this should definitely be discussed with a thyroid cancer specialist - there are also more doctors sited on this page, if you look under New York:
    http://www.thyroid-cancer.net/resources/findaspec.php3

    Differential lymphoma means that it may be thyroid cancer, or may be lymphoma (search under non-hodgkins or hodgkins lymphoma for more info on this). You may also want to do a search under 'lymphedema' - there is some basic data here:
    http://www.bellisse.com/patients/lymphedema.shtml

    Hope some of this helps. I would suggest contacting a thyroid cancer specialist, though, for a consult - sometimes the more aggressive variants are mistaken for more treatable sub-types, so a review of the pathology of the lymph node biopsies may be a good idea. All the best, and I'm sorry your aunt is going through this.
  • titaM
    titaM Member Posts: 14
    #3
    Rustifox said:

    There is an EXCELLENT thyroid cancer specialist located in New York - Dr. R. Michael Tuttle:
    Memorial Sloan Kettering Cancer Center
    Endocrinology
    1275 York Avenue
    Box 419
    New York, NY 10021
    Phone: 212-639-6042 Fax: 212-794-5821

    Dr. Tuttle is renowned in North America for his treatment(s) of some of the most difficult thyroid cancer variants - I would definitely ask for a referral or have you Aunt's specialists consult with him on her case.

    For explanations on thyroid cancer pathology, there is info here - it is quite clinical, but may help you to better understand some of the tissue variants/behaviors:
    http://www.moffitt.usf.edu/pubs/ccj/v7n3/pdf/dept6.pdf

    If your aunt has a very aggressive variant of thyroid cancer, it is often unlikely these types will respond to radioactive iodine. By explanation, the more 'dedifferentiated' the tissues are, the less like thyroid tissues they act - and if they are not like thyroid tissues, then it is unlikely they will uptake radioactive iodine... but this should definitely be discussed with a thyroid cancer specialist - there are also more doctors sited on this page, if you look under New York:
    http://www.thyroid-cancer.net/resources/findaspec.php3

    Differential lymphoma means that it may be thyroid cancer, or may be lymphoma (search under non-hodgkins or hodgkins lymphoma for more info on this). You may also want to do a search under 'lymphedema' - there is some basic data here:
    http://www.bellisse.com/patients/lymphedema.shtml

    Hope some of this helps. I would suggest contacting a thyroid cancer specialist, though, for a consult - sometimes the more aggressive variants are mistaken for more treatable sub-types, so a review of the pathology of the lymph node biopsies may be a good idea. All the best, and I'm sorry your aunt is going through this.

    Thank you for the information. Are dr's. willing to consult with other dr's? My aunt is in the hospital, they say it's pneumonia. She is doing better, but her specialist is on vacation and has been so she hasn't been treated and no one knows what he wants to do. He is always on vacation and she misses her treatments because of this, his staff seems not to be very familiar with her cancer and think maybe not give her treatment, but that is the only treatment they have tried, chemo so nothing else has tried but I do believe there are other possibilities they could do. Is there any way we could take her records to Dr Tuttle, and we could transfer her there, I don't know how to talk to a new doctor because they don't usually see somebody unless it's the patient. Do you have any suggestions, I want to get my aunt better, please help me.

    Thank you

    Nannette
  • Rustifox
    Rustifox Member Posts: 110
    #4
    titaM said:

    Thank you for the information. Are dr's. willing to consult with other dr's? My aunt is in the hospital, they say it's pneumonia. She is doing better, but her specialist is on vacation and has been so she hasn't been treated and no one knows what he wants to do. He is always on vacation and she misses her treatments because of this, his staff seems not to be very familiar with her cancer and think maybe not give her treatment, but that is the only treatment they have tried, chemo so nothing else has tried but I do believe there are other possibilities they could do. Is there any way we could take her records to Dr Tuttle, and we could transfer her there, I don't know how to talk to a new doctor because they don't usually see somebody unless it's the patient. Do you have any suggestions, I want to get my aunt better, please help me.

    Thank you

    Nannette

    Nanette, any good doctor is usually willing to seek expert advice to benefit his/her patient. If they are unwilling to do so, your aunt may request complete copies of all of her files, and seek a second opinion. Sometimes these may be somewhat restricted by her insurance coverage; if she is unable to address these issues or make these decisions, herself due to the state of her health, it is possible that you may need court authorization to become her caregiver/power of attorney with these medical decisions. Try discussing these issues with the patient advocate/liason at the facility she is currently located in - but remember, in most places they will not discuss a patient's wellbeing or care issues unless legally authorized to do so. Sorry, I'm not familiar with the legal requirements in your state, but in general, health care issues are private - to be determined between the patient and his/her doctors... don't know what else to suggest, and hopefully someone else may have some ideas for you.

    One last suggestion - you might want to contact the nearest THYCA support group facilitator, and ask him/her for suggestions on doctors - you can track down the nearest group on this link:
    http://www.thyca.org/sg/local.htm

    Thyca itself is a terrific support arm for thyroid cancer patients, and others in your area may offer some great ideas for you, too. Good luck, and I do hope things work out well - your Aunt's situation is somewhat complicated, and she does need some expert advice in my opinion. Take care, and do consider getting some support for you through this process, too - when a family member gets cancer, we all get cancer, unfortunately, and it can be a huge emotional burden to carry on your shoulders, too. Big hugs sent your way.
  • titaM
    titaM Member Posts: 14
    #5
    Rustifox said:

    Nanette, any good doctor is usually willing to seek expert advice to benefit his/her patient. If they are unwilling to do so, your aunt may request complete copies of all of her files, and seek a second opinion. Sometimes these may be somewhat restricted by her insurance coverage; if she is unable to address these issues or make these decisions, herself due to the state of her health, it is possible that you may need court authorization to become her caregiver/power of attorney with these medical decisions. Try discussing these issues with the patient advocate/liason at the facility she is currently located in - but remember, in most places they will not discuss a patient's wellbeing or care issues unless legally authorized to do so. Sorry, I'm not familiar with the legal requirements in your state, but in general, health care issues are private - to be determined between the patient and his/her doctors... don't know what else to suggest, and hopefully someone else may have some ideas for you.

    One last suggestion - you might want to contact the nearest THYCA support group facilitator, and ask him/her for suggestions on doctors - you can track down the nearest group on this link:
    http://www.thyca.org/sg/local.htm

    Thyca itself is a terrific support arm for thyroid cancer patients, and others in your area may offer some great ideas for you, too. Good luck, and I do hope things work out well - your Aunt's situation is somewhat complicated, and she does need some expert advice in my opinion. Take care, and do consider getting some support for you through this process, too - when a family member gets cancer, we all get cancer, unfortunately, and it can be a huge emotional burden to carry on your shoulders, too. Big hugs sent your way.

    Thank you for your help. We gave he Dr. the name of a specialist from Sloan Kettering that was given to us by the referral specialist and her dr said that the doctor at Sloan won't talk to him that we have to call the referral and have a dr accept her. We are going to askagain her main Oncologist but they just don't want to treat her because they say there is not any other treatment for thyroid cancer. We just want her transferred to another hospital who as a thyroid cancer specialist but most dr's will take her on an outpatient basis with an appt and then they can treat her.
    I am not sure how it can be so difficult to transfer someone to a specialist or why ther doctors can't call another dr to have her transferred.

    Thank you and we appreciate all the help we can get. Thanks again.

    Nannette

Discussion Boards