Are there any other 20 plus year since siagnosis childhood cancer survivors out there?

2

Comments

  • BrittaA
    BrittaA Member Posts: 19
    #22
    17 years and counting!
    Hi everyone, I have been cancer free for 17 years now – I was diagnosed with Hodgkins when I was 16. I recently started a blog, Cinco Vidas (http://blog.cincovidas.com/), as a resource for cancer patients as I found it difficult to find much information on treatment side effects. I’ll keep my fingers crossed for all the survivors here that we make it another cancer-free 20 years! Love, strength and survival, Britta
  • tesslynn32
    tesslynn32 Member Posts: 5
    #23
    I am 33 and have been cancer
    I am 33 and have been cancer free for 30 years. Alot of the six flags parks are doing what they call a walk in the park to help raise money for childhood cancer and a cure for them, they have done it now for 2 years and i participated in both years and it was an awesome experience.
  • liveformiracles
    liveformiracles Member Posts: 13
    #24
    20 years :)
    Hi, my name is Laura. I was diagnosed with ALL (Acute Lymphoblastic Leukemia) at 3 and I am now 23 years old. I went through 3 years of treatment, including chemotherapy and radiation. I struggle with some side effects from the treatment, but I view my diagnosis as a blessing and a way to help others. I also have two friends that are childhood cancer survivors and are in their 20s...we volunteer a lot with Relay for Life and Camp Sunshine. I love meeting people that are also cancer survivors and sharing experiences! Feel free to contact me ^.^
  • Toshy
    Toshy Member Posts: 24
    #25
    30+ years! (astrocytoma)
    I was diagnosed when I was 7 in 1977. It was in operable as it was on my brainstem. I had radiation treatments in late 70's, chemo in early 80's. A couple of years after stopping chemo. I was told the tumor no longer showed up on the CT scan. Later MRIs continued to be clear.

    I was told later I had been given 6 months to live and within a month or two it was 6 weeks... Although mine has been a hard life I'd say, it's been a very happy one!

    I was diagnosised with an malignant astrocytoma but now the Cleveland Clinic doctor I've just seen is guessing it was actually a Medullablastoma( or ependyoma).

    If you are interested in more details about my story see "my story" in my EXPRESSIONS.

    God bless us all. (He already has!)
  • jandrmom
    jandrmom Member Posts: 2
    #26
    23 years
    Hey there!
    I was dx with acute myelogenous leukemia at 17 in 1987...23 years out now!

    I was dx with breast cancer in 2006...4 years and counting.

    Nice to meet others who have been there - done that.

    :)
    Jackie
  • FunnyFace
    FunnyFace Member Posts: 15
    #27
    Blessed to be able to say "Cancer free for 20 yrs and counting!"
    Hello, I was diagnosed with osteosarcoma the summer I turned 13 and now I am now 33 y/o. Had bone salvage surgery (I have an internal femur/knee prosthesis). Had a year of chemo. It was a tough road but I got through it with the help of the wonderful family, friends, doctors and nurses that God sent me : )

    Congratulations to all survivors out there no matter how many years you have under your belt!!
  • FunnyFace
    FunnyFace Member Posts: 15
    #28
    Blessed to be able to say "Cancer free for 20 yrs and counting!"
    ***SORRY I POSTED THIS TWICE FOR SOME REASON AND I DONT KNOW HOW TO DELETE A COMMENT***Hello, I was diagnosed with osteosarcoma the summer I turned 13 I am now 33 y/o. Had bone salvage surgery (I have an internal femur/knee prosthesis). Had a year of chemo. It was a tough road but I got through it with the help of the wonderful family, friends, doctors and nurses that God sent me : )

    Congratulations to all survivors out there no matter how many years you have under your belt!!
  • btcat
    btcat Member Posts: 51
    #29
    Survivor86 said:

    I am a 23 year survivor of HD
    Are you dealing with any late effects? Do you know of any follow up facilities that help the uninsured, I live in TN. Smokey Mountains, the doctors here don't know about the long term health problems I'm having.

    Thanks,
    Survivor86

    long term
    Hi. It sounds like we're in the same boat. I don't know of any follow up facilities that help the uninsured. I'm trying to find help myself. My doctor doesn't seem to really understnd this stuff. I'm trying to find anyone who can help me.
  • btcat
    btcat Member Posts: 51
    #30
    Aquagirl18 said:

    hi everyone
    I'm 30 and I had my cancer when I was about 13 months old. I have been out of treatment since I was maybe 2 or three years of age. I'd like to find other childhood cancer survivors too. If anyone wants to talk we can exchange messages here or trade e-mail addresses. Nice to meet all of you.

    Hello
    Hi aquagirl,
    I'd like to talk. My e-mail is kitty.cat72@centurytel.net
  • btcat
    btcat Member Posts: 51
    #31
    Gene0440 said:

    29 Years in Remission !!
    Hi btcat..

    Saw your post and thought I would drop you a line.

    Diagnosed when I was 1 year old with Rhabdomysarcoma ( Bladder ) Cancer. Have had a great life. Ride Dirt bikes and snowboard on the reg. Live in Sunny Southern California ( Los Angeles Area ) and would love to share my story with anybody who is interested..

    Hi : )
    Hi Gene,
    I'm interested in your story. My e-mail is kitty.cat72@centurytel.net
  • btcat
    btcat Member Posts: 51
    #32
    tesslynn32 said:

    I am 33 and have been cancer
    I am 33 and have been cancer free for 30 years. Alot of the six flags parks are doing what they call a walk in the park to help raise money for childhood cancer and a cure for them, they have done it now for 2 years and i participated in both years and it was an awesome experience.

    Hi
    Tell me more about this "Walk in the Park" I'd love to do what I can to help with childhood cancer. Too many children experience cancer and we seem to fall under the radar with all the focus on breast cancer and other adult cancers.
  • btcat
    btcat Member Posts: 51
    #33
    liveformiracles said:

    20 years :)
    Hi, my name is Laura. I was diagnosed with ALL (Acute Lymphoblastic Leukemia) at 3 and I am now 23 years old. I went through 3 years of treatment, including chemotherapy and radiation. I struggle with some side effects from the treatment, but I view my diagnosis as a blessing and a way to help others. I also have two friends that are childhood cancer survivors and are in their 20s...we volunteer a lot with Relay for Life and Camp Sunshine. I love meeting people that are also cancer survivors and sharing experiences! Feel free to contact me ^.^

    : )
    Hi! I thought since you left a note I'd say hi. I don't suppose that your friends are ca brain tumor survivors either. It's really nice to connect with other childhood cancer survivors, but I'd really like to connect with a childhood cancerous brain tumor survivor.
  • btcat
    btcat Member Posts: 51
    #34
    Toshy said:

    30+ years! (astrocytoma)
    I was diagnosed when I was 7 in 1977. It was in operable as it was on my brainstem. I had radiation treatments in late 70's, chemo in early 80's. A couple of years after stopping chemo. I was told the tumor no longer showed up on the CT scan. Later MRIs continued to be clear.

    I was told later I had been given 6 months to live and within a month or two it was 6 weeks... Although mine has been a hard life I'd say, it's been a very happy one!

    I was diagnosised with an malignant astrocytoma but now the Cleveland Clinic doctor I've just seen is guessing it was actually a Medullablastoma( or ependyoma).

    If you are interested in more details about my story see "my story" in my EXPRESSIONS.

    God bless us all. (He already has!)

    Hello
    You're the first person who's story I read seems much similar to mine beyond the fact that we'e all adult survivors of childhood ca. I was diagnosed with a brain tumor from a CT scan I had. During surgery to remove that tumor a biobsy was done and the tumor was found to be cancerous. It was inside the top right ventricle of the spine and my cancer was labeled medullablastoma. I was 10 near 11 when this all started. I'm 38 now. I'm dealing with a lot of long term affects from the operation, radiation and chemo. I assume you have/are too. I'll give you my e-mail so we can chat. kitty.cat72@centurytel.net
  • btcat
    btcat Member Posts: 51
    #35
    unknown said:

    This comment has been removed by the Moderator

    Hi
    I wish we got a plaque or statuette or such. We just seem to get forgotten. I'm 27 years past dx. I had a party at 20 years, but 25 yrs went unnoticed. I think my mom wants to forget that I had CA . . . ., and it feels like the rest of my family has.
  • dubc
    dubc Member Posts: 8
    #36
    Good to See
    I'm glad to see all the survivors out there. I'm a 38 year survivor of childhood (two and a half years old) Medulloblastoma. I had brain surgery and received cobalt radiation treatments. I've had my share of side effects too. I was recently reminded by my father and a recent article, that my surgery took place early April 1973 (just when the World trade center opened it's doors for the first time). I'm really happy to see I'm not alone!
  • ccreader
    ccreader Member Posts: 1
    #37
    28 years!
    Hi,
    I was diagnosed with Leukemia at 20 months old, was in treatment until the age of five, but have been healthy since.
    I just found out about CSN and feel so blessed to have the opportunity to speak with others about cancer and share hope with people who are fighting the battle now.
    Nice to "meet" you all!
    Correne
  • Taffyrn
    Taffyrn Member Posts: 1
    #38
    Almost 23 years
    I had osteosarcoma in 1988... They did a limb salvage... It was the first year they didn't just amputate your leg.... I don't have a knee but I have done well until Jan of this year when in had an injury at work... And they think I have a fracture but I am waiting on the ct results.... While seeing the ortho doc we discussed the possibility of my getting a knee and he says he can do it... It will just be painful and require lots of physical therapy. Am seriously thinking about getting it, but wish I knew someone else who had my kind of limb salvage and had the surgery. I have a 2 1/2 year old and am 42 years old now.... I was 19 when I was diagnosed with osteosarcoma and have been blessed with very good health since then and I work as a nurse practitioner now.
    Heather
  • lucyofnarnia
    lucyofnarnia Member Posts: 4
    #39
    Hey everybody :)
    Husband and I are both 20+ year survivors.

    Me: Hodgkin's, fifteenth birthday surprise, diagnosis August 1988
    Husband: optic nerve germinoma, senior send-off at age seventeen, diagnosis January 1987

    We are a really cute couple IMO, but carry enough meds to stock a small pharmacy, generally speaking....

    Nice to see some company around here. :) I tell people I'm total old school: the days when bone marrows were performed without sedation even in pediatrics...when Zofran and EMLA and growth factor shots did not exist...when surgery was the gold standard for staging Hodgkin's...and when my hospital did not even have a cancer clinic; we operated out of the hospital's ER.

    Yeah, been around the block, not too shy about telling the tale, either.... ;)

    Late effects info available upon request.

    Nice to "meet" y'all....

    Best wishes,
    "Lucy"
  • Gliomadude
    Gliomadude Member Posts: 7
    #40
    38 years after low grade glioma and radiation
    so there are others!!! great news! I was 11 when I got the news of my tumor after that I had
    6 weeks of RT. just recently I started having weird symptoms (balance issues, etc.) now the docs suspect another tumor. looks like it is game on all over again. for another 38 years, I'm in. best to all and I'm so glad you're all here.
  • SHAN38
    SHAN38 Member Posts: 2
    #41
    Gene0440 said:

    29 Years in Remission !!
    Hi btcat..

    Saw your post and thought I would drop you a line.

    Diagnosed when I was 1 year old with Rhabdomysarcoma ( Bladder ) Cancer. Have had a great life. Ride Dirt bikes and snowboard on the reg. Live in Sunny Southern California ( Los Angeles Area ) and would love to share my story with anybody who is interested..

    RHABDOMYOSACROMA OF BLADDER CANCER FREE 34 YRS
    I WAS DX WHEN I WAS 3 WITH RHABDO OF BLADDER ALSO I AM EXPERINCING ALOT OF FATIGUE NOW AT AGE 37 WOULD LOVE TO TALK WITH YOU ABOUT YOUR LIFE AFTER CANCER NAD WBC IS STAYING A LITTLE LOW ALL DOCS SAY OK BUT IT IS FREAKING ME OUT A LITTLE WHERE WERE YOU TREATED

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