breast cancer now medullary cancer

sickagain
sickagain Member Posts: 6
edited March 2014 in Thyroid Cancer #1
In June, I just finished all treatment for breast cancer. Now, I have medullary cancer. I am so scared. I went through so much and now this. Also the nodule in my thyroid is so large. I am afraid I won't survive. I just want to live a normal life.

Comments

  • veronica57
    veronica57 Member Posts: 98
    #2
    sickagain
    I can imagine what you're feeling. I'm still being treated for mestastasis to my lungs after having being with papillary carcinoma. My mother and my aunt had breast cancer. I'm scheduled for a mammogram on Monday, and I worry that they'll tell me that somethings wrong. But in the end, I always realize that God won't give us no more than we can bare. You will survive. Keep praying, and I will be praying for you too. Best wishes.
    Veronica
  • alapah
    alapah Member Posts: 287
    #3
    veronica57 said:

    sickagain
    I can imagine what you're feeling. I'm still being treated for mestastasis to my lungs after having being with papillary carcinoma. My mother and my aunt had breast cancer. I'm scheduled for a mammogram on Monday, and I worry that they'll tell me that somethings wrong. But in the end, I always realize that God won't give us no more than we can bare. You will survive. Keep praying, and I will be praying for you too. Best wishes.
    Veronica

    so hard
    Like veronica57, I have a tough case of metastasized papillary cancer - and also was dx with melanoma within a few months of finding out i had the thyroid cancer. it is really tough sometimes to stay positive and i so understand your fears and desire for normalcy and care free existence. were it that we could wish this stuff away! i don't really have answers for you but wanted to share that i feel as you do. it's scary and so uncertain. you're not alone. try to live in the moment as much as possible.
    best to you
  • sfl67
    sfl67 Member Posts: 55
    #4
    veronica57 said:

    sickagain
    I can imagine what you're feeling. I'm still being treated for mestastasis to my lungs after having being with papillary carcinoma. My mother and my aunt had breast cancer. I'm scheduled for a mammogram on Monday, and I worry that they'll tell me that somethings wrong. But in the end, I always realize that God won't give us no more than we can bare. You will survive. Keep praying, and I will be praying for you too. Best wishes.
    Veronica

    Mammogram
    Veronica,

    I saw a segment on Dr. Oz on Monday pertaining to thyroid cancers and the part he feels radiation plays in the disease that has increased so much in recent years. His suggestion was to have the thyroid area protected with a lead lined shield for both mammograms and dental x-rays. I thought you might want to research this just in case. I was interested in the segment especially because my thyroid cancer, Hurthle Cell Carcinoma, is thought to be caused primarily by radiation exposure. I have just concluded my first year follow-up with low iodine diet, thyrogen injections, low dose rai, body scan, blood work, and have borderline high levels of thyroglobulin, so it appears I might have a recurrence. I wanted to share the information about the shield just in case it might be of interest.

    Wishing you well!
    Shelia
  • sfl67
    sfl67 Member Posts: 55
    #5
    alapah said:

    so hard
    Like veronica57, I have a tough case of metastasized papillary cancer - and also was dx with melanoma within a few months of finding out i had the thyroid cancer. it is really tough sometimes to stay positive and i so understand your fears and desire for normalcy and care free existence. were it that we could wish this stuff away! i don't really have answers for you but wanted to share that i feel as you do. it's scary and so uncertain. you're not alone. try to live in the moment as much as possible.
    best to you

    alapah
    I contacted you several months ago in regard to your cancer being attached to your trachea, if you recall. My original surgeon told me mine was embedded in my throat and attached to my trachea, though nothing was advised about radiation, only a max dose of RAI. My first year follow-up indicates borderline high levels of thyroglobulin, so regardless of being told to be optimistic, I am concerned I have a recurrence. My last ultrasound showed two enlarged lymph nodes. I will see my doctor Oct. 7 to get his findings. You are the only person I have read about with the same thing I have experienced, though my cancer is Hurtle Cell Carcinoma Stage 3.

    I am sorry we are all going through the uncertainity of this diagnosis, but I appreciate the connection I feel to each through this site. I live in a rural town in the south, my doctors are 100 miles away and have limited knowledge of this cancer, it seems.

    Wishing you the best.
  • alapah
    alapah Member Posts: 287
    #6
    sfl67 said:

    alapah
    I contacted you several months ago in regard to your cancer being attached to your trachea, if you recall. My original surgeon told me mine was embedded in my throat and attached to my trachea, though nothing was advised about radiation, only a max dose of RAI. My first year follow-up indicates borderline high levels of thyroglobulin, so regardless of being told to be optimistic, I am concerned I have a recurrence. My last ultrasound showed two enlarged lymph nodes. I will see my doctor Oct. 7 to get his findings. You are the only person I have read about with the same thing I have experienced, though my cancer is Hurtle Cell Carcinoma Stage 3.

    I am sorry we are all going through the uncertainity of this diagnosis, but I appreciate the connection I feel to each through this site. I live in a rural town in the south, my doctors are 100 miles away and have limited knowledge of this cancer, it seems.

    Wishing you the best.

    i do recall
    i am glad you posted. i sometimes lose track of who's who and who is in what situation. it now looks like i have nodules in my lungs. Mayo has recommended monitoring with CTs every 6 months. not much to do for that unfortunately. some chemo drugs for other cancers are used to help slow it in lucky patients but nothing so far kills it in the lungs. the remaining thyroid tissue i have appears to not be iodine avid so they aren't suggesting any more RAI for me. i think it may also be hard for RAI to reach cells in the lungs, much like it seems to have limited effect on cells in lymph nodes. a scary turn of events but for now i feel fine physically. my breathing issues are related to my paralyzed vocal cord, not the small nodules in the lungs.

    are you getting small RAI dose to see if things light up in your neck? or a PET scan? after the external beam radiation, they monitor my trachea as best they can with ultrasounds. it's tricky though. i recently had CT/PET scans too. i have Tg antibodies so though my Tg level is quite low, it seems to be unreliable as a marker. they can't yet biopsy the nodules in the lungs.

    I hope you're well. I'll be starting a road trip this week so will be on the boards off and on when i can. If you write back and don't hear from me right away, that's why! i'll be going to see Dr. Steven Sherman at MD Anderson in mid-October. will be interesting to hear his thoughts on my case.


    keep us posted. wishing you the best as well.
  • sfl67
    sfl67 Member Posts: 55
    #7
    alapah said:

    i do recall
    i am glad you posted. i sometimes lose track of who's who and who is in what situation. it now looks like i have nodules in my lungs. Mayo has recommended monitoring with CTs every 6 months. not much to do for that unfortunately. some chemo drugs for other cancers are used to help slow it in lucky patients but nothing so far kills it in the lungs. the remaining thyroid tissue i have appears to not be iodine avid so they aren't suggesting any more RAI for me. i think it may also be hard for RAI to reach cells in the lungs, much like it seems to have limited effect on cells in lymph nodes. a scary turn of events but for now i feel fine physically. my breathing issues are related to my paralyzed vocal cord, not the small nodules in the lungs.

    are you getting small RAI dose to see if things light up in your neck? or a PET scan? after the external beam radiation, they monitor my trachea as best they can with ultrasounds. it's tricky though. i recently had CT/PET scans too. i have Tg antibodies so though my Tg level is quite low, it seems to be unreliable as a marker. they can't yet biopsy the nodules in the lungs.

    I hope you're well. I'll be starting a road trip this week so will be on the boards off and on when i can. If you write back and don't hear from me right away, that's why! i'll be going to see Dr. Steven Sherman at MD Anderson in mid-October. will be interesting to hear his thoughts on my case.


    keep us posted. wishing you the best as well.

    alapah
    Thank you for replying. You mentioned the Mayo Clinic; in my research they mention the possibility of an alcohol ablation that sometimes works for thyroid bed and lymph node involvement, in case you would like to research this, the Mayo Clinic is the only facility that offers this procedure from my understanding. I'm not sure what criteria one must meet in order to take advantage of this procedure.

    With the Hurthle Cell, I was told RAI works less than 10% of the time but that it was my only option at the time. I had only a trace dose of RAI for my first year check-up and nothing unusual showed up according to my doctor's letter, but the serum thyroglobulin is borderline high, so I am anxious to see what the doctor suggests. It has been a long three weeks.

    I wish you well on your trip to M. D. Anderson and hope you get really good news. Please let us hear when you return and feel like posting.

    Wishing you well.
  • veronica57
    veronica57 Member Posts: 98
    #8
    sfl67 said:

    Mammogram
    Veronica,

    I saw a segment on Dr. Oz on Monday pertaining to thyroid cancers and the part he feels radiation plays in the disease that has increased so much in recent years. His suggestion was to have the thyroid area protected with a lead lined shield for both mammograms and dental x-rays. I thought you might want to research this just in case. I was interested in the segment especially because my thyroid cancer, Hurthle Cell Carcinoma, is thought to be caused primarily by radiation exposure. I have just concluded my first year follow-up with low iodine diet, thyrogen injections, low dose rai, body scan, blood work, and have borderline high levels of thyroglobulin, so it appears I might have a recurrence. I wanted to share the information about the shield just in case it might be of interest.

    Wishing you well!
    Shelia

    Thank you Shelia
    I'm just getting back on the boards. I've already had the mammogram done,unfortunately. But I will remember the shield in the future. I'm wishing you the best. Stay strong.
    Veronica
  • veronica57
    veronica57 Member Posts: 98
    #9
    sfl67 said:

    Mammogram
    Veronica,

    I saw a segment on Dr. Oz on Monday pertaining to thyroid cancers and the part he feels radiation plays in the disease that has increased so much in recent years. His suggestion was to have the thyroid area protected with a lead lined shield for both mammograms and dental x-rays. I thought you might want to research this just in case. I was interested in the segment especially because my thyroid cancer, Hurthle Cell Carcinoma, is thought to be caused primarily by radiation exposure. I have just concluded my first year follow-up with low iodine diet, thyrogen injections, low dose rai, body scan, blood work, and have borderline high levels of thyroglobulin, so it appears I might have a recurrence. I wanted to share the information about the shield just in case it might be of interest.

    Wishing you well!
    Shelia

    Thank you Shelia
    I'm just getting back on the boards. I've already had the mammogram done,unfortunately. But I will remember the shield in the future. I'm wishing you the best. Stay strong.
    Veronica
  • debsub
    debsub Member Posts: 2
    #10
    alapah said:

    i do recall
    i am glad you posted. i sometimes lose track of who's who and who is in what situation. it now looks like i have nodules in my lungs. Mayo has recommended monitoring with CTs every 6 months. not much to do for that unfortunately. some chemo drugs for other cancers are used to help slow it in lucky patients but nothing so far kills it in the lungs. the remaining thyroid tissue i have appears to not be iodine avid so they aren't suggesting any more RAI for me. i think it may also be hard for RAI to reach cells in the lungs, much like it seems to have limited effect on cells in lymph nodes. a scary turn of events but for now i feel fine physically. my breathing issues are related to my paralyzed vocal cord, not the small nodules in the lungs.

    are you getting small RAI dose to see if things light up in your neck? or a PET scan? after the external beam radiation, they monitor my trachea as best they can with ultrasounds. it's tricky though. i recently had CT/PET scans too. i have Tg antibodies so though my Tg level is quite low, it seems to be unreliable as a marker. they can't yet biopsy the nodules in the lungs.

    I hope you're well. I'll be starting a road trip this week so will be on the boards off and on when i can. If you write back and don't hear from me right away, that's why! i'll be going to see Dr. Steven Sherman at MD Anderson in mid-October. will be interesting to hear his thoughts on my case.


    keep us posted. wishing you the best as well.

    Dr. Sherman
    I just consulted with Dr. Sherman at MD Anderson for my thyroid cancer and he's AWESOME and so very knowledgeable. He sat with my husband and I for about an hour 1/2 explaining everything to us. He gave us the news that with my previous RAI and whole body scan in July of this year, he saw no signs of cancer. He's sending me to the Head and Neck clinic, which I'm scheduled on Tuesday, because my voice is so hoarse. It got better after my thyroidectomy in May 2009 and then this past January it began again and hasn't stopped. I had papillary and follicular cancer in 2 of the 3 tumors on my thyroid.
    You will LOVE Dr. Sherman and I wish you the very best. Please keep me updated on what he tells you. My TGg antibodies are very low as well, thus they say there's no cancer right now so seeing that you've said they are unreliable, I'm a bit concerned. He felt 2 small nodules in my neck, one on each side of my trachea but when ultrasound was done they said no biopsy was needed. I'm probably rambling, but PLEASE PLEASE let me hear from you after your visit. God Bless You!!!

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