a little bit of my story....

billieny89
billieny89 Member Posts: 10
edited March 2014 in Thyroid Cancer #1
Im 21 years old and on November 19th 2010 I was diagnosed with Papillary Thyroid Cancer. A month and three days later I was recovering in Memorial Sloan Kettering, after a total thyroidectomy done by the most awesome surgeon ever. I swim in college and if it wasn't for my coach I would have never found this surgeon. If it wasn't for my forced yearly swim physical god only knows how long the nodules would have gone undetected. I had two types of papillary thyroid cancer, on one side i had "tall cell variant"(which is agrressive) and on the other side I had a "follicular" type (which is not so aggressive).

The term "cancer" bring about many emotions and being negative connotations. Although cancer is never pleasant, I take this experience as a blessing. From this experience I realized that anything can happen at any moment and to live life to the fullest. Not saying to go out and be crazy and do things you normally wouldn't but just be a little less uptight and always have a good time and life to please yourself. This experience also shows me who my true friends are. I had two "best friends" and the BOTH missed my surgery day and have stopped contacting me. i have gained an awesome friend, she was with me and my family in the hospital from 9am to 8pm ((she will be in my wedding =]))

This experience helped me grow up, develop stronger bonds with the people who were always there for me, to live life to the fullest, live for yourself and I'm stronger than I ever realized.

Comments

  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    #2
    I applaud your positive
    I applaud your positive attitude! I think that is half the battle, keeping positive through everything. You're abosolutely right. You need to stay positive, and live life to the fullest because up never know what might happen.

    You are also right about finding out who your real friends are. It seems so many "friends" bail when things are bad, but are always around for the good times. A true friend will stick with you through thick and thin, good and bad, always be by your side, no questions asked.

    Please just make sure you follow up with check-ups because thyroid cancer can reoccur.
  • nasher
    nasher Member Posts: 505 Member
    #3
    good vs fair weather friends
    Yes I noticed that as well as soon as I had my thyroid cancer some people decided they didn't want to be near me cause of the C word.

    But i have found a lot of people who are better friends because of this.

    Make sure you learn about the blood-work and what your new normal levels are as well as every scan you need.

    Also see if you can find a cancer support group in your area... I go to one and even though no one else has thyroid cancer its nice being around people who understand that some day you might not feel like doing something but the next you are full of energy, and they dont get scared by people mentioning they had thyroid cancer.
  • MBuff
    MBuff Member Posts: 11
    #4
    Tall Cell
    Wow, you are very young to have tall cell. I don't have enough tall cells to be considered as *having* tall cell, but I had enough of them to be noted on the pathology report (20%) and it has changed my treatment most likely. I had my TT on Dec. 21. I will go in and have bloodwork done in early March, and depending on the bloodwork, it will determine a) whether I can do Thyrogen and b) what kind of RAI dose I need. How did they treat the tall cell? Do you know what percentage of your tumor was tall cells?

    I was a swimmer in college, as well, and now my 9 year old daughter is on the swim team (and pretty good!)
  • billieny89
    billieny89 Member Posts: 10
    #5
    BellsAngel69 said:

    I applaud your positive
    I applaud your positive attitude! I think that is half the battle, keeping positive through everything. You're abosolutely right. You need to stay positive, and live life to the fullest because up never know what might happen.

    You are also right about finding out who your real friends are. It seems so many "friends" bail when things are bad, but are always around for the good times. A true friend will stick with you through thick and thin, good and bad, always be by your side, no questions asked.

    Please just make sure you follow up with check-ups because thyroid cancer can reoccur.

    thanks !
    thanks !

    im really trying, because as we all knows its a very stressful situation. and what makes it worse is that the people that you thought were always going to be there for you aren't. i never had to lean on them for anything and the one time i did they bailed on me. i know some people have told me its because they cant handle someone having cancer, they've never been in this situation, which is perfectly understandable. all i was asking for was a simple how r u feeling and for them not to miss my surgery which was probably the worst they could have done. on a positive note (lol) i have gained an awesome friend and im starting to accept the fact that its better to have a few close friends rather than 50 acquaintances .... so after all this why sit around and be miserable and dwell on what they haven't done, instead i chose to move on and away from the situation .... leading me to remain so positive.

    i will definitely go to my regular check ups ! i will not let a doctors appointment be missed ! so not worth it .... health is number 1 !!

    =]

    are you a survivor of thyroid cancer as well ?

    ~Billie Jean
  • billieny89
    billieny89 Member Posts: 10
    #6
    nasher said:

    good vs fair weather friends
    Yes I noticed that as well as soon as I had my thyroid cancer some people decided they didn't want to be near me cause of the C word.

    But i have found a lot of people who are better friends because of this.

    Make sure you learn about the blood-work and what your new normal levels are as well as every scan you need.

    Also see if you can find a cancer support group in your area... I go to one and even though no one else has thyroid cancer its nice being around people who understand that some day you might not feel like doing something but the next you are full of energy, and they dont get scared by people mentioning they had thyroid cancer.

    its so crazy how people will
    its so crazy how people will turn on you for something like this. this is when we need them there for us the most and they turn their backs. this experience has shown me the people who really care about me. the other are exactly what you said, fair weather friends.

    since this is still new to me im still learning about all the tests and things like that.
    i dont remember being told about necessary scans i would need... what kind of scans should i be aware of ??

    i will definitely look into the support groups thanks ! this is the first effort ive put forth to get to know other survivors and its been a great choice so far to see how much people DO care. i definitely need those kind of people in my life who understand where im coming from and who understand that some days you just dont feel up to it ! i thought i was alone on that i thought it was just me being "lazy" but clearly there are different factors !

    how did u find the group ? is there like a general website to search on ? or did you find it otherwise ?
  • billieny89
    billieny89 Member Posts: 10
    #7
    MBuff said:

    Tall Cell
    Wow, you are very young to have tall cell. I don't have enough tall cells to be considered as *having* tall cell, but I had enough of them to be noted on the pathology report (20%) and it has changed my treatment most likely. I had my TT on Dec. 21. I will go in and have bloodwork done in early March, and depending on the bloodwork, it will determine a) whether I can do Thyrogen and b) what kind of RAI dose I need. How did they treat the tall cell? Do you know what percentage of your tumor was tall cells?

    I was a swimmer in college, as well, and now my 9 year old daughter is on the swim team (and pretty good!)

    pretty young yes definitely
    pretty young yes definitely !

    i'm going in for blood work next week and that will determine if i need RAI, at this point it doesn't look necessary but of course the blood work will finalize that decision. what exactly is "Thyrogen?" for my case i had a TT because at first suspicious cells were found and because i was told that in 90% of the "suspicious" cases it turns out to be cancer. the tumor on my right side (which was 0.7cm) was the tall cell variant which took over the whole tumor (0.7cm) thank god it was found early and it wasn't much ! the other side was 1.1cm and was follicular variant.

    im also lucky because when they removed my thyroid, the outside layer was clean so it didn't have a chance to spread !

    and thats awesome ! swimmming and being athletic has helped me to get through this process ! what did u swim ? and what does she swim ??? thats so cute =]

    i hope all goes well and stays well with you !
  • MBuff
    MBuff Member Posts: 11
    #8
    billieny89 said:

    pretty young yes definitely
    pretty young yes definitely !

    i'm going in for blood work next week and that will determine if i need RAI, at this point it doesn't look necessary but of course the blood work will finalize that decision. what exactly is "Thyrogen?" for my case i had a TT because at first suspicious cells were found and because i was told that in 90% of the "suspicious" cases it turns out to be cancer. the tumor on my right side (which was 0.7cm) was the tall cell variant which took over the whole tumor (0.7cm) thank god it was found early and it wasn't much ! the other side was 1.1cm and was follicular variant.

    im also lucky because when they removed my thyroid, the outside layer was clean so it didn't have a chance to spread !

    and thats awesome ! swimmming and being athletic has helped me to get through this process ! what did u swim ? and what does she swim ??? thats so cute =]

    i hope all goes well and stays well with you !

    Hi Billie Joe,
    I just
    Hi Billie Joe,

    I just realized we were diagnosed on the same exact day! I actually know someone else who was, also. Anyway, Thyrogen is that shot they give you before RAI so you don't have to go off your thyroid meds and go hypo. Some people can get it,others can't. My tumor was 1.5 cm papillary (with 20% tall cells) and had spread to 3 lymph nodes, so I need RAI for sure. If it hadn't, and if I hadn't had the tall cells, I probably wouldn't have had to. Oh yeah, although my tumor was confined to my thyroid, it had invaded a blood vessel in my thyroid, so that's another reason I have to have it.

    As for swimming, I swam free, fly, and did the IM. My daughter so far is best at free, but is pretty good at back and breast (when she's not getting dq'd . . . you know how that is) and is just picking up on fly. I really wasn't very good, to tell you the truth. She has much more natural talent. From her dad, I assume.

    Anyway, it's good to "meet" you. I am sorry you had to go through this.

    Michelle
  • billieny89
    billieny89 Member Posts: 10
    #9
    MBuff said:

    Hi Billie Joe,
    I just
    Hi Billie Joe,

    I just realized we were diagnosed on the same exact day! I actually know someone else who was, also. Anyway, Thyrogen is that shot they give you before RAI so you don't have to go off your thyroid meds and go hypo. Some people can get it,others can't. My tumor was 1.5 cm papillary (with 20% tall cells) and had spread to 3 lymph nodes, so I need RAI for sure. If it hadn't, and if I hadn't had the tall cells, I probably wouldn't have had to. Oh yeah, although my tumor was confined to my thyroid, it had invaded a blood vessel in my thyroid, so that's another reason I have to have it.

    As for swimming, I swam free, fly, and did the IM. My daughter so far is best at free, but is pretty good at back and breast (when she's not getting dq'd . . . you know how that is) and is just picking up on fly. I really wasn't very good, to tell you the truth. She has much more natural talent. From her dad, I assume.

    Anyway, it's good to "meet" you. I am sorry you had to go through this.

    Michelle

    WOW that's a crazy
    WOW that's a crazy coincidence.

    I know this reply is super late (I haven't been on this site for a while now) and I appreciate you sharing your story ! Im sure you took the RAI by now .... how did that go ?

    Swimming is awesome and it's part of what helped me through this experience.
    Everything happens for a reason and im sorry you had to endure this as well. I am now a stronger and a more mature person. I realize how extremely lucky I am and I will forever be thankful for it.

    Great to meet you as well and good luck with all your treatments and please let me know how it all goes !
  • LBlackman
    LBlackman Member Posts: 113
    #10
    billieny89 said:

    WOW that's a crazy
    WOW that's a crazy coincidence.

    I know this reply is super late (I haven't been on this site for a while now) and I appreciate you sharing your story ! Im sure you took the RAI by now .... how did that go ?

    Swimming is awesome and it's part of what helped me through this experience.
    Everything happens for a reason and im sorry you had to endure this as well. I am now a stronger and a more mature person. I realize how extremely lucky I am and I will forever be thankful for it.

    Great to meet you as well and good luck with all your treatments and please let me know how it all goes !

    stregnth
    I just want to tell you that I am sorry you are going through this, but you are so mature for your age. I am a hurthle cell cancer survivor, one of the rarest thyroid cancers out there. This site has been an awesome source of information and the words you said in your first statement about living each day to the fullest and fair weather friends is so true. I applaud you for your stregnth and pray that the rest of your life is cancer free. Thanks for sharing your story with us! Keep us posted, we can all learn from one another!
    Blessings,
    Lynne
  • billieny89
    billieny89 Member Posts: 10
    #11
    LBlackman said:

    stregnth
    I just want to tell you that I am sorry you are going through this, but you are so mature for your age. I am a hurthle cell cancer survivor, one of the rarest thyroid cancers out there. This site has been an awesome source of information and the words you said in your first statement about living each day to the fullest and fair weather friends is so true. I applaud you for your stregnth and pray that the rest of your life is cancer free. Thanks for sharing your story with us! Keep us posted, we can all learn from one another!
    Blessings,
    Lynne

    Thank You
    Thank you Lynne, I appreciate you taking the time out to read my story and for sending me such a positive message. Cancer has made me who I am today. Tomorrow will be 4 months since my surgery and I am even stronger both mentally and physically than before and I am just an overall better/stronger person. I m sorry you had to go through this as well but it has happened and if we can get through cancer we can get through anything. I m sure this has been a crazy journey for all of us but with this site we get to share and learn from others experiences =] Thank you so much Lynne, for your support and the well wishes ! I wish the same for you, a cancer free life =] Stay strong as well ! I will definitely try to ! and if you need anything I m here for you !

    xoxo

    Billie Jean
  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    #12
    LBlackman said:

    stregnth
    I just want to tell you that I am sorry you are going through this, but you are so mature for your age. I am a hurthle cell cancer survivor, one of the rarest thyroid cancers out there. This site has been an awesome source of information and the words you said in your first statement about living each day to the fullest and fair weather friends is so true. I applaud you for your stregnth and pray that the rest of your life is cancer free. Thanks for sharing your story with us! Keep us posted, we can all learn from one another!
    Blessings,
    Lynne

    Support and strength
    I have found much support and strength here throught the people I have met, if only on-line, I still feel the connection. I also have HCC Lynne, and will always be fighting it. I'm having my 5th surgery Wed. for my 3rd reocurrence. Staying positive and strong is the way. It hurts when those close to you, or you thought were close to you bail and run. Most of that is because they don't know how to support you and once they hear cancer, think you're doomed. It's a little bit ignorance, a little human weakness. I think through it all, we become stronger and resilient. Gotta get that hard coat of gloss on to let the negative energy slide off. Gotta shine!
  • LBlackman
    LBlackman Member Posts: 113
    #13
    BellsAngel69 said:

    Support and strength
    I have found much support and strength here throught the people I have met, if only on-line, I still feel the connection. I also have HCC Lynne, and will always be fighting it. I'm having my 5th surgery Wed. for my 3rd reocurrence. Staying positive and strong is the way. It hurts when those close to you, or you thought were close to you bail and run. Most of that is because they don't know how to support you and once they hear cancer, think you're doomed. It's a little bit ignorance, a little human weakness. I think through it all, we become stronger and resilient. Gotta get that hard coat of gloss on to let the negative energy slide off. Gotta shine!

    blessings
    I pray your surgery goes well and let us know the outcome. There are so few HCC people that I have found. Ironically one lives near me in Florida. I am very lucky to have a wonderful supportive husband. I was alone when I had the FNA and when I got the results. I did my scans alone and treatments. This will be the first scan he has taken off the whole week to be with me. I care for my aging parents (sometimes it's the other way around) so we are 320 miles apart, which I think made him realize he doesn't want to be without me and is giving support that he should have from the beginning. You will be in my thoughts and prayers on Wednesday! Good Luck!

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