survivor of childhood cancer

crawfordc
crawfordc Member Posts: 8
edited March 2014 in Childhood Cancers #1
I am a 28 year old survivor of childhood cancer. Iwas diagnosed with a brain tumor in February of '82. Is there anyone else like me out there? Any other adult survivors of childhood cancer? Please,if you're out there write to me.
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Comments

  • tom_s
    tom_s Member Posts: 18
    #2
    Hi. I had Leukaemia (ALL) when I was 9, in 1990 (I'm now 20). Everything seems to be OK now, but I'm keen to meet other survivors.
  • katiec
    katiec Member Posts: 1
    #3
    tom_s said:

    Hi. I had Leukaemia (ALL) when I was 9, in 1990 (I'm now 20). Everything seems to be OK now, but I'm keen to meet other survivors.

    I'm a survivor too...
    Hi there, I am 20 years old. I had AMML (Leukemia) in 1984. I would love to talk to other survivors and see what they're up to. Please e-mail me.
  • rory
    rory Member Posts: 30
    #4
    Hi, my name is Rory. There are a lot of us out here who are survivors of childhood cancer. I was diagnosed with Hodgkin's disease when I was 20. I had 4400 rads to the mantle and 3600 rads to the abdomen. I suffer from some long term effects from the radiation ie. lung damage, hypothyroidism, heart problems, stenosis of the subclavian vein, etc. If you want to learn more about long term effects of treatment, there is a great book I just became aware of entitled "Childhood Cancer Survivors - A Practical Guide to Your Future" by Nancy Keene, Wendy Hobbie, and Kathy Ruccione. You can get it at the local library or buy it at any bookstore. It is a great and informative book for all of us. Hope this information is helpful.

    Rory
  • crawfordc
    crawfordc Member Posts: 8
    #5
    rory said:

    Hi, my name is Rory. There are a lot of us out here who are survivors of childhood cancer. I was diagnosed with Hodgkin's disease when I was 20. I had 4400 rads to the mantle and 3600 rads to the abdomen. I suffer from some long term effects from the radiation ie. lung damage, hypothyroidism, heart problems, stenosis of the subclavian vein, etc. If you want to learn more about long term effects of treatment, there is a great book I just became aware of entitled "Childhood Cancer Survivors - A Practical Guide to Your Future" by Nancy Keene, Wendy Hobbie, and Kathy Ruccione. You can get it at the local library or buy it at any bookstore. It is a great and informative book for all of us. Hope this information is helpful.

    Rory

    Hi Rory,
    I'm sorry, I don't quite understand. You say that you are a survivor of childhood cancer and you were diagnosed when you were 20. I thought a person 20 years old was an adult. I don't want to be offensive, but I was talking about people who were children when they had cancer and are adults now.
    Christy
  • crawfordc
    crawfordc Member Posts: 8
    #6
    katiec said:

    I'm a survivor too...
    Hi there, I am 20 years old. I had AMML (Leukemia) in 1984. I would love to talk to other survivors and see what they're up to. Please e-mail me.

    HI KATIE !
    Hi Katie,
    I'm sorry it's taken so long for me to write to you. (I figure since I'm the one who started this discussion that I should respond to everyone who enters it.) It took me a while to figure out how to work through the threads of this chat room.
    It's so good to hear from other people who had cancer when they were young. From what I've figured, you were 3 or 4 when you were diagnosed. Am I right? What kind of treatments did you go through? Did you have chemotherapy, radiation treatment,etc.? I don't remember what I said about my cancer experience in my first message, so whatever questions you have, feel free to ask me.

    God Bless,
    Christy

    You can also write to me at c-catc@juno.com
  • chae
    chae Member Posts: 3
    #7
    Hi! I just discovered this discussion group and I am so excited to find others who have survived childhood cancers. I am 21 and I was diagnosed with AML in '89. How are you doing?
  • chae
    chae Member Posts: 3
    #8
    katiec said:

    I'm a survivor too...
    Hi there, I am 20 years old. I had AMML (Leukemia) in 1984. I would love to talk to other survivors and see what they're up to. Please e-mail me.

    Hi Katie,
    Is that the same as AML? You've probably seen my other message, but I had AML in '89 and I am now 21.
  • tom_s
    tom_s Member Posts: 18
    #9
    chae said:

    Hi! I just discovered this discussion group and I am so excited to find others who have survived childhood cancers. I am 21 and I was diagnosed with AML in '89. How are you doing?

    Hi, I'm 20 and had ALL in 1990 and doing fine. What about yourself, how are you?
  • rory
    rory Member Posts: 30
    #10
    crawfordc said:

    Hi Rory,
    I'm sorry, I don't quite understand. You say that you are a survivor of childhood cancer and you were diagnosed when you were 20. I thought a person 20 years old was an adult. I don't want to be offensive, but I was talking about people who were children when they had cancer and are adults now.
    Christy

    Christy: I understand your viewpoint. I thought the same way you did until I learned that young children and teenagers up to 20 years are grouped in the same category since their bodies are still growing. Most long-term clinics, such as the one in LA accept adults in the long-term survivors clinics for monitoring when diagnosed at age 25 years and under, and there are exceptions beyond that. If you read the book "Childhood Cancer Survivors - A practical guide to your future" by Nancy Keene, Wendy Hobbie, and Kathy Ruccione you will see what I am talking about. Also, there is a listserv that has several survivors that communicate daily regarding late effects from treatment, it is through http://www.acor.org/LTS. There is also a study currently going on out of Minnesota State Univ. involving a large number of survivors (1 to 20 years)that will publish findings soon on a full array of late effect questions. I hope you find this information helpful.

    Rory
  • crawfordc
    crawfordc Member Posts: 8
    #11
    chae said:

    Hi! I just discovered this discussion group and I am so excited to find others who have survived childhood cancers. I am 21 and I was diagnosed with AML in '89. How are you doing?

    Hi Chae. It's great to find fellow survivors of childhood cancer. I'm doing good. Just a few left over, probably life long, effects from the tumor, opration, radiation treatment, and chemotherapy.
  • phydeaux
    phydeaux Member Posts: 2
    #12
    I was diagnosed with mixed cellular hodgkins in 1976 and considered in remission in 1977. I am now 40 years old and still alive and kickin.There have been some problems over the years resulting from radiation treatment and surgury,but on the whole,I have enjoyed good health.
  • sparcky
    sparcky Member Posts: 17
    #13
    Hi iam also a survivor of a pediatric brain tumor . I was diagnosed with medulla blastoma in 1966 at the Hospital for Sick Children in Toronto Canada. I belong to a group at sick kids called Brain child. You may want to check out there website. Its kind
    of tricky to get into. Try www.sickkids.on.ca
    then go to family services. This is primarily a parents group but many survivors attend . write me any time.
  • annedora
    annedora Member Posts: 3
    #14
    Hi! I am a survivor of childhood cancer. I had a Wilms Tumor in my left kidney when I was 4 years old. Now, I'm 25 and doing great except for a few late effects of chemo. I'm so glad I found this site, feel free to email me and chat!
  • keith
    keith Member Posts: 3
    #15
    I am out here! I am 18, and was diagnosed with a pilosytic astrocytoma in 1999. Please email me to chat.
    musicallyhis@mindspring.com
  • sparcky
    sparcky Member Posts: 17
    #16
    sparcky said:

    Hi iam also a survivor of a pediatric brain tumor . I was diagnosed with medulla blastoma in 1966 at the Hospital for Sick Children in Toronto Canada. I belong to a group at sick kids called Brain child. You may want to check out there website. Its kind
    of tricky to get into. Try www.sickkids.on.ca
    then go to family services. This is primarily a parents group but many survivors attend . write me any time.

    If any one wants to contact me {SPARKY) direct, my email is phillipm@attcanada.ca
    Look forward to hearing from any childhood cancer survivor
  • sparcky
    sparcky Member Posts: 17
    #17
    Hi Christy
    Im also a survivor of a brain tumor. I was diagnosed in 1966. One of the few from the 60's. I also know a few brain tumor survivors
    up my way. We are all starting to go through some of the late effects. Our long term follow up clinics are no help. One thing that we find common is dizzyness. It comes and goes. Have you(or any one else) ever had this problem and has any one been able to do any thing for you?
  • noreenw
    noreenw Member Posts: 1
    #18
    Hi, I'm 28 and was diagnosed with ovarian cancer in 1984.If you want to write, please do.
  • slowdancer
    slowdancer Member Posts: 1
    #19
    sparcky said:

    Hi iam also a survivor of a pediatric brain tumor . I was diagnosed with medulla blastoma in 1966 at the Hospital for Sick Children in Toronto Canada. I belong to a group at sick kids called Brain child. You may want to check out there website. Its kind
    of tricky to get into. Try www.sickkids.on.ca
    then go to family services. This is primarily a parents group but many survivors attend . write me any time.

    Hello Sparcky, In 1963 i was diagnosed with a atrocytoma 3. Ihave some old hospital records but there poor copies.I do know that the tumor was inoperatable and recieved Colbat60 as a treatment. All my life I have had poor contration, a hearing loss,short tember ect. All the signs of ADD. I aam looking for any source of information or skills that others might have found usefull
  • sparcky
    sparcky Member Posts: 17
    #20
    slowdancer said:

    Hello Sparcky, In 1963 i was diagnosed with a atrocytoma 3. Ihave some old hospital records but there poor copies.I do know that the tumor was inoperatable and recieved Colbat60 as a treatment. All my life I have had poor contration, a hearing loss,short tember ect. All the signs of ADD. I aam looking for any source of information or skills that others might have found usefull

    Hi Slowdancer, Do you go to a follow up clinic. If so they should have the information that you are looking for. Ironic I should say that because I am fed up with the clinic that I go to. I dont know were you are located but here in ontario you are legally entitled to copies of all your records, although I have had some opposition from the powers that be. They do have the right to charge you for the copies. Can be expensive. It has been a long strugle to get information and proper care. I will be giving a speach at a conference in November.
    POGO is putting it on. You may get some information from them. The web site is www.pogo.on.ca.
    I have however found that the best people to talk to are other survivors. If you can make it to a conference it is well worth the trip. Candlelighters put on excellent conferences. Also get the book Childhood Cancer Survivors as mentioned elsewere on this site. There is lots of information out there. The problem is getting it into the hands of the people who claim that they are looking after us and making them take our concerns seriously.
    I can relate to your hearing loss. I also have the same problem. Loss in the left ear and ringing in theright. Also have problems with blurry double vision. This is common among brain tumor survivors. I was told that it is called meniers disease.
    They dont know what to do for me. But at least its now taken seriously. I see someone outside the clinic for this . When I complained at the clinic I got "its old age you should not have lived this long" and runarounds. Hope that this helps. I do think that the conferences are your best bet. You find out more from the attendees than from the speakers in some cases. There is strength in numbers. Sooner or later the powers that be will no longer be able to look the other way. Our cause is growing. The next Candlelighters Conference is in Vancouver BC in 2003 Try to make it. I am sure that there will be others before.
    Phil
  • tom_s
    tom_s Member Posts: 18
    #21
    sparcky said:

    Hi Slowdancer, Do you go to a follow up clinic. If so they should have the information that you are looking for. Ironic I should say that because I am fed up with the clinic that I go to. I dont know were you are located but here in ontario you are legally entitled to copies of all your records, although I have had some opposition from the powers that be. They do have the right to charge you for the copies. Can be expensive. It has been a long strugle to get information and proper care. I will be giving a speach at a conference in November.
    POGO is putting it on. You may get some information from them. The web site is www.pogo.on.ca.
    I have however found that the best people to talk to are other survivors. If you can make it to a conference it is well worth the trip. Candlelighters put on excellent conferences. Also get the book Childhood Cancer Survivors as mentioned elsewere on this site. There is lots of information out there. The problem is getting it into the hands of the people who claim that they are looking after us and making them take our concerns seriously.
    I can relate to your hearing loss. I also have the same problem. Loss in the left ear and ringing in theright. Also have problems with blurry double vision. This is common among brain tumor survivors. I was told that it is called meniers disease.
    They dont know what to do for me. But at least its now taken seriously. I see someone outside the clinic for this . When I complained at the clinic I got "its old age you should not have lived this long" and runarounds. Hope that this helps. I do think that the conferences are your best bet. You find out more from the attendees than from the speakers in some cases. There is strength in numbers. Sooner or later the powers that be will no longer be able to look the other way. Our cause is growing. The next Candlelighters Conference is in Vancouver BC in 2003 Try to make it. I am sure that there will be others before.
    Phil

    Hospital records
    Hi Phil,
    I saw your message and felt I had to reply. I had Leukaemia just over 11 years ago, when I was 9. At the beginning of August I sent a letter to my old doctor, in London (Maybe I should explain: I've lived for 14 years in the UK, and now live for the past 4 years in the Netherlands) asking for my hospital records. I was a bit dissappointed that for a country where health care is supposedly free that I still had to pay, but they have various rules, so the 300 or so pages were photocopied, sent to me here in NL for what, in comparison to what I've heard from others, was a fairly reasonable amount.
    I must agree with you though, the most help I have had is by talking to other survivors.
    Tom

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