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

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  • BigSur4ever
    BigSur4ever Member Posts: 1
    #42
    Matty said:

    survivor
    I am 43 years post teatment, I do believe in miracles. Diagnosed at 4years old with a malignant brain tumor(ependymoma). Underwent surgery, and radiation.

    59 years survivor!
    I was diagnosed in 1952 when I was 6 mos old with a Wilms Tumor. Had my entire left kidney surgically removed and endured intensive cobalt therapy treatments thereafter. In 1981 I had Ovarian cancer and had intensive surgery with subsequent radiation treatments. Still alive! Hard girl to kill, I guess! Thank the Good Lord! I am 60 yrs old now and in very declining health, just diagnosed with a near non-functioning thyroid and Stage 3 Chronic Kidney Disease (in my solitary kidney). I lost two children, premature births at 7 and 8 mos respectively in 1972 and 1973. They both died within hours of birth due to lung development complications. Was very health actually till I turning into my 40's. Then things started going south. Intense chronic pain, severe wasting (muscular and skeletal) of the left side, spine, left hip area, severe degeneration of the spine ongoing, accelerating as I am aging. But....I'm still here, still laughing and loving, still have my incredible loving family and my fabulous friends and my faith in God is stronger than ever.
  • crazy98
    crazy98 Member Posts: 25
    #43
    Taffyrn said:

    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

    limb salvage
    I know this is an older post but I had limb salvage. 3 to be exact! I had osteosarcoma. If you are still interested I can tell you all about my experiance! passingthetest98@aol.com I am 13 years cancer free!
  • allyhendrikson
    allyhendrikson Member Posts: 9
    #44
    So great to hear!
    I wasn't a childhood survivor myself, but my brother is--he's twenty nine! And we are so happy that he's engaged and getting married. He is such an inspiration to me. Thanks for sharing your story too! It's awesome to hear when other people find success with good compassionate doctors. On a side note, there is a site that has been in the news lately that I recently checked out (it's not meant for community necessarily) but I think it could have really helped my family with my brother's diagnosis early on--you can ask board certified doctors any health questions and they will respond (for free!). I haven't asked any hodgkin's related questions yet, but I wanted to share if you want to check it out! :) HealthTap is the name of the company, and I've asked a few questions about my own symptoms of certain health problems and doctors have been a real help! Managing my brother's condition would have been so much easier if we were able to access doctors in real time before making an appointment. healthtap.com is seriously going to change medicine.

    I pray for your continued health and happiness Christy! :) Blessings.

    Ally
  • harrietpeter
    harrietpeter Member Posts: 6
    #45
    Check out this article:
    Check out this article: http://blogs.reuters.com/small-business/2012/06/28/tech-tonic-checks-in-with-healthtap/. It's an amazing mobile Health tech site called HealthTap which has been generating lots of press lately! It would be a great place to find information about childhood cancer from real doctors! This community is great too!
  • stevoa29
    stevoa29 Member Posts: 2
    #46
    31 yrs free of cancer
    hi I was diagnosed with astocytoma of the spine (T12/L1) when I was 9yrs old Im now nearly 40, on no pain killers just blood preassure tablets,but it did leave me in a wheelchair, but I have my life so I cant complain :)

    regards
    steve..
  • nettecg
    nettecg Member Posts: 8
    #47
    stevoa29 said:

    31 yrs free of cancer
    hi I was diagnosed with astocytoma of the spine (T12/L1) when I was 9yrs old Im now nearly 40, on no pain killers just blood preassure tablets,but it did leave me in a wheelchair, but I have my life so I cant complain :)

    regards
    steve..

    26 cancer free
    Took awhile to read through everyones posts. I hope some of you are still checking in on the forum.

    I have been cancer free for 26yrs as of Feb 16 of this year. I was first diagnosed with leukemia (ALL type) Nove 19, 1983. Just a month and a half before my third birthday. Got to spend it in the hospital. Yippy! The treatment I had was a combination of chemo and radiation and I was part of a reserch group. So still go back for follow ups. And yes visiting the peds clinic at the hospital when as an adult (I am now 31) is a bit embarrising at times. But I shrug it off most of the time. As a couple of the nurses I had when I was treated have been at the clinic for years now. Sadly though the last of my Drs has recently retired. So there is no one left there aside from the nurses who know what I went through.
    The treatment I had left me with side effects. Even though they found no cancer in my brain they had to follow protocol. It left me with a learning disability; I can't comprehend basic math and have a short term memory problem. A few years back I started to experience pain in my feet and a local oncologist thought it was risidual nerve damage. Those of the official diagnosis. Unofficialy I've experience fatige, joint aches, stiffness and muscle spasms almost all my life. Other than those things I have been mostly healthy aside from an annual cold and several bouts with the flu, bronchitis and tonsilitus ( still have them ) when I was younger.
    I also have nerve damge in my limbs as well and a search for that led me to this forum. :) Yay so happy to meet you all!
  • JeannieRu
    JeannieRu Member Posts: 4
    #48
    Neuroblastoma 52 years ago
    I am 55 and had neuroblastoma at age 3.
  • BBdogs
    BBdogs Member Posts: 39 Member
    #49
    btcat said:

    : )
    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.

    Astrocytoma Grade III

    btcat,

    Unfortunately I found this site because I have recently been diagnosed with anal cancer.  My son, however, had an astrocytoma diagnosed at age 2, he underwent multiple surgeries and radiation therapy.  At 21 he was diagnosed with meningioma(sp); most likely due to the radiation he received at age 2, this 2nd one was benign.  He is 32 and lives at home with me, probably always will/should.  Side effects from the radiation which at that time was whole head and spine have taken their toll on his life but at least he is alive!  I don't know what type of issues you are having but it would be interesting to hear.

  • mbundgus
    mbundgus Member Posts: 14
    #50

    Hi Christy aka btcat !  I believe I answered this post a few years back... wanted to answer again with an update... I will celebrate my 50th year post Hodgkin's Lymphoma.  I was 4 and a half years old in 1963.  I was treated with Chemo (Cytoxin) and (Cobalt) radiation.  I was diagnosed with Thyroid Cancer and had a Radical Thyroidectomy in 1976 when I was 17 years old and have been on Thyroid pills with no major problems all my life.  I had a Spinal Cord Tumor diagnosed as a meningioma in 1997.  Successfully removed and I again resumed my life.  In 2000 I was diagnosed with Breast Cancer again had Chemotherapy and internal radiation called Bracea Therapy. I again resumed my life once again,  and in September of 2011 I was diagnosed with Metastatic Breast Cancer.  First found in soft tissue. I had the mass  in my upper thigh lower buttock which was removed and I resumed my life with Hormone Receptor Therapy.  Most recently December of 2012 I was diagnosed with Breast Cancer METS in Bone and Liver and possible Lung. Estrogen Positive, and NEU Neg. I will continue Chemotherapy Abraxine, and Zometa to rebuild bones.  This has been successful since my last CT Scan and Blood Work done March 26, 2013. I will take as long as my body remains non toxic / or the tumors are gone...  I am 54 years old.  I plan on going back to work to keep my benefits. Unfortunately in my cased disability is not enough money to live on without a second income. My Childhood Cancer diagnosed in 1963 to date... April 1 2013... and no this is not an April Fools !! 

  • mbundgus
    mbundgus Member Posts: 14
    #51
    JeannieRu said:

    Neuroblastoma 52 years ago
    I am 55 and had neuroblastoma at age 3.

    Wow !!

    That is amaizing...  How did they treat you ?  and have you had any side affect or other cancers since... ?  I celebrate 50 years... I had Hodgkin's Lymphoma in 1963. I was 4. I was treated with Chemo Therapy and Radiaiton. I currently have Breast METS in Bones and Liver, and currently on Chemo-therapy. I Had a soft tissue tumor which turned out to be Breast METS in 2011, Breast Cancer in 2000, Spinal Cord Meningioma in 1997, and Thyroid Cancer in 1976.  All of which believed to have been caused by the full Mantel Cobalt Radiaiton I received in 1963.    

  • lauralou222
    lauralou222 Member Posts: 1
    #52
    ccreader said:

    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

    Wonderful!

    I was diagnosed in 1973 at the age of 3 with Acute lymphoblastic leukemia (ALL) and was treated at NIH with Cranial radiation and chemo and went into remission until 1987 and relapsed.

    After 3 and a half years of chemo in and out patient treatments with all the works... LPs and Bone marrows, (started college a year late and finished up while in college)  I went into remission right before my 21st birthday. I have been in remission since then.  It is wonderful to know that there are others out there like me.  Nice to meet everyone!

  • light556
    light556 Member Posts: 1
    #53
    20 years today!

    It's been a long time since you first asked this question! I am 20 years out from my diagnosis today! I was diagnosed with osteosarcoma in my left femur a few days before my 7th birthday. Doing well now :)

  • lewandowski46
    lewandowski46 Member Posts: 3
    #54
    20 year's coming up in August

    20 year's coming up in August of 2014!

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