scared

amyg
amyg Member Posts: 3
edited March 2014 in Thyroid Cancer #1
Hello every one

I am worried about my health, everything is new and frankly I am scared. I was diagnose don dec 17th with Multi Focal Papillary Cancer with right 9 mm and 4 mm lesions. I have had a total thyroidectomy and and will have an RAI ablation at the end of the week (100 millicurries) and a post treatment scan a week after that.

My questions are

Where can I look or find out about a prognosis for Multi Focal Papillary Cancer? I have looked at the suggested sites but am having a hard time finding a definitive answer.

What can I really expect after the RAI? My physician acts like everything is going to be right back to normal but people I have spoken with and logs I have read lead me to believe that at the very least I will be very tired.

Does LID really have to be so time consuming? It seems like the LID is not that difficult as long as fresh foods are used, obviously some are omitted, and sodium/iodine is avoided its just that because everything should be fresh it is very time consuming. Am I operating under the right premise?

When will my real voice comeback? The voice I have now is reminiscent of Marge Simpson and I couldn’t scream if my life depended on it. I had the surgery on 5 December.

Thank you all so much, it is truly appreciated!!
Amy

Comments

  • cboo1974
    cboo1974 Member Posts: 56
    #2
    Totally understand
    Hi Amy
    I also was diagnosed with papillary thyroid cancer on Oct.8th afteer my first surgery. It was not found to be cancer until the nodule was removed and a biopsy done. It seems that you may have had the same problem that I did, the nodule was so large that they had to stretch your vocal chord to get the nodule out. It may still be awhile before you get your voice back. I still do not have my voice back 100%, everytime I go to see my ENT doc. he scopes my throat to check it out and the last time I had it done on Dec.22nd I had 90% of the movement in my vocal chords back, so as you can see it is months after my surgery and I still don't have the full use of my voice. but don't get discouraged it will come back.
    As far as finding info. on prognosis try calling ACS they can email or mail info. out to you about the cancer.Just remember that each individuals prognosis is not based on research numbers, everyone is different and I feel that if you are in the right frame of mind to beat the cancer you can. It's a fight that you can win.
    As far as the LID, yes it is very time consuming and since for the RAI you will be hypothyroid you will be tired so I would suggest preparing as many meals in advance as you can so all you have to do is heat it up. Just so you know you do not have to avoid sodium just iodine, you can have salt that is not iodized.
    As far as after RAI, life will not be "normal". I have had a hard time dealing with this fact. Cancer has changed your whole perspective of life you can't go back to who you were before cancer. Yes, you will be tired until your doctor gets you on a correct dosage of thyroid replacement.
    Hang in there. You can beat this devil that has attacked you. Just remember to take care of yourself, pamper yourself once in awhile. I also take great comfort in going into the chat room, there are a lot of great understanding people in there. They may not have the same cancer as you but they have or had some form of cancer and understand what you are going through. good Luck with RAI. Ihope everything works out great and your scan comes back saying you are NED (No Evidence of Disease).
    Cindy
  • ladybug61
    ladybug61 Member Posts: 2
    #3
    cboo1974 said:

    Totally understand
    Hi Amy
    I also was diagnosed with papillary thyroid cancer on Oct.8th afteer my first surgery. It was not found to be cancer until the nodule was removed and a biopsy done. It seems that you may have had the same problem that I did, the nodule was so large that they had to stretch your vocal chord to get the nodule out. It may still be awhile before you get your voice back. I still do not have my voice back 100%, everytime I go to see my ENT doc. he scopes my throat to check it out and the last time I had it done on Dec.22nd I had 90% of the movement in my vocal chords back, so as you can see it is months after my surgery and I still don't have the full use of my voice. but don't get discouraged it will come back.
    As far as finding info. on prognosis try calling ACS they can email or mail info. out to you about the cancer.Just remember that each individuals prognosis is not based on research numbers, everyone is different and I feel that if you are in the right frame of mind to beat the cancer you can. It's a fight that you can win.
    As far as the LID, yes it is very time consuming and since for the RAI you will be hypothyroid you will be tired so I would suggest preparing as many meals in advance as you can so all you have to do is heat it up. Just so you know you do not have to avoid sodium just iodine, you can have salt that is not iodized.
    As far as after RAI, life will not be "normal". I have had a hard time dealing with this fact. Cancer has changed your whole perspective of life you can't go back to who you were before cancer. Yes, you will be tired until your doctor gets you on a correct dosage of thyroid replacement.
    Hang in there. You can beat this devil that has attacked you. Just remember to take care of yourself, pamper yourself once in awhile. I also take great comfort in going into the chat room, there are a lot of great understanding people in there. They may not have the same cancer as you but they have or had some form of cancer and understand what you are going through. good Luck with RAI. Ihope everything works out great and your scan comes back saying you are NED (No Evidence of Disease).
    Cindy

    Darlene
    I was also diagnosed with papillary thyroid cancer. Went thru my first surgery on Dec 19th 08 and then when they found out it was cancer i went in on Jan 2nd to have the right side taken out. Pretty scary when you think everything is ok and almost over and they tell you that you will be going thru the surgery again and have the other side removed. I am just ready to start my no iodine diet-pretty scary since i am trying to figure out how to cook for me (not even sure what i can eat and vary this for 2-3 weeks-but how to combine this with cooking for the family-
    i think the worst part of this is the unknown-but reading your blog, you seemed so upbeat and kinda let me know that everything will be okay-
    i am not sure if you had a job that your went to after the radiation but i was wondering if any how long you were off work.
    thanks
    nice to know that there is others-makes you not feel so alone.
    darlene
  • amyg
    amyg Member Posts: 3
    #4
    ladybug61 said:

    Darlene
    I was also diagnosed with papillary thyroid cancer. Went thru my first surgery on Dec 19th 08 and then when they found out it was cancer i went in on Jan 2nd to have the right side taken out. Pretty scary when you think everything is ok and almost over and they tell you that you will be going thru the surgery again and have the other side removed. I am just ready to start my no iodine diet-pretty scary since i am trying to figure out how to cook for me (not even sure what i can eat and vary this for 2-3 weeks-but how to combine this with cooking for the family-
    i think the worst part of this is the unknown-but reading your blog, you seemed so upbeat and kinda let me know that everything will be okay-
    i am not sure if you had a job that your went to after the radiation but i was wondering if any how long you were off work.
    thanks
    nice to know that there is others-makes you not feel so alone.
    darlene

    scared - a little long
    I just got done with radiation. It really wasn't too bad. The hardest part was I managed to catch a really nasty head cold. On Thursday I only had a sore throat, I went in on Friday for radiation and on Saturday the cold was full force. I didn't want to swallow my own saliva it hurt so bad let alone drink the lemonade! Thank goodness I did do it Friday am because I managed to get down about 70 oz of lemonade before it hurt too bad to swallow. Honestly, I believe if it weren't for the head cold it wouldn't have been so bad, although, the sight food had me queasy starting late Friday afternoon.

    As far as the diet goes I just used fresh fruits and vegetables, fresh meats; not frozen (and not much of it for me) with seasonings with out salt and I drank alot of water. It seemed to work pretty well for the most part, just more labor intensive; no pre-packaged anything. They had chicken fajitas and I had the chicken on top of lettuce with fresh Pico de Gallo. I think I followed the rules, I sure I hope I did!

    I was discharged this morning and as long as I feel up to it I plan on going in to work tomorrow. I am a research nurse and I have my own cubicle with concrete walls so I don't feel like I will be "radiating" anyone. I will work at least half a day and take it from there. My full body scan is next week and my pre-radiation TSH lab number was 2, my doctor seemed to think that this was a good indicator that it had not spread anywhere but myself being NEW to all this and am not sure. I just hope he is right! My scan is on the 16th and he said that he would call if there were any indicators that it had spread, otherwise I would just see him for the 8 week follow up. Does anyone know if this is standard?

    I believe you are right, the hardest part is NOT knowing. I am a planner by nature; I normally have multiple plans just in case the situation changes or something falls through. It was hard to have a plan for this. I really couldn't. My husband is out on the west coast until the end of February and all our family lives out that way as well. Luckily I have some GREAT friends here. So when I made plans for our kids (all 3) and got everything in order, I was so distracted by that, when Friday morning came I just went in and took care of business. I am at home know with a bathroom that only I use, pre-made meals, disposable utensils, a plastic mattress cover (just in case; a little paranoid I know) and a big urge to "get on" with the things. Luckily my eldest is 15 and very responsible so that really helps! I know my way of HEAD ON won't work for everyone but charging through was the best way for me. When I get the results of the full body scan I will take it from there.

    Good luck, please excuse my rambling :) and keep your head up!

    Amy
  • wknox
    wknox Member Posts: 20
    #5
    cboo1974 said:

    Totally understand
    Hi Amy
    I also was diagnosed with papillary thyroid cancer on Oct.8th afteer my first surgery. It was not found to be cancer until the nodule was removed and a biopsy done. It seems that you may have had the same problem that I did, the nodule was so large that they had to stretch your vocal chord to get the nodule out. It may still be awhile before you get your voice back. I still do not have my voice back 100%, everytime I go to see my ENT doc. he scopes my throat to check it out and the last time I had it done on Dec.22nd I had 90% of the movement in my vocal chords back, so as you can see it is months after my surgery and I still don't have the full use of my voice. but don't get discouraged it will come back.
    As far as finding info. on prognosis try calling ACS they can email or mail info. out to you about the cancer.Just remember that each individuals prognosis is not based on research numbers, everyone is different and I feel that if you are in the right frame of mind to beat the cancer you can. It's a fight that you can win.
    As far as the LID, yes it is very time consuming and since for the RAI you will be hypothyroid you will be tired so I would suggest preparing as many meals in advance as you can so all you have to do is heat it up. Just so you know you do not have to avoid sodium just iodine, you can have salt that is not iodized.
    As far as after RAI, life will not be "normal". I have had a hard time dealing with this fact. Cancer has changed your whole perspective of life you can't go back to who you were before cancer. Yes, you will be tired until your doctor gets you on a correct dosage of thyroid replacement.
    Hang in there. You can beat this devil that has attacked you. Just remember to take care of yourself, pamper yourself once in awhile. I also take great comfort in going into the chat room, there are a lot of great understanding people in there. They may not have the same cancer as you but they have or had some form of cancer and understand what you are going through. good Luck with RAI. Ihope everything works out great and your scan comes back saying you are NED (No Evidence of Disease).
    Cindy

    honesty
    Cboo you hit the nail on the head when you sais, "life will not be normal cancer changed you". I wish the medical field would be so honest instead of sugar coating things.Wendy
  • kelly-575
    kelly-575 Member Posts: 24
    #6
    Hello amyg
    I am going through the same thing rite now. I am going to have my radiation in less then a monyh. My frustration is that my endo basically didnt tell me anything about the radiation, my dose and what I need to do before and after. Did your doc prepare you or go over it with you?

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