Metastasized 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 2001, my thyroglobulin was 6.6 and I was given another I131 treatment. Since 2001, my thyroglobulin continued to increase (it hovers in the 20s, 30s and 40s). Body scans show the thyroid cancer has metastasized to my lungs, with multiple lesions in both lungs (the largest lesion a year ago was 7 mm. Altogether, I have had 955 mCi (400 this year) of radioactive iodine treatments but my thyroglobulin is still in the 30s.

My endocrinologist believes the cancer is growing faster than the I131 is killing it, thus the increase in radiation. Unfortunately, it appears this has not worked, so I have a consultation with him at the end of January. In the past, he has told me surgery is too risky. He said that external beam radiotherapy would be even riskier than surgery in that it beams in on a particular spot in an attempt to kill cancer. Since I have multiple spots, the damage to the lungs would be extreme.

Is there anyone who is familiar with or has had a similar condition? If so, how was it treated; what is the prognosis. I am concerned about the amount of radiation I have had and the potential for leukemia; I am also concerned about the possibility of the cancer spreading beyond my lungs to other organs.

Any information you can provide me to prepare me to question my endocrinologist would be greatly appreciated.

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • kandi
    kandi Member Posts: 3
    #3
    I am new to the thyroid cancer diagnosis and treatment, and even newer to the discussion board, but I came across your message today and I felt compelled to write to you. Surely by now you have met with your endocrinologist and he has made his recommendations, have you seen an oncologist? Perhaps you will need some other form of chemotherapy and that will shrink the lesions in your lungs?

    I will pray for you and for knowledge for your doctors. Be strong and think positive! kandi
  • jgigglebox
    jgigglebox Member Posts: 2
    #4
    Wow you sound almost exactly like me. I was diagnosed in 2001 at 22yrs old with papillary carcinoma in my thyroid. I had I131 that same year, also in 2002. Then in 2003 I had to have a radical neck dissection because my cancer spread. In 2004 I131 again, and after my scans that year he also said mine had spread to my lungs but that it was not too bad YET... Well here I am in 2005 and having I131 next month again and am pretty scared to see where it has moved. If it has spread even more in my lungs I dont know what treatment I will have either. They say suregery is too risky and radiation beam will be more harmful also. They did not recommend chemotherapy to me either. I was just browsing and thought it would be nice to talk to someone who was going through exactly the same thing as me. Wonder what your doc's recommended to you. Hope to hear from you.
  • gwenevere
    gwenevere Member Posts: 1
    #5
    jgigglebox said:

    Wow you sound almost exactly like me. I was diagnosed in 2001 at 22yrs old with papillary carcinoma in my thyroid. I had I131 that same year, also in 2002. Then in 2003 I had to have a radical neck dissection because my cancer spread. In 2004 I131 again, and after my scans that year he also said mine had spread to my lungs but that it was not too bad YET... Well here I am in 2005 and having I131 next month again and am pretty scared to see where it has moved. If it has spread even more in my lungs I dont know what treatment I will have either. They say suregery is too risky and radiation beam will be more harmful also. They did not recommend chemotherapy to me either. I was just browsing and thought it would be nice to talk to someone who was going through exactly the same thing as me. Wonder what your doc's recommended to you. Hope to hear from you.

    Hi...I was diagnosed with 7mm of papillary cancer in 2001...but I didn't get radioctive iodine at that time. I only had a right lobectomy. Then I had an enlarged lymph node in 2003..so I told my doctor..expected him to get back to me if there was anything but he didn't...needless to say...I got married and moved to Washington state where I learned in 2004 that I had lung mets. I had a radical neck disection in Sept. and my first dose of I131. I could only handle a low dose but my body keeps it in longer than most. They said I may only have 5 to 10 years...but I will be finding out on Tuesday how the I131 has done in my lungs. It is a very scary thing...especially cause my mother-in-law just passed from breast cancer and my husband is deployed and is unable to be by my side. It's a scary thing but I have faith. I will be praying for your situation and let me know if you find out anything new. Oh I am 21 now :) Respond if you'd like.
  • 44goldengirl
    44goldengirl Member Posts: 5
    #6
    jgigglebox said:

    Wow you sound almost exactly like me. I was diagnosed in 2001 at 22yrs old with papillary carcinoma in my thyroid. I had I131 that same year, also in 2002. Then in 2003 I had to have a radical neck dissection because my cancer spread. In 2004 I131 again, and after my scans that year he also said mine had spread to my lungs but that it was not too bad YET... Well here I am in 2005 and having I131 next month again and am pretty scared to see where it has moved. If it has spread even more in my lungs I dont know what treatment I will have either. They say suregery is too risky and radiation beam will be more harmful also. They did not recommend chemotherapy to me either. I was just browsing and thought it would be nice to talk to someone who was going through exactly the same thing as me. Wonder what your doc's recommended to you. Hope to hear from you.

    jgigglebox: You replied to my e-mail in March of 2005; unfortunately I just found your reply. (briefly, my thyroid cancer has metastasized to my lungs and I have had over 1,000 mci of radiation). It is now 3 years later and I am still battling this disease.

    How are you doing after you had your I131? I am no longer responding to that treatment. I get PET Scans every 6-12 months and, indeed, the cancer is growing (I now have eight visible tumors on my lungs (>1.7)) I have a conference call with my endocrinologist tomorrow, but I expect it will be the same old thing--we will just keep watching it grow! I just want to know of I am facing pain/death anytime in the near future (don't we all!)

    We do have very similar situation, so would appreciate hearing from you if you get this.
  • 44goldengirl
    44goldengirl Member Posts: 5
    #7
    gwenevere said:

    Hi...I was diagnosed with 7mm of papillary cancer in 2001...but I didn't get radioctive iodine at that time. I only had a right lobectomy. Then I had an enlarged lymph node in 2003..so I told my doctor..expected him to get back to me if there was anything but he didn't...needless to say...I got married and moved to Washington state where I learned in 2004 that I had lung mets. I had a radical neck disection in Sept. and my first dose of I131. I could only handle a low dose but my body keeps it in longer than most. They said I may only have 5 to 10 years...but I will be finding out on Tuesday how the I131 has done in my lungs. It is a very scary thing...especially cause my mother-in-law just passed from breast cancer and my husband is deployed and is unable to be by my side. It's a scary thing but I have faith. I will be praying for your situation and let me know if you find out anything new. Oh I am 21 now :) Respond if you'd like.

    gwenevere: Please refer to my long-overdue response to jgiggle for background on my situation.

    I'm sorry I didn't get back to you, as I stopped looking for replies after a month. How are you doing? Have you responded to I131. I would love to hear from you so we can share our latest experiences.

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