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    Marathonmom started following

    User: ScarfLady

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    Marathonmom wrote on KarenG_WN's wall

    So much I don't understand. Why me? How did I get this? Thyroidectomy went great. First TMS came back clear. I hated going hypo and no insurance so I didn't go back for second scan (NOT becaue I intellectually knew it was the right thing to do). But ultrasound of neck recently showed something on 2 nodes (PCP says not to worry, nodes pick up everything) but to be safe fo back to oncologist for TMS, so in process of going hypo. and have second scan in 3 weeks. Nobody tells you about side effects of going hypo and how to manage. Nobody tells you what's to be expected or not so each symptom makes me insanely worry like I'm dying. If this is SO curable why do I read so many people having multiple surgeries and doses of I131? Why did I have hair loss and others don't? Why isn't mine growing back and others do? Why can't I tolerate cytomel and others do? And now I just read that I131 can possibly lead to Leukemia???? My oncologist didn't tell me that (is it because it's so very rare? and benefits outweigh risks?) One more thing now I worry about. If I131 is recommended in 3 weeks, do some decline? Hate to complain because oncol. said this is the best CA to get and curable. Just tired of feeling alone and all of this makes me feel contaminated. And tired of breast cancer talk/help so available but feeling in the minority on this, like breast CA is the only. Wish I had someone to be there for me so I had that same support, feel like I'm dying all alone.

    2 Comments
    • BeenThere's Avatar
      BeenThere

      Karen, you are NOT alone. Look for a support group from ACS, church, work, friends/family. God is always there for you and with you. I went through brain cancer with my son for more than 13 years and still don't know much of what you're questioning. I've learned most things on my own and made sure I knew my rights. Doctors work for YOU! Hang in there, stay positive, eat healthy and do good things for yourself. As they said about my son, "he lived like he was dying" - which meant he lived fully each and every day! No matter what your circumstances are in life - it's the only one you will get so LIVE IT!!! www.mattsnodgrass.org (you are not alone).

      about 4 years ago
    • JoLoaretti's Avatar
      JoLoaretti

      Oh do not feel alone, reach out, and one of us will catch you, this is a hard battle and You can do it alone but it will be an easier journey if you can share it.
      My husband had NO INSURANCE, we live in California, he ended up on medical,... odd thing is he gets better care on medical that I do on Kaiser, he gets better care on Medical at City of Hope one of the best facilities, and while he is there he often gets better care than people with great insurance plans, cause their plans have to get approved & the state is GOING to keep my honey alive, so tho there will always be some challenges, with or with out insurance there are benefits to both having it it & not having it...always a ying and a yang, always a good side & a bad side....if you feel like your on the bad side just remember all things in life are a cycle & if your in the dark the light is on its way....

      and then the whole breast cancer thing....yes Breast cancer gets a lot of press but really that does benefit all cancers... it brings more awareness, cause everybody loves boobies~!~
      My husband has AML has had 2 bone marrow transplants & the one 160 days ago did not work, I could find all sorts of things to be sad about, I can find a ton to worry about, but it does not change a thing, what I do is start everyday with what I am grateful for, and that makes the hard parts feel a bit easier. just remembering lifes cycles, and that they always do cycle... good bad.happy sad. light dark.high low. ebb flow. youth. age. life death. sickness health, day night. you are not alone, there are so many of of wondering why me....
      I try and look at the lessons Im learning through this and it is amazing the things, actually the gifts I have been given by having cancer in my life, I learned to live in the moment, I have learned there is no time for bull Sh*#... I learned to be grateful for what I do have & that is right NOW, Ive learned to say what I need to when I need to, I learn to let those I love know it & one of the biggest is I have learned to let others HELP ME~!~ I have always loved to help others, but never let anyone help me... I knew how good it felt to help other people , but would never give anyone else that gift of feeling good by taking care of ME, how selfish I was & how great it does feel when some one who does care about me is allowed that privilege of feeling good for being able to care for a friend. that was a great lesson, and you know what you do not feel so alone when you finally admit you want and need help, it will be there~!~
      hugs
      jo

      about 4 years ago
  • Marathonmom's Avatar

    Marathonmom wrote on hikinggirl's wall

    Hi Hikinggirl, I'm also looking for a friend that I can count on and network with that has or is going through papillary thyroid cancer. I've been looking for 2 years with no luck. Let me know.

  • Marathonmom's Avatar

    Marathonmom wrote on emsavard's wall

    Thank you so much for responding! I've been searching for this type of site/help for over 2 years. Just for starters I need someone who's gone through this (not the doctors) to encourage me and say it'll be ok. I'm scared, confused, alone and worried. Thought I could go it alone but really need a network and a friend that I can count on.

    2 Comments
  • Marathonmom's Avatar
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    Marathonmom asked a questionThyroid Cancer

    I am undergoing papillary (folicular varient) thyroid cancer treatment and really need a friend that has gone through this! Please.

    12 answers
    • ILDenlou's Avatar
      ILDenlou

      hi my name is denise i also have thyroid cancer it is called tall cell it is a agressive form of papillary . i am going to find out if i am in remission dec 6 i cant wait . How can i help you please let me know having cancer is scary .

      almost 4 years ago
    • Meera's Avatar
      Meera

      Hi Marathonmom, You posted this a long time ago, but I just saw it. I have a similar cancer, operated and no RAI. That was 6 months ago. All seems well so far. How are you doing? I have tr ied to research all the issues around this quite thoroughly, so feel free to ask questions, if I can be if help. I hope you have felt supported. I really understand how isolated one suddenly feels when you first get the diagnoses. Please be in touch if you would still like to.

      about 3 years ago
    • Carolina18's Avatar
      Carolina18

      Go to www.thyca.org. There is a person-to-person network that can provide a volunteer that has been through a similar situation to yours. Thyca is a great organization, and the help is available. http://www.thyca.org/sg/tppn/. Best regards.

      over 2 years ago