Endo visit wasn't' so positive

weberdns
weberdns Member Posts: 154
edited March 2014 in Thyroid Cancer #1
Both my husband I feel like we have been run over by a truck. With the cell type being hurthle cell Carcinoma, we really have to wait to see if the radioactive iodine will be taken up by the cells. If it doesn't, then we are up the creek without a very good paddle. Of course without the body scan we are at stage 3 cancer. The tumor was unencapsulated and very vascular, so the chances that it hasn't traveled anywhere is pretty small. The endo has classified me a moderate to high risk, and I'm just losing it! I'm 49 years old....another strike against me.... I came home from the appointment and just cried. Of course she did say that perhaps we could pray and our prayers would be answered and the cells would take up the RI. I'm trying to tell my kids (age 14 and 19 that this might not work, and might not be as easy to cure as they first thought. I'm scared, wondering if this doesn't work how long I will live, and hating that this is happening to me right now.

Comments

  • tonesgurl
    tonesgurl Member Posts: 42
    #2
    Try to stay positive
    Weberdns,

    I read your post and just wanted to offer you support and prayer.I too have thyroid cancer just not the same type as you.
    Cry it out when you need to, rest when you need to, and love your family with everything in your body!
    The best thing the doctor could have advised you was to pray, pray hard.

    Take Care
    Adrian
  • sfl67
    sfl67 Member Posts: 55
    #3
    weberdns
    Hi,
    I had surgery July 09, and the pathology came back Hurtle Cell Carcinoma Stage III. It was in both lobes, parathyroid and blood vessel invasion as well. I was told my best option was a maximum dose of RAI-131 which was given Sept. 2 followed by a full body scan Sept. 14, 09. I had uptake in the thyroid and throat area. I had my first ultrasound Feb. 1, 2010. My surgeon said the surgery and ablation had done their job, there was no residual thyroid tissue remaining. I was told that radioiodine was effective less than 10% of the time with Hurthle Cell and I prayed that I would be in that less than 10%! I was told that with my age, I was 59 at the time, and the size of my tumor, that I had about a ten year life expectancy, but to be optimistic.

    Thyca.org has a good web site that addresses questions and has information about thyroid cancers. You can also find recipes for the low iodine diet before being given the radioiodine.

    We have two adult daughters, and it wasn't easy telling them the diagnosis, but I have always believed in dealing with the reality of the situation even when it is difficult. I think about this almost every waking hour, but I try to live for today and I pray always for healing and strength to accept whatever my outcome might be. I just wanted you to know that the radioiodine does work sometimes and I wish you well in the days and weeks ahead. Please keep us posted. You will be in my thoughts. Shelia
  • weberdns
    weberdns Member Posts: 154
    #4
    sfl67 said:

    weberdns
    Hi,
    I had surgery July 09, and the pathology came back Hurtle Cell Carcinoma Stage III. It was in both lobes, parathyroid and blood vessel invasion as well. I was told my best option was a maximum dose of RAI-131 which was given Sept. 2 followed by a full body scan Sept. 14, 09. I had uptake in the thyroid and throat area. I had my first ultrasound Feb. 1, 2010. My surgeon said the surgery and ablation had done their job, there was no residual thyroid tissue remaining. I was told that radioiodine was effective less than 10% of the time with Hurthle Cell and I prayed that I would be in that less than 10%! I was told that with my age, I was 59 at the time, and the size of my tumor, that I had about a ten year life expectancy, but to be optimistic.

    Thyca.org has a good web site that addresses questions and has information about thyroid cancers. You can also find recipes for the low iodine diet before being given the radioiodine.

    We have two adult daughters, and it wasn't easy telling them the diagnosis, but I have always believed in dealing with the reality of the situation even when it is difficult. I think about this almost every waking hour, but I try to live for today and I pray always for healing and strength to accept whatever my outcome might be. I just wanted you to know that the radioiodine does work sometimes and I wish you well in the days and weeks ahead. Please keep us posted. You will be in my thoughts. Shelia

    Thank you so much!!!
    Sheila! Thank you so much for your story! At this point and time I would take 10 years.....my daughter is 14 now and I need to hang around and see her grow up. I might even get to see a wedding or grandkids! I will continue to pray that I am in the 10% that it works in and that things will go well! Thank you so much for the encouragement! I do so appreciate it!
  • weberdns
    weberdns Member Posts: 154
    #5
    sfl67 said:

    weberdns
    Hi,
    I had surgery July 09, and the pathology came back Hurtle Cell Carcinoma Stage III. It was in both lobes, parathyroid and blood vessel invasion as well. I was told my best option was a maximum dose of RAI-131 which was given Sept. 2 followed by a full body scan Sept. 14, 09. I had uptake in the thyroid and throat area. I had my first ultrasound Feb. 1, 2010. My surgeon said the surgery and ablation had done their job, there was no residual thyroid tissue remaining. I was told that radioiodine was effective less than 10% of the time with Hurthle Cell and I prayed that I would be in that less than 10%! I was told that with my age, I was 59 at the time, and the size of my tumor, that I had about a ten year life expectancy, but to be optimistic.

    Thyca.org has a good web site that addresses questions and has information about thyroid cancers. You can also find recipes for the low iodine diet before being given the radioiodine.

    We have two adult daughters, and it wasn't easy telling them the diagnosis, but I have always believed in dealing with the reality of the situation even when it is difficult. I think about this almost every waking hour, but I try to live for today and I pray always for healing and strength to accept whatever my outcome might be. I just wanted you to know that the radioiodine does work sometimes and I wish you well in the days and weeks ahead. Please keep us posted. You will be in my thoughts. Shelia

    Thank you so much!!!
    Sheila! Thank you so much for your story! At this point and time I would take 10 years.....my daughter is 14 now and I need to hang around and see her grow up. I might even get to see a wedding or grandkids! I will continue to pray that I am in the 10% that it works in and that things will go well! Thank you so much for the encouragement! I do so appreciate it!
  • weberdns
    weberdns Member Posts: 154
    #6
    tonesgurl said:

    Try to stay positive
    Weberdns,

    I read your post and just wanted to offer you support and prayer.I too have thyroid cancer just not the same type as you.
    Cry it out when you need to, rest when you need to, and love your family with everything in your body!
    The best thing the doctor could have advised you was to pray, pray hard.

    Take Care
    Adrian

    Thank you Adrian!!
    Thanks for the support and the encouragemtn! It is so much appreciated!!
  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    #7
    weberdns
    You need to stay positive!!! I can't believe your endo said you only had ten years. My doctor told me I could live a normal lifespan, and it might be shortened by about 10 years. Every case is different. My kids are 19 and 16 and I plan on watching them grow and flourish and living to be an old lady who beat the odds. I'm also 49, and WILL NOT let this get the best of me. It's not always easy, you have to take one step at a time, but you can beat this!

    If you'd like to talk to me more you can email me at: rorick@frontiernet.net

    My name is Patti
  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    #8
    weberdns
    You need to stay positive!!! I can't believe your endo said you only had ten years. My doctor told me I could live a normal lifespan, and it might be shortened by about 10 years. Every case is different. My kids are 19 and 16 and I plan on watching them grow and flourish and living to be an old lady who beat the odds. I'm also 49, and WILL NOT let this get the best of me. It's not always easy, you have to take one step at a time, but you can beat this!

    If you'd like to talk to me more you can email me at: rorick@frontiernet.net

    My name is Patti
  • weberdns
    weberdns Member Posts: 154
    #9
    BellsAngel69 said:

    weberdns
    You need to stay positive!!! I can't believe your endo said you only had ten years. My doctor told me I could live a normal lifespan, and it might be shortened by about 10 years. Every case is different. My kids are 19 and 16 and I plan on watching them grow and flourish and living to be an old lady who beat the odds. I'm also 49, and WILL NOT let this get the best of me. It's not always easy, you have to take one step at a time, but you can beat this!

    If you'd like to talk to me more you can email me at: rorick@frontiernet.net

    My name is Patti

    Thanks Patti!
    I met with a financial advisor the other day, and we planned for my life to go to 99! I'm stong, tough, and fighting this cancer! Sometimes I talk to it and tell it to get ready to die.....that it is dying and not me! In fact the day I was told I held it together as I was alone that day, and one of the first words out of my mouth was that "I will not die from this cancer!" thus the start of the cancer trash talk! Actually with the type of cancer I have (Hurthle cell....stage 3 right now....if there is mets in the body scan Stage 4 ) there is a 50 - 71% chance of a 5 year cure rate. I'm planning on being one of the cured ones!
  • nevergiveup51
    nevergiveup51 Member Posts: 40
    #10
    BellsAngel69 said:

    weberdns
    You need to stay positive!!! I can't believe your endo said you only had ten years. My doctor told me I could live a normal lifespan, and it might be shortened by about 10 years. Every case is different. My kids are 19 and 16 and I plan on watching them grow and flourish and living to be an old lady who beat the odds. I'm also 49, and WILL NOT let this get the best of me. It's not always easy, you have to take one step at a time, but you can beat this!

    If you'd like to talk to me more you can email me at: rorick@frontiernet.net

    My name is Patti

    Hi Patti
    Your comment made me smile. I myself have been trying to stay positive, its hard but I am trying. On May 3rd I take my first dose (actually 7 pills - low dose) of the RAI, then scan and on May 6 my high dose (1 to 2 pills). I have children 23 and 14. I'm just so scared and always looking for someone to talk to that truly understands. I hope everyone does well. God Bless, Debby
  • weberdns
    weberdns Member Posts: 154
    #11
    nevergiveup51 said:

    Hi Patti
    Your comment made me smile. I myself have been trying to stay positive, its hard but I am trying. On May 3rd I take my first dose (actually 7 pills - low dose) of the RAI, then scan and on May 6 my high dose (1 to 2 pills). I have children 23 and 14. I'm just so scared and always looking for someone to talk to that truly understands. I hope everyone does well. God Bless, Debby

    I start RI today!!!
    1 PM appointment! I'm upbeat and plannning on a party for invited guests only...Hurthle cell Thyroid cancer cells only.....on the menu....radioactive iodine.....party plans........death to all of them! If you need someone to talk to, please let me know by posting here or my e-mail of weberdns@zoominternet.net! I'm going to be locked up for the next 10 days anyhow so feel free!

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