papillary thryoid cancer

envoy646
envoy646 Member Posts: 8
edited March 2014 in Thyroid Cancer #1
Hi,
I just found out a few days ago that I had papillary thyroid cancer and I was and still
very scared... I have read so much infomation on this type of cancer, down to survival rates, RAI, and if it comes back. I have a docs appt march 3 but i am very scared and just knowing the test that I will have to go thru and the results coming back worry me so much. I have a great support system but everyday my life changes with ups and downs. I just want to know that I am goning to be ok and live a productive life thereafter. Any feedback
«1

Comments

  • IowaBo
    IowaBo Member Posts: 32
    #2
    Hi, I too have Papillary
    Hi, I too have Papillary Cancer. It is scary and even though everyone says it's very treatable you have every right to feel as you do.I had RAI treatment last Wednesday. I go for my body scan tomorrow. I'm pretty new to all of this, but I am surrounded by supportive people and try to live one day at a time. We both have a great chance at living a long healthy life after all of this. My doctor says 99% of people with this cancer are alive ten years later and that the 1% that aren't probably died of something else. Keep thinking positively, but if you need to cry on someone's shoulder DO!!! It's ok.
  • envoy646
    envoy646 Member Posts: 8
    #3
    IowaBo said:

    Hi, I too have Papillary
    Hi, I too have Papillary Cancer. It is scary and even though everyone says it's very treatable you have every right to feel as you do.I had RAI treatment last Wednesday. I go for my body scan tomorrow. I'm pretty new to all of this, but I am surrounded by supportive people and try to live one day at a time. We both have a great chance at living a long healthy life after all of this. My doctor says 99% of people with this cancer are alive ten years later and that the 1% that aren't probably died of something else. Keep thinking positively, but if you need to cry on someone's shoulder DO!!! It's ok.

    Hi, Iowobo
    It's hard and I
    Hi, Iowobo
    It's hard and I try not cry, but this is something that I know for the rest of my life I am goning to have to deal with. I am glad to know thru this website there are so many people who have positive outcomes. I am very new just diagnoised a few days ago. My next appt is next week. I have read all I can on this and it seems to be very curable. I have so many questions and I just hope and pray that all goes in my favor... Thanks for responding.. Have you had surgeroy at this point? I don't know the steps so I apologize if I ask something crazy.
  • IowaBo
    IowaBo Member Posts: 32
    #4
    envoy646 said:

    Hi, Iowobo
    It's hard and I
    Hi, Iowobo
    It's hard and I try not cry, but this is something that I know for the rest of my life I am goning to have to deal with. I am glad to know thru this website there are so many people who have positive outcomes. I am very new just diagnoised a few days ago. My next appt is next week. I have read all I can on this and it seems to be very curable. I have so many questions and I just hope and pray that all goes in my favor... Thanks for responding.. Have you had surgeroy at this point? I don't know the steps so I apologize if I ask something crazy.

    I have had 2 surgeries.
    I have had 2 surgeries. December 9th was the first one. The initial pathology during that surgery was benign, so the doctor only remover the right side of my thyroid. I thought I was good to go. The final path report showed to cancer spots so I had to go back in for another surgery on December 30th to remove the rest. That was hard, but I recovered fairly quickly. They didn't put me on replacement thyroid meds until I saw the endocrinologist on Jan. 13th. That doc said now they think it's best to start Synthroid right after surgery. She says it prevents your body from trying to make more hormone and increase the chance of more cancer cells being developed , so you should discuss this with your surgeon. I'm new as well, but a bit ahead of you. Ask anything you want. I'll answer if I can. I'll pray with you!!! God is good!!!!
  • amie
    amie Member Posts: 6
    #5
    IowaBo said:

    Hi, I too have Papillary
    Hi, I too have Papillary Cancer. It is scary and even though everyone says it's very treatable you have every right to feel as you do.I had RAI treatment last Wednesday. I go for my body scan tomorrow. I'm pretty new to all of this, but I am surrounded by supportive people and try to live one day at a time. We both have a great chance at living a long healthy life after all of this. My doctor says 99% of people with this cancer are alive ten years later and that the 1% that aren't probably died of something else. Keep thinking positively, but if you need to cry on someone's shoulder DO!!! It's ok.

    hi
    i have papillary ca too.. my surgey is done.. all i have to go through is RAI.. please you tell me guys wht to prepare before the session.. thannk you
  • amie
    amie Member Posts: 6
    #6
    IowaBo said:

    Hi, I too have Papillary
    Hi, I too have Papillary Cancer. It is scary and even though everyone says it's very treatable you have every right to feel as you do.I had RAI treatment last Wednesday. I go for my body scan tomorrow. I'm pretty new to all of this, but I am surrounded by supportive people and try to live one day at a time. We both have a great chance at living a long healthy life after all of this. My doctor says 99% of people with this cancer are alive ten years later and that the 1% that aren't probably died of something else. Keep thinking positively, but if you need to cry on someone's shoulder DO!!! It's ok.

    hi
    i have papillary ca too.. my surgey is done.. all i have to go through is RAI.. please you tell me guys wht to prepare before the session.. thannk you
  • amie
    amie Member Posts: 6
    #7
    IowaBo said:

    Hi, I too have Papillary
    Hi, I too have Papillary Cancer. It is scary and even though everyone says it's very treatable you have every right to feel as you do.I had RAI treatment last Wednesday. I go for my body scan tomorrow. I'm pretty new to all of this, but I am surrounded by supportive people and try to live one day at a time. We both have a great chance at living a long healthy life after all of this. My doctor says 99% of people with this cancer are alive ten years later and that the 1% that aren't probably died of something else. Keep thinking positively, but if you need to cry on someone's shoulder DO!!! It's ok.

    hi
    hi lowabo,,
    how are you after having RAI? me.. i have to undergo RAI next month my endo told me so.. but i dont really have the idea wht to do beforehand.. please do let me know waht yo did before habing RAI so i might have the idea .. what did you feel now?you ok? wahts the complication?im 23 female..hope to get to know you here.. glad i found thank you
  • amie
    amie Member Posts: 6
    #8
    IowaBo said:

    I have had 2 surgeries.
    I have had 2 surgeries. December 9th was the first one. The initial pathology during that surgery was benign, so the doctor only remover the right side of my thyroid. I thought I was good to go. The final path report showed to cancer spots so I had to go back in for another surgery on December 30th to remove the rest. That was hard, but I recovered fairly quickly. They didn't put me on replacement thyroid meds until I saw the endocrinologist on Jan. 13th. That doc said now they think it's best to start Synthroid right after surgery. She says it prevents your body from trying to make more hormone and increase the chance of more cancer cells being developed , so you should discuss this with your surgeon. I'm new as well, but a bit ahead of you. Ask anything you want. I'll answer if I can. I'll pray with you!!! God is good!!!!

    hi
    lowabo please add me.. thank you
  • envoy646
    envoy646 Member Posts: 8
    #9
    IowaBo said:

    I have had 2 surgeries.
    I have had 2 surgeries. December 9th was the first one. The initial pathology during that surgery was benign, so the doctor only remover the right side of my thyroid. I thought I was good to go. The final path report showed to cancer spots so I had to go back in for another surgery on December 30th to remove the rest. That was hard, but I recovered fairly quickly. They didn't put me on replacement thyroid meds until I saw the endocrinologist on Jan. 13th. That doc said now they think it's best to start Synthroid right after surgery. She says it prevents your body from trying to make more hormone and increase the chance of more cancer cells being developed , so you should discuss this with your surgeon. I'm new as well, but a bit ahead of you. Ask anything you want. I'll answer if I can. I'll pray with you!!! God is good!!!!

    Hi Iowabo,Thank you so much
    Hi Iowabo,
    Thank you so much for the infomation. Honestly I am so overwhelemd and confused.
    I am being told that it's one nodule 2.1cm. They set me up with the onocolgist who told me
    I don't have to see her but an endo. which I go next week to see. I have my questions
    written down (so many of them). I am 39 and I understand some things because I have
    gone onto the internet to read up about it. I have many worries and concerns which
    most of us do. but I am allowing GOD to step in. I thank u so much for just talking
    directly to me because I feel better knowing I am not alone. PLEASE continue to pray
    for me as I will do for you. and I will let you know how things go as I follow my
    lead with this NEW life...... thank u.
  • envoy646
    envoy646 Member Posts: 8
    #10
    IowaBo said:

    Hi, I too have Papillary
    Hi, I too have Papillary Cancer. It is scary and even though everyone says it's very treatable you have every right to feel as you do.I had RAI treatment last Wednesday. I go for my body scan tomorrow. I'm pretty new to all of this, but I am surrounded by supportive people and try to live one day at a time. We both have a great chance at living a long healthy life after all of this. My doctor says 99% of people with this cancer are alive ten years later and that the 1% that aren't probably died of something else. Keep thinking positively, but if you need to cry on someone's shoulder DO!!! It's ok.

    Hi may I provide you with my
    Hi may I provide you with my email. (envoy646@aol.com) thanks
  • IowaBo
    IowaBo Member Posts: 32
    #11
    envoy646 said:

    Hi Iowabo,Thank you so much
    Hi Iowabo,
    Thank you so much for the infomation. Honestly I am so overwhelemd and confused.
    I am being told that it's one nodule 2.1cm. They set me up with the onocolgist who told me
    I don't have to see her but an endo. which I go next week to see. I have my questions
    written down (so many of them). I am 39 and I understand some things because I have
    gone onto the internet to read up about it. I have many worries and concerns which
    most of us do. but I am allowing GOD to step in. I thank u so much for just talking
    directly to me because I feel better knowing I am not alone. PLEASE continue to pray
    for me as I will do for you. and I will let you know how things go as I follow my
    lead with this NEW life...... thank u.

    It is best to write down
    It is best to write down questions. I could never remember all of them if I didn't. I also had my best friend go with me to all of my appointments. She wrote down everything so I could just concentrate on listening to the Dr. and ask questions.
    Thank-You so much for your prayers. I will definitely continue praying for you.
    About GOD..... I have always considered my self a christian, but I wasn't letting HIM lead me. I thought I was doing a pretty good job handling stuff on my own. I was wrong!!!! Please do let him lead you. There is a reason for everything. We do not need to know what the plan is, just trust in him to take care of us.
  • IowaBo
    IowaBo Member Posts: 32
    #12
    amie said:

    hi
    hi lowabo,,
    how are you after having RAI? me.. i have to undergo RAI next month my endo told me so.. but i dont really have the idea wht to do beforehand.. please do let me know waht yo did before habing RAI so i might have the idea .. what did you feel now?you ok? wahts the complication?im 23 female..hope to get to know you here.. glad i found thank you

    Hi,
    You have to do the low
    Hi,
    You have to do the low iodine diet for 2 weeks before your RAI. You can get a lot of recipes and information on Thyca.org. Stock up on distilled water or filtered bottled water with no salt. Best Choice brand has one. Not spring water. You will need disposable plates and utensils. for when you are isolated. I feel good now. I itched and was a bit nauseated. but it didn't last long. I am 45 and female as well. My endocrinologist said no complications. I was concerned about getting cancer somewhere else from the radiation, but she said that was not a worry. She of course couldn't guarantee that I won't get another cancer, but not from this radiation. More risk not to make sure the Thyroid cancer is gone. I am so glad I can help in any way. I am sorry we have to go through this and especially you at such a young age. Anything I can answer I will.
  • envoy646
    envoy646 Member Posts: 8
    #13
    IowaBo said:

    Hi,
    You have to do the low
    Hi,
    You have to do the low iodine diet for 2 weeks before your RAI. You can get a lot of recipes and information on Thyca.org. Stock up on distilled water or filtered bottled water with no salt. Best Choice brand has one. Not spring water. You will need disposable plates and utensils. for when you are isolated. I feel good now. I itched and was a bit nauseated. but it didn't last long. I am 45 and female as well. My endocrinologist said no complications. I was concerned about getting cancer somewhere else from the radiation, but she said that was not a worry. She of course couldn't guarantee that I won't get another cancer, but not from this radiation. More risk not to make sure the Thyroid cancer is gone. I am so glad I can help in any way. I am sorry we have to go through this and especially you at such a young age. Anything I can answer I will.

    Hi iowabo,
    thanks so much
    Hi iowabo,
    thanks so much for your words again. It is ref.reshing to know that someone really understands you and truly understands your state of mind. I am 39 with 2 teenagers
    which to me was easy to talk to than anyone else. LOL I had an appointment today
    with my ENT who scheduled me for march 16 for the surgeroy. Total remvoal was
    what he suggested. He made me feel comfortable too comfortable actually because
    hearing cancer was taken so lightly. However I trust in GOD to lead me through
    and it's not my battle for it is his. I will keep you posted with my trail of a
    new life in hopes you keep me in your prayers as I WILL do the same for you.
    thanks for listening. by the way I did have my LIST of ?ns prepared for the
    ENT until he laughed.... This network is the best.
  • dubby88
    dubby88 Member Posts: 15
    #14
    I too had papillary cancer
    I just had surgery on the 12 of February. I had a FNA done back in July and they said no cancer. I also had a large bone spur on my neck at c6 and c7. So I have to wait until both doctors could schedule me at the same time. Anyway surgery is done and the report came back as papillary cancer. I dont know yet if I have to have this RAI or not it was small but I still worry one little cell got loose and will land somewhere else. I'm a 61 year old woman so when they say people can live 10 years after surgery chances are I might not live another ten years anyway.
    I go to the surgeon on the 17 I dont know if this is where I find out if I need to do the RAI or if I might have to go back to the Endo doctor or not.

    Thanks for reading.
    Donna
  • loispol1
    loispol1 Member Posts: 84
    #15
    dubby88 said:

    I too had papillary cancer
    I just had surgery on the 12 of February. I had a FNA done back in July and they said no cancer. I also had a large bone spur on my neck at c6 and c7. So I have to wait until both doctors could schedule me at the same time. Anyway surgery is done and the report came back as papillary cancer. I dont know yet if I have to have this RAI or not it was small but I still worry one little cell got loose and will land somewhere else. I'm a 61 year old woman so when they say people can live 10 years after surgery chances are I might not live another ten years anyway.
    I go to the surgeon on the 17 I dont know if this is where I find out if I need to do the RAI or if I might have to go back to the Endo doctor or not.

    Thanks for reading.
    Donna

    Hi Donna
    You had both surgeries done at the same time? I have a badly herniated disc at C-5-6 and another at C4-5. One at C5-6 (vry bad) is touching the spinal cord. I didn't know they could do the surgery for both at the same time? I am scheduled for TT April 9, and have always wondered could they be taking care of both at same time.

    I hope all goes well with your visit on the 17th and you are in the clear. Did you have a spinal fusion also? Please stay in touch. I am so very afraid of the surgery I am having second thoughts, as I am so very allergic to medications (severely). Maybe I am one of the 15-30% that has a beign hurthle cell tumor?

    We are around the same age, I am 59 and hope to live as long as my parents and grandparent did, well into the their '90's! Keep your chin up! My parents both had cancer, breast and prostrate and survived well beyond that!
  • dubby88
    dubby88 Member Posts: 15
    #16
    loispol1 said:

    Hi Donna
    You had both surgeries done at the same time? I have a badly herniated disc at C-5-6 and another at C4-5. One at C5-6 (vry bad) is touching the spinal cord. I didn't know they could do the surgery for both at the same time? I am scheduled for TT April 9, and have always wondered could they be taking care of both at same time.

    I hope all goes well with your visit on the 17th and you are in the clear. Did you have a spinal fusion also? Please stay in touch. I am so very afraid of the surgery I am having second thoughts, as I am so very allergic to medications (severely). Maybe I am one of the 15-30% that has a beign hurthle cell tumor?

    We are around the same age, I am 59 and hope to live as long as my parents and grandparent did, well into the their '90's! Keep your chin up! My parents both had cancer, breast and prostrate and survived well beyond that!

    both done at the same time
    Yes both doctors set it up to do at the same time, The thyroid was taken out first and then the neuro. came in and did his thing and then my surgeon came back and closed me up. It work out fine. Neither one of my surgeons had done that before either. It can be done!!
    I dint have a fusion at this time doctor just grounded the spur off and hopes that will work althrough they warned me it could come back then we would have to fuse it.
    Both my parents died in thier 70's my mom had just turned 70 on the 8 th of November and died on the 30th of November. She been gone 12 years now.I sure wish she was here now to talk to. Everybody I talk to says it just thyroid cancer you are cured they got it all.

    Please dont be scared about the surgery. The surgery it self is the easy part.
    Yes I will keep in touch with you I want to know whats up with you.

    Your new friend
    Donna
  • loispol1
    loispol1 Member Posts: 84
    #17
    dubby88 said:

    both done at the same time
    Yes both doctors set it up to do at the same time, The thyroid was taken out first and then the neuro. came in and did his thing and then my surgeon came back and closed me up. It work out fine. Neither one of my surgeons had done that before either. It can be done!!
    I dint have a fusion at this time doctor just grounded the spur off and hopes that will work althrough they warned me it could come back then we would have to fuse it.
    Both my parents died in thier 70's my mom had just turned 70 on the 8 th of November and died on the 30th of November. She been gone 12 years now.I sure wish she was here now to talk to. Everybody I talk to says it just thyroid cancer you are cured they got it all.

    Please dont be scared about the surgery. The surgery it self is the easy part.
    Yes I will keep in touch with you I want to know whats up with you.

    Your new friend
    Donna

    Hi Donna, New Friend!
    I managed to finally get in touch with one of the nurse anesthetist that does all the work up for pre-op. She will review all my allergy info. and let me know what other "induction anesthesia" they could use. Then, I will fax that to the allergist and hopefully he will be able to order the products for skin testing and get me in quickly, hopefully as the surgery is April 9 and I would want the testing finished before the preop appointments the week before. There is so much involved in all this, I was ready to give up yesterday. I don't want the surgery without any testing (not that it really tells anything 100%). We will see. For me, I am sure the surgery will be the worst of it. I am allergic to iodine and radiological dyes etc. also. So I don't know if I will have any follow up treatments if I have Hurthle cell carcinoma. Part of me wants to forgo the surgery, as they won't know until afterwards, if I actually had cancer. There is a percentage/chance is not cancerous. Still there is so little information out there, hard to tell if a Hurthle cell adenoma would turn into a malignant one in time? I also have over 8 other nodules in my thyroid, and Hasimotos so I am a candidate for surgery...see how my mind is going back and forth? And there is the lump in the front sticking out of my neck below the Adams apple-one of the nodules.
    My parents are gone also and I really don't have anyone to talk to about this as I am single. Sorry you mom passed, and she is not here to help you through this. She was too young when she passed!
    I need the whole disc repaired as it is sticking into/touching my spinal cord, which is another thing that could go wrong if they put too much pressure on my disc during the surgery...worry, worry, worry, wart that is me right now! I hope the spur removal works for you and you don't have to have more surgery. If I can get through this one, I have the cervical spine C5-6 with bone sour repair surgery.

    What type of thyroid cancer did you have? Are you going to have any treatments or scans?
  • radeohed
    radeohed Member Posts: 5
    #18
    newly diagnosed. former hd survivor
    I am new to this site and I think I have waited too long for a support network. lol. I was diagnosed with HD June 6th 2008 with stage 3b disease. I am now 24 years old. I received 6 cycles of ABVD Chemotherapy with adverse effects to Bleomyacin after 1 cycle and was taken off. I then received 18 treatment of high dose radiation. I was officially in remission in March of 2009. The worst or at least the most annoying effect has been damage to my memory! I have just had a biopsy on my thyroid for a nudule that was present 7 months ago but was not told about. It has spread to lymph nodes as well. A full lymphodectomy will be done and they want to do radioactive iodine treatments as well. I really think i will opt out because radiation is what is causing my papillary carcinoma now , though I know it is nothing like external radiation. I also have questionable spots on my lung and liver as well. I dont really know what i am asking. any thought will be appreciated. i am afraid i am just going to keep getting cancer after cancer until one of them gets the best of me. sorry for the long post and thank you all. I am really worried about depression and weight gain as a result as well. thank you all, love alicia
  • weberdns
    weberdns Member Posts: 154
    #19
    radeohed said:

    newly diagnosed. former hd survivor
    I am new to this site and I think I have waited too long for a support network. lol. I was diagnosed with HD June 6th 2008 with stage 3b disease. I am now 24 years old. I received 6 cycles of ABVD Chemotherapy with adverse effects to Bleomyacin after 1 cycle and was taken off. I then received 18 treatment of high dose radiation. I was officially in remission in March of 2009. The worst or at least the most annoying effect has been damage to my memory! I have just had a biopsy on my thyroid for a nudule that was present 7 months ago but was not told about. It has spread to lymph nodes as well. A full lymphodectomy will be done and they want to do radioactive iodine treatments as well. I really think i will opt out because radiation is what is causing my papillary carcinoma now , though I know it is nothing like external radiation. I also have questionable spots on my lung and liver as well. I dont really know what i am asking. any thought will be appreciated. i am afraid i am just going to keep getting cancer after cancer until one of them gets the best of me. sorry for the long post and thank you all. I am really worried about depression and weight gain as a result as well. thank you all, love alicia

    Hugs!
    Don't have any answers as I am newly diagnosed with Follicular Hurthle Cell Thyroid cancer and have not yet experienced the RI. I am just 2 weeks post op from my 2'nd surgery (had the first one 8 days before!) Just wanted to say sorry that you have another type of cancer...What is HD?? Just wanted to send you a hug and send some support your way!
  • radeohed
    radeohed Member Posts: 5
    #20
    weberdns said:

    Hugs!
    Don't have any answers as I am newly diagnosed with Follicular Hurthle Cell Thyroid cancer and have not yet experienced the RI. I am just 2 weeks post op from my 2'nd surgery (had the first one 8 days before!) Just wanted to say sorry that you have another type of cancer...What is HD?? Just wanted to send you a hug and send some support your way!

    HD
    HD is Hodgkins disease or hodgkins lymphoma. I am so sorry to hear of your struggle as well. Hugs back to you!
  • weberdns
    weberdns Member Posts: 154
    #21
    radeohed said:

    HD
    HD is Hodgkins disease or hodgkins lymphoma. I am so sorry to hear of your struggle as well. Hugs back to you!

    Ah yes......should have thought of that one!
    Hugs!

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