Metastisized Thyroid Cancer

44goldengirl
44goldengirl Member Posts: 5
edited March 2014 in Thyroid Cancer #1
In 1998, I was diagnosed with both papillary and follicular thyroid cancer after a lump was discovered on my neck. My thyroid gland was removed and I was given the follow-up I131 treatment to kill off the remaining tissue. In May 2004, it was discovered that my thyroid cancer had metasticised to the lungs. My thyroglobulin as of last week (after thyrogen shots) was 284. I had a PET Scan again in December, and the measurable tumors have grown from 3 tumors to 8 in just a year and one-half, with the biggest tumor being 1.7 cm (previously 1.1 cm) I have had 1,065 mCi of RAI-131. My last whole body scan after a 200-mCi dose suggested I no longer have uptake in the lungs, or, at the very least, the cancer is growing faster than the uptake.
I have some fairly hard questions:
1. At the current rate of growth, how long will I live (I am currently 63)?
2. Should I be concerned about the amount of radiation I have had and the potential for leukemia? If my endocrinologist suggests more RAI131, should I take it?
3. When can I expect the cancer to spread to other organs?
4. When will I start to experience pain/breathing problems.
5. Is there a database available with patients such as me that can run similar history with respective outcomes?
I am going to be having a conference with my Endocrinologist soon, but he always seems to hedge when I bring up these hard questions. Any information you can provide me to would be greatly appreciated. (Rustifox: You seem to be very knowledgeable and perhaps can help me!)

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Hello,

    You may want to consider contacting the American Cancer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day and can assist you with your questions. They can be reached at 1-800-227-2345.

    Take care and be well,

    Dana
  • tonnabeth
    tonnabeth Member Posts: 2
    #3
    Golden Girl,
    I can't answer your questions but just wanted to say God Bless You.
  • charh20
    charh20 Member Posts: 5
    #4
    Hi Golden girl!!!
    I read your message and I wanted to reply to you. I have never been in this chat room or any other chat room for that matter. But I felt that I had to tell you this. I have had thyroid cancer since the age of 16. I am now 49 years old on February 9th. When they did my first operation it took them 18 hours in Birmingham Al. I had my thyroid completely removed along with jugular vains and 88 cancerous lymph nodes. I have an awesome scar,,,lol,,,as you can imagine,,,that goes from ear to ear. In 1992 I also discovered that my thyroid cancer metasticised to my lungs. Completely covered both of them. I went to M.D.Anderson and they isolated me and gave me a high dose. I did that for 5 years. You WILL live. But you do need a treatment. You will get better. Right now I am still doing scans and my medicine is in my refidgerator as we speak, ready for the injections to begin Monday. If you wish to talk to me please do. I will listen. You will survive all of this. charh20
  • ErinMom8
    ErinMom8 Member Posts: 6
    #5
    charh20 said:

    Hi Golden girl!!!
    I read your message and I wanted to reply to you. I have never been in this chat room or any other chat room for that matter. But I felt that I had to tell you this. I have had thyroid cancer since the age of 16. I am now 49 years old on February 9th. When they did my first operation it took them 18 hours in Birmingham Al. I had my thyroid completely removed along with jugular vains and 88 cancerous lymph nodes. I have an awesome scar,,,lol,,,as you can imagine,,,that goes from ear to ear. In 1992 I also discovered that my thyroid cancer metasticised to my lungs. Completely covered both of them. I went to M.D.Anderson and they isolated me and gave me a high dose. I did that for 5 years. You WILL live. But you do need a treatment. You will get better. Right now I am still doing scans and my medicine is in my refidgerator as we speak, ready for the injections to begin Monday. If you wish to talk to me please do. I will listen. You will survive all of this. charh20

    I read your comment to golden girl. My daughter only 21, who lives with me, was just diagnosed with thyroid cancer. Since then it has become more serious as we were told it is in her chest also. They say it is either laying on major blood supply or wrapped around it. Reading your message brought a tear to my eye and some hope. I am so scared to loose my daughter. Her 2 year old son needs her and I need her. She will have her thyroid taken out April 17 followed by a thoracic surgeon who wants to try and see what he can do. I am trying to be so strong for her, but when I am not around her I am falling apart quite often. Thank you for sharing your story.
  • anna g
    anna g Member Posts: 3
    #6
    Hi 44goldengirl,
    Please tell
    Hi 44goldengirl,

    Please tell me how you are doing these days? My mother has had a progression similar to yours.

    Thanks.
  • jcvolt
    jcvolt Member Posts: 69
    #7
    I hope
    I hope you are seeing an oncologist not just an endo!
  • Dasein
    Dasein Member Posts: 8
    #8
    Sorry to hear....
    Sorry to hear of your reoccurrence. I definitely would see an oncologist ASAP. I'm undergoing my first RAI course at this moment and if the scan on This Friday comes back as the cancer having spread, I'm petitioning my HMO to hook me up with a specialist. There may be a lot of things the oncologist can do for you that the endo cannot. I hope you are better and on your way to wellness. Best to you.
  • Jude0211
    Jude0211 Member Posts: 2
    #9
    Metastisized thyroid cancer
    Hi goldengirl... I am a 16yr survivor of follicular thyroid cancer with bone mets found at time of dx in 93. I've had 3 doses of radiation totaling a little over a 1,000 mcis. Have you visited www.thyca.org? Qutie a lot of info there. My story is quite long but I can tell you that after 16yrs although Im not cancer-free I am considered "clinically stable" for the past 14yrs. Feel free to email me anytime. Jude0211@comcast.net Good luck to you.

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