long term survivors

Gracies_Mum
Gracies_Mum Member Posts: 8 Member
edited December 2023 in Childhood Cancers #1

Are there any other long term childhood cancer survivors out there ?

Does anyone need to talk to a long term survivor.

Comments

  • shannonbh88
    shannonbh88 Member Posts: 3 Member
    #2

    Hi, this thanksgiving eve will be 29 years from Childhood Acute Lymphoblastic Leukemia. Congrats to you and your survivorship.

  • Gracies_Mum
    Gracies_Mum Member Posts: 8 Member
    #3

    Congrats to you too.

  • SarahMor
    SarahMor Member Posts: 5 Member
    #4
    https://csn.cancer.org/discussion/327151/long-term-survivors

    I had Myxoid Liposarcoma tumor on my right thigh back in 2008. It was excised along with a wide margin of error. I was scared sh*tless, but trusted my doctors when they said there was very little chance of recurrence. I had radiation but no chemo. It was true, there has been no recurrence and I’m still here.

  • Spongybear
    Spongybear Member Posts: 6 Member
    #5

     I’m 46 and was diagnosed at age 2 with a tumor the size of 3 grapefruits on my left kidney. I had surgery , chemo and radiation. I’ve had many complications since- including a seriously decreased heart rate during childbirth (but I have a perfectly healthy 21 year old son now!) and cardiac arrest resulting in 53 minutes of cpr due to a weaken heart’s reaction to a blood pressure drug. It’s been such a long road physically, mentally and emotionally. But, I’m still here. If I could give my best advice- I’d say to stay on top of follow up- no matter how excessive it may seem. At some point- the impact of what you went through will hit you. And you’ll want to know you’ve done everything you could for yourself and your loved ones. I’d love to know what others experienced. It feels so isolating being in my situation

  • reinamarie
    reinamarie Member Posts: 2 Member
    #6

    I am in my 24th year of remission from Leukemia and I'm now struggling. From age like 13-21 everything felt completely normal (considering the situation), so I never really had anything new to share with doctors, I was always just fine and in no pain. Now, I'm having a lot of later mental and physical difficulties, but what kind of doctor to you talk to this much later on?? Do you still talk to a hematologist/oncologist or just a general internist? I have yet to find an adult medicine doctor who understands or can relate. I appreciate anyone who has some insight, I have no idea who you're supposed to see for late-term chemo effects from childhood when you're no longer pediatric, because they won't talk to you anymore after 18.

  • Gracies_Mum
    Gracies_Mum Member Posts: 8 Member
    #7

    I get what you're saying. Try almost 42 years past diagnosis. Luckily I've been able to get some great general practitioners. Currently my doctor seems very interested in long term childhood survivors and late effects. For advice I'd recommend searching here at ACS and any other online support you can find. This chat is a great place to find advice and support., keep coming back and search different topics

  • Carolinatwin2
    Carolinatwin2 Member Posts: 1 Member
    edited February 13 #8

    56 year survivor of Hodgkins Lymphoma and all the full mantle field radiation treatments that went with it. It would be great to chat with another that went through a similar situation. The long term effects of the radiation have been challenging.

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