Neuroblastoma survivor with ?'s

reenicd
reenicd Member Posts: 1
edited March 2014 in Childhood Cancers #1
Hi, I am a 31 yr old female who had been diagnosed with Abdominal Neuroblastoma at the age of 5 months. I was treated in Boston, Ma in 1975-76.
My parents didnt speak much about it or inform me with any details of the treatments I recieved. Unfortunetly I have lost both my parents to different types of cancer and now I am old enough to ask questions, and I have many of them.
My first question is,
I have approx. 2 dozen scars on my back in the shape of circles probably the size of pennies. I am told that when I was younger they were very deep, and even today, several of them are still very sensitive. Is anyone familiar w/ the treatment that I might have recieved or what they were caused from?

Growing up as a child I can remember being embarrassed by them and my dad always telling me that they were victory scars and I should be proud to have them, which today, in my adult life, I am.

I am not even sure what stage my cancer was when diagnosed and which treatments I recieved. I was so relieved when I bought this computer and found this web site, now I have a chance to research exactly what Ive always wondered about.

I also have the scar around my waiste which I have seen and also read some info about. The scars on my back are nothing like Ive ever seen before on anyone else, and when I show doctors even they seem blown away, the best way to describe my back is that they are like a leopard print in pattern and shape.
I requested my files from boston when I carried my first of 2 children, and I recieved a minila folder with VERY little information, I am assuming its because of the # of years which have passed, is there any type of library in which I can utilize to research my case that anyone out there knows of?

I thank you in advance, like I said Im new to this, and Im very interested in finding as much knowladge of the possible treatments I may have recieved.

I tried to donate blood recently and I was denied because of the chemo I recieved, which kinda scared me and sparked my initial hunt.
Thank You Again.
«13

Comments

  • lindazame
    lindazame Member Posts: 46
    #2
    Hi,
    I read your message and can tell you that there are other neuroblastoma survivors out there. The long term survivors list at acor.org has a large number of survivors, including neuroblastoma survivors. One of the treatments you might have had as a child would be high doses of radiation. It could result in such a scar pattern. You might want to get the book called Childhood Cancer Survivors by Nancy Keane. You can find it at Amazon and it has lots of good information for child/adolescent survivors. Also there are a number of clinics that now see survivors. Depending on where you are you might want to check out clinics that are now seeing long term survivors. Here is a link to a web page with lots of good information. http://www.cancersurvivorsproject.org/
    Let me know if you need more information.
    Linda Zame
  • sma77
    sma77 Member Posts: 1
    #3
    I am a 29 yr old female dx. with neuroblastoma also at age 5 months. I was treated in 1978. Like you, I have scars on my back. Mine are on my lower back but are deep indentations. They are from numerous bone marrow taps. I also have a long scar across my midsection from tumor debulking surgery. I hope this helps! Let me know if I can help anymore.
  • so__nu
    so__nu Member Posts: 1
    #4
    sma77 said:

    I am a 29 yr old female dx. with neuroblastoma also at age 5 months. I was treated in 1978. Like you, I have scars on my back. Mine are on my lower back but are deep indentations. They are from numerous bone marrow taps. I also have a long scar across my midsection from tumor debulking surgery. I hope this helps! Let me know if I can help anymore.

    Hi-
    m also a long term survivor of neuroblastoma. I was diagnosed and started treatment in 1972 when I was 14 months old. My treatment included surgeries, the removal of my left kidney and adrenal gland plus lots of chemo and radiation (I very possibly got higher doses of both than you since I was treated 6 years earlier). I'm 36 years old now and have become very knowledgeable about the long term effects of the treatment we received. Like you, I knew very little about what happened to me beyond the name of the cancer I had and other general facts. Actually, there wasn't much more to know until recently. In the 80's, the numbers of kids that survived cancer dramatically increased (although neuroblastoma's numbers are still low because it is often misdiagnosed as food allergies or colic). These younger survivors have been studied as they've gotten older and there is much that people like us can find out. Your records are likely still available! Contact St. Jude in Memphis, TN. They are now the headquarters for a huge national study on survivors of childhood cancer (Children's Oncology Group). They may already have your info on file. If not, they'll search for it. I was stunned when a few years ago when I was contacted by these researches---especially since I was treated in Denver and have since moved to 3 different states and several more addresses! I get free annual extensive checkups every year from my local children's hospital that is part of this study. Many, many hospitals across the country take part in this program.
    All of my data is sent to the researchers (my name isn't used). I feel good about this--since I'm older than most survivors, my info is very important. Sorry if I sound like a commercial---not my intent.
    Starting at age 29, I have had some medical problems as a result of the cancer and treatment. I also have other traits that the chemo and radiation caused. For example, I have a LOT of difficulty with math and spatial relations. Evidently, this is a side effect of the chemo I received. Researchers now know that learning disabilities like this can be caused by some of the drugs neuroblastoma was treated with. Also, I am evidently going into early menopause. There's more... I am more than willing to share my experiences---there is much we all need to be aware of. It's scary for me still to go to my checkups and think about some of the late effects, but I believe it is critical to my continued good heath to do so. I have never met or even talked with another neuroblastoma survivor. I've always been the only one---I think it would be nice to get to know some of you. No one else can really understand this part of who I am except others that have been through it too.
    Best regards, Jennifer
    jterman@earthlink.net
  • Accalia
    Accalia Member Posts: 2
    #5
    so__nu said:

    Hi-
    m also a long term survivor of neuroblastoma. I was diagnosed and started treatment in 1972 when I was 14 months old. My treatment included surgeries, the removal of my left kidney and adrenal gland plus lots of chemo and radiation (I very possibly got higher doses of both than you since I was treated 6 years earlier). I'm 36 years old now and have become very knowledgeable about the long term effects of the treatment we received. Like you, I knew very little about what happened to me beyond the name of the cancer I had and other general facts. Actually, there wasn't much more to know until recently. In the 80's, the numbers of kids that survived cancer dramatically increased (although neuroblastoma's numbers are still low because it is often misdiagnosed as food allergies or colic). These younger survivors have been studied as they've gotten older and there is much that people like us can find out. Your records are likely still available! Contact St. Jude in Memphis, TN. They are now the headquarters for a huge national study on survivors of childhood cancer (Children's Oncology Group). They may already have your info on file. If not, they'll search for it. I was stunned when a few years ago when I was contacted by these researches---especially since I was treated in Denver and have since moved to 3 different states and several more addresses! I get free annual extensive checkups every year from my local children's hospital that is part of this study. Many, many hospitals across the country take part in this program.
    All of my data is sent to the researchers (my name isn't used). I feel good about this--since I'm older than most survivors, my info is very important. Sorry if I sound like a commercial---not my intent.
    Starting at age 29, I have had some medical problems as a result of the cancer and treatment. I also have other traits that the chemo and radiation caused. For example, I have a LOT of difficulty with math and spatial relations. Evidently, this is a side effect of the chemo I received. Researchers now know that learning disabilities like this can be caused by some of the drugs neuroblastoma was treated with. Also, I am evidently going into early menopause. There's more... I am more than willing to share my experiences---there is much we all need to be aware of. It's scary for me still to go to my checkups and think about some of the late effects, but I believe it is critical to my continued good heath to do so. I have never met or even talked with another neuroblastoma survivor. I've always been the only one---I think it would be nice to get to know some of you. No one else can really understand this part of who I am except others that have been through it too.
    Best regards, Jennifer
    jterman@earthlink.net

    Hi. I'm Julie, nueroblastoma survivor as well. They found my tumor in 1976 when I was 6 months old and stopped moving my legs (I live with partial paralysis as a result of the cancer). I was on chemo/radiation for 2 years. I have always had problems with math. My mom recently told me she thinks I have always struggled with "chemo brain." I had never heard of that before! Is that possible for survivors like us who have been cancer free for almost 30 years?

    My husband and I recently decided to try and have a child. My doctors are concerned with not only my size (the cancer stunted my growth--I'm only 4'8"), but my neuroblastoma history as well. They want me to go for genetic testing. This confuses me because all along I have thought this was just a fluke thing that happened to me.

    Do you have children, Jennifer? Do you believe the early menopause is related to the cancer and medication? I'd be very interested in talking with you and other long-term '70s survivors.

    Thanks everyone. I'm so glad I found this board!

    Julie
  • lilsteve
    lilsteve Member Posts: 1
    #6
    Hi, I am writing on behalf of my brother who is a neuroblastoma survivor from age 3 months in 1953. There was no chemo then and he was treated with cobalt and radiation. He lost one lung to the cancer and the one he has left is very damaged. The sack around his heart was calcified as a result of the treatment and it is difficult for his heart to pump enough blood and oxygen to supply what his body needs. It's been a pretty tough 54 years. He is not computer savvy and I am trying to get him to communicate with others who live daily with the aftermath of cancer and its treatments. Over the years he has developed many other medical problems and continues to be constantly in and out of the hospital.

    At this moment, he is pacing the floors, unable to relax long enough to sit and try to get to know all of you. But, I hope that with my reading your stories to him, he may find some solice in the fact that he is not alone.

    I hope to be able to get him to write you personally one day so that you can share some information with each other.

    In the meantime, I will pray for all of you.

    Incidentally, all four of us in our family have had cancer. My mother, my brother and I have survived.

    God Bless you!
    G
  • brighteyes1
    brighteyes1 Member Posts: 2
    #7
    Neuroblastoma
    Hi! Reenicd
    I had a Neuroblastoma at 8 months old; only mine was in my neck and head. Plus mine was in 1960. I am not sure but I would think that those scars on your back are radiation burns. I can't say for sure not seeing them. Try looking up radiation scaring in the year you had treatments. Get back to me let me know good luck. My scar is the entire right hand side of my neck; also the skin on it is very thin. The muscle structure is extreamly tight at times. Like when I smile.
    Good Luck, Brighteyes1
  • btcat
    btcat Member Posts: 51
    #8
    Hi reenicd
    I am a childhood brain tumor survivor and don't know anything about your type of cancer,
    I really wish i could help you. All I have to offer is that it is a given that we cannot donate blood. They won't take it as per any risks from residuals of cancer and/or treatments. It's just a minor thing we have to face. Minor in the face of all the late effecxts that many of us childhood survivors deal with.
  • scutchgrass
    scutchgrass Member Posts: 6
    #9
    so__nu said:

    Hi-
    m also a long term survivor of neuroblastoma. I was diagnosed and started treatment in 1972 when I was 14 months old. My treatment included surgeries, the removal of my left kidney and adrenal gland plus lots of chemo and radiation (I very possibly got higher doses of both than you since I was treated 6 years earlier). I'm 36 years old now and have become very knowledgeable about the long term effects of the treatment we received. Like you, I knew very little about what happened to me beyond the name of the cancer I had and other general facts. Actually, there wasn't much more to know until recently. In the 80's, the numbers of kids that survived cancer dramatically increased (although neuroblastoma's numbers are still low because it is often misdiagnosed as food allergies or colic). These younger survivors have been studied as they've gotten older and there is much that people like us can find out. Your records are likely still available! Contact St. Jude in Memphis, TN. They are now the headquarters for a huge national study on survivors of childhood cancer (Children's Oncology Group). They may already have your info on file. If not, they'll search for it. I was stunned when a few years ago when I was contacted by these researches---especially since I was treated in Denver and have since moved to 3 different states and several more addresses! I get free annual extensive checkups every year from my local children's hospital that is part of this study. Many, many hospitals across the country take part in this program.
    All of my data is sent to the researchers (my name isn't used). I feel good about this--since I'm older than most survivors, my info is very important. Sorry if I sound like a commercial---not my intent.
    Starting at age 29, I have had some medical problems as a result of the cancer and treatment. I also have other traits that the chemo and radiation caused. For example, I have a LOT of difficulty with math and spatial relations. Evidently, this is a side effect of the chemo I received. Researchers now know that learning disabilities like this can be caused by some of the drugs neuroblastoma was treated with. Also, I am evidently going into early menopause. There's more... I am more than willing to share my experiences---there is much we all need to be aware of. It's scary for me still to go to my checkups and think about some of the late effects, but I believe it is critical to my continued good heath to do so. I have never met or even talked with another neuroblastoma survivor. I've always been the only one---I think it would be nice to get to know some of you. No one else can really understand this part of who I am except others that have been through it too.
    Best regards, Jennifer
    jterman@earthlink.net

    Neoroblastoma Survivor
    Hi!
    I was born/diagnosed with Neuroblastoma at the age of 9 months (in 1962), so yes, I am an old female survivor. However as I live in the uk, all my follow ups stopped at the age of 12yrs. I have always experienced problems; ie the maths thing! Although I don't know if this is relevent?! As I only received Radio + surgery. I also never had a 'normal' menstrual cycle, sometimes going for 2 months+ without a period or having 3 in a row fortnightly!! I had a fibroma removed at the age of 26, which was the equivalent size of a 5 month pregnancy. This grew out of one of my ovaries, which was subsequently removed. I went on to have 2 daughters, but had to have section deliveries. I too have a mammoth scare across my abdomen which has stayed the same size in proportion to my body as I've grown. (It still reaches from hip to hip). I also went through an early menopause (38 yrs). The reason I am writing on this site, is because approx 2 months ago, three lumps developed on my neck, and I deperately need to know if any other survivors have had similar lumps or bumps recurring? I am due to go to the hospital next week, to have these looked at, but my problem is the 'specialists' don't seem to see the fuller picture and are not aware of the history/present effects of this particular cancer. Oh yeah, I also had benign tumors removed from both breasts when I was 25.........please, please give me some info anyone out there, as it seems once you get this particular cancer it causes you lifelong problems. Many thanks.................
  • Matty
    Matty Member Posts: 21
    #10
    scutchgrass said:

    Neoroblastoma Survivor
    Hi!
    I was born/diagnosed with Neuroblastoma at the age of 9 months (in 1962), so yes, I am an old female survivor. However as I live in the uk, all my follow ups stopped at the age of 12yrs. I have always experienced problems; ie the maths thing! Although I don't know if this is relevent?! As I only received Radio + surgery. I also never had a 'normal' menstrual cycle, sometimes going for 2 months+ without a period or having 3 in a row fortnightly!! I had a fibroma removed at the age of 26, which was the equivalent size of a 5 month pregnancy. This grew out of one of my ovaries, which was subsequently removed. I went on to have 2 daughters, but had to have section deliveries. I too have a mammoth scare across my abdomen which has stayed the same size in proportion to my body as I've grown. (It still reaches from hip to hip). I also went through an early menopause (38 yrs). The reason I am writing on this site, is because approx 2 months ago, three lumps developed on my neck, and I deperately need to know if any other survivors have had similar lumps or bumps recurring? I am due to go to the hospital next week, to have these looked at, but my problem is the 'specialists' don't seem to see the fuller picture and are not aware of the history/present effects of this particular cancer. Oh yeah, I also had benign tumors removed from both breasts when I was 25.........please, please give me some info anyone out there, as it seems once you get this particular cancer it causes you lifelong problems. Many thanks.................

    Late Effects
    Hi my name is Lisa and was diagnosed with a malignant brain tumor in 1965 (ependymoma). I had

    surgery and rdiation to hlf my brain. I belong to a survivors progrm at Memorial Sloan

    Kettering Cncer Center in NY. Since going to this survivors program I have found out that a l

    lot of what you experience (math problems) are late effects from radiation or it could be the

    surgery. Due to I think both surgery and radiation the effects left on the brain are cognitive

    problems. It's funny you have problems with math because a lot of proffesionals asked me about

    difficulties in math but I never had troubles. My difficulties have been in numerous other

    areas. The main effect is on executive functions(leadership,organization,problem solving).

    What kind of work do you do? I have been an registered nurse for years but have hit rock

    bottom with this high pressured stressful work. Are you on disability? What ever strange

    problems you are do to late effects of radiation or surgery. Did you have radiation to the

    whole brain or only half? Please write back, I would love to hear from you.


    Lisa
  • Matty
    Matty Member Posts: 21
    #11
    The scars on your back may have been from some strnge method a docter new of to help you.

    I was diagnosed at age 4 after having been to numerous doctors with out landache diagnoses.

    You may have been hard to diagnose as well. One doctor wanted to cut the neck muscles because

    he said they were to tight. Thank goodness my mother ws so smart and didn't go along with

    every doctor. You may have had a hard time with your diagnosis as well. Think how great it

    is that your parents pulled you through. I was told I can't donate blood either .I never

    knew until I joined a survivors program that cancer survivors can not give blood. I am not

    quite sure why but we can't donate.
  • maryruth1035
    maryruth1035 Member Posts: 16
    #12
    scutchgrass said:

    Neoroblastoma Survivor
    Hi!
    I was born/diagnosed with Neuroblastoma at the age of 9 months (in 1962), so yes, I am an old female survivor. However as I live in the uk, all my follow ups stopped at the age of 12yrs. I have always experienced problems; ie the maths thing! Although I don't know if this is relevent?! As I only received Radio + surgery. I also never had a 'normal' menstrual cycle, sometimes going for 2 months+ without a period or having 3 in a row fortnightly!! I had a fibroma removed at the age of 26, which was the equivalent size of a 5 month pregnancy. This grew out of one of my ovaries, which was subsequently removed. I went on to have 2 daughters, but had to have section deliveries. I too have a mammoth scare across my abdomen which has stayed the same size in proportion to my body as I've grown. (It still reaches from hip to hip). I also went through an early menopause (38 yrs). The reason I am writing on this site, is because approx 2 months ago, three lumps developed on my neck, and I deperately need to know if any other survivors have had similar lumps or bumps recurring? I am due to go to the hospital next week, to have these looked at, but my problem is the 'specialists' don't seem to see the fuller picture and are not aware of the history/present effects of this particular cancer. Oh yeah, I also had benign tumors removed from both breasts when I was 25.........please, please give me some info anyone out there, as it seems once you get this particular cancer it causes you lifelong problems. Many thanks.................

    Mine was diagnosed in '58
    Hi! You're the only other person I've ever heard of who is as old as I am You would have been born 3 years after my surgery and radiation treatments were done in California--USA. In 1958, the tumor they found when I was only 8 weeks old (neuroblastoma) was the sizeof half a grapefruit, in my abdomen. Since then I have had 2 massive, related tumors removed from my spine. The first was diagnosed in 1979--a ganglioneuroma--a slow growing tumor thought to be derived from scar tissue that became irregular (tumor) tissue as a result (they think) of the rediation treatments. I am told that they no longer irradiate neuroblastomas because there seems to be a relationship between radiation of this type of tumor and the subsequent development of the ganglioneuromas. In 1979 the doctors were able to remove about 80% of the tumor with little neurological deficits.

    However, as a ganglioneuroma keeps growing, I discovered a much larger tumor had grown back into the same area over the last 29 years, and had to have a giant tumor (12"x8'x2") removed a year ago at Johns Hopkins hospital in Baltimore, Mariland. The have a spinal clinic there and a Dr who specializes in removing tumors of the spine and then doing spinal reconstruction if needed. I was there for about 8 weeks, and am having to learn to walk again this time since there was more neurological damage this time before we knew what was going on to cause the problem. Thankfully, our health insurance covered most of the >$143,000 hospital bill!

    Anyway--yes, there is a history for those of us who were irradiated, of the tissue that was scar tissue, following the removal of the tumor, and radiation--well, the tissue seems to in some cases grow into these bignign, slow growing (but nasty because they can dissolve the bone around them and encase themselves in that bone...) ganglioneuromas. The doctor I saw at JH was the only MD I've ever heard of who has successfully operated on 2 people with ganglioneuromas subsequent to neuroblastoma and radiation in childhood.

    Let me know if there are any other questions I might be able to shed some light on from my own experience.
    --Maryruth
  • maryruth1035
    maryruth1035 Member Posts: 16
    #13
    diagnosed 1958
    So--I was diagnosed in 1958. They didn't know much about neuroblastoma back then. But, I just had my 51st birthday, and plan to live until I'm at least 95 if Jesus doesn't come back first! In my case, they just opened me up, cut the thing out, closed me up, and then gave me radiation treatments (oops, bummer, ends up that was a no-no because it lead to later tumors--ganglioneuromas, which I've had to have removed twice....aaaarrrrrrrggggghhhh!). Anyway, my scars are different. I wonder why they would have done bone marrow stuff as one reply above suggested?

    --Maryruth
  • Aquagirl18
    Aquagirl18 Member Posts: 45
    #14
    lindazame said:

    Hi,
    I read your message and can tell you that there are other neuroblastoma survivors out there. The long term survivors list at acor.org has a large number of survivors, including neuroblastoma survivors. One of the treatments you might have had as a child would be high doses of radiation. It could result in such a scar pattern. You might want to get the book called Childhood Cancer Survivors by Nancy Keane. You can find it at Amazon and it has lots of good information for child/adolescent survivors. Also there are a number of clinics that now see survivors. Depending on where you are you might want to check out clinics that are now seeing long term survivors. Here is a link to a web page with lots of good information. http://www.cancersurvivorsproject.org/
    Let me know if you need more information.
    Linda Zame

    Questions about Neurblastoma
    Hi everyone I am also a survivor of Neuroblastoma and I have many questions as well. I am 30 years old and I was dignosed sometime around 13 months of age. I have joined a late effects clinic here but I still don't have answers to many of the questions I have about the late effects my treatments caused. For a long time I didn't know any other cancer survivors and now I know I am not alone. I still would like to get to know other childhood cancer survivors. If anyone wants to talk send me a message here and I will try and get back to you as soon as I can.
  • My year 1952
    My year 1952 Member Posts: 3
    #15
    maryruth1035 said:

    diagnosed 1958
    So--I was diagnosed in 1958. They didn't know much about neuroblastoma back then. But, I just had my 51st birthday, and plan to live until I'm at least 95 if Jesus doesn't come back first! In my case, they just opened me up, cut the thing out, closed me up, and then gave me radiation treatments (oops, bummer, ends up that was a no-no because it lead to later tumors--ganglioneuromas, which I've had to have removed twice....aaaarrrrrrrggggghhhh!). Anyway, my scars are different. I wonder why they would have done bone marrow stuff as one reply above suggested?

    --Maryruth

    Neuroblastoma 1952
    I was diagnosed in 1952 at 2 weeks old with a lump in my neck. The neuroblastoma was located in my neck and chest.

    The operation was done at Children's Hospital in Philadelphia PA by the Chief Surgeon of Pediatrics, Dr. Everett Koop. I was 4 weeks old. I was cut all around. (The scar goes from the middle of my chest to the middle of my back. Plus a small neck scar from the biopsy.)

    I did not receive radiation or chemo. I returned to Children's Hospital every 6 months until I was 12 years old. My chest is not symmetric. My growth was stunted and I took hormones at age 16 to stimulate growth. (Done at Children's Hospital.) I was 4'10" at the time. I am now 5'5" and I have 3 six foot sons and one 5'5 daughter.

    Children's Hospital Oncology Department ask me to return after my first two children were born and they investigated hereditary factors for neuroblastoma.

    My four children and ten grandchildren are all healthy.

    Unfortunately my parents were reluctant to tell me much about my operation, and I was a teen before the word cancer was used. (They always called it tumor.) Both my parents are deceased and the only document I have from Children's Hospital is a letter from Dr. Koop to my Aunt, who was a Nurse, Major in the Air Force. The letter explains my illness and projected a poor prognosis.

    I will be 57 on Aug 12.
  • DarcieG
    DarcieG Member Posts: 1
    #16
    Survivor with questions...?
    I am 15 years old, and I will be 16 in March. I was diagnosed with Neuroblastoma at 9 months, and I am now completely cured and healthy. I go to Atlanta every year for annual tests and things like that to make sure everything is running smoothly, and so far every time I've been back they have found nothing. I am concerned, however, with what cancers I am going to have to really look out for in the future. I am somewhat of a hypochondriac, and I have very high anxiety when it comes to my health. I worry about it constantly. I don't want anything to happen to me, now or later. I was just wondering if anyone could tell me what cancers I am more susceptible to because I had Neuroblastoma. Thank you so much for any information.
  • jillebob
    jillebob Member Posts: 12 Member
    #17
    DarcieG said:

    Survivor with questions...?
    I am 15 years old, and I will be 16 in March. I was diagnosed with Neuroblastoma at 9 months, and I am now completely cured and healthy. I go to Atlanta every year for annual tests and things like that to make sure everything is running smoothly, and so far every time I've been back they have found nothing. I am concerned, however, with what cancers I am going to have to really look out for in the future. I am somewhat of a hypochondriac, and I have very high anxiety when it comes to my health. I worry about it constantly. I don't want anything to happen to me, now or later. I was just wondering if anyone could tell me what cancers I am more susceptible to because I had Neuroblastoma. Thank you so much for any information.

    I don't know about the
    I don't know about the cancers that we are going to be more susceptible to but you do worry about it more than I did at your age. I was diagnosed at around 6 months. I was cured. I went for yearly checkups for years and years. When I was a teenager I totally forgot about my neuroblastoma scars. I would go swimming with my friends and they would ask "what in the world are those"... my scars. I have had two kids and I am still here. I am 40 years old. I have heard about us survivors "worry" more than others..stress about stuff..I had shingles at the age of 13 about going to camp. I also have a high anxiety level to everything.."what will go wrong" is my thinking rather than "what happens, happens"... Search the internet for long term effects of neuroblastoma...there is some interesting information out there...
  • jillebob
    jillebob Member Posts: 12 Member
    #18
    jillebob said:

    I don't know about the
    I don't know about the cancers that we are going to be more susceptible to but you do worry about it more than I did at your age. I was diagnosed at around 6 months. I was cured. I went for yearly checkups for years and years. When I was a teenager I totally forgot about my neuroblastoma scars. I would go swimming with my friends and they would ask "what in the world are those"... my scars. I have had two kids and I am still here. I am 40 years old. I have heard about us survivors "worry" more than others..stress about stuff..I had shingles at the age of 13 about going to camp. I also have a high anxiety level to everything.."what will go wrong" is my thinking rather than "what happens, happens"... Search the internet for long term effects of neuroblastoma...there is some interesting information out there...

    A website I found about neuroblastoma survivors
    http://www.sciencedaily.com/releases/2009/07/090731191140.htm
  • Catiebugbee
    Catiebugbee Member Posts: 14
    #19
    I'm so glad I found you guys!
    I am so excited to find this page! I also don't know much about when I had NB as a baby and little kid - it is not spoken of, ever, and I spent the last year of high school tracking down people with photographs of me when I was sick, as well as collecting the stuff I saved from my mother throwing out after I got better. I'm supposed to move on and never look back, but it feels like I'm throwing apart a small part of me that I'll never get back.
    And don't even ASK about my file - it might never have existed, as treatment in NZ is... Well, while the survival rate for high-risk NB is 30% in the states, it's 10% here. If you're able to move to one of the two hospitals in the entire country that actually do pediatric cancer treatment.

    I'm unable to donate blood, but the reason is because NB can still be present in the bone marrow and blood, and a transfusion with your blood could give it to someone else.

    I'm so glad I found all you guys on here. I joined TIC - Teenage Info on Cancer - last year, but most members are undergoing treatment as teenagers, not lost teenage girls trying to find what happened to them.
    I was reading through the posts, and so many things fall into place - I apparently have a really really high IQ, but I struggle with math and some branches of logic; I have some mild ongoing health problems other people on here seem to have; I had trouble leaving the city we moved to in the first place when I was 4, because it turns out the one specialist guy I see every year is here, when he's needed everywhere else, too!

    Sorry if I'm a little incoherent in this reply, I'm just a bit overwhelmed at finally finding others out there who have no idea what happened to them. And at finding you, someone who also feels the need to know what happened, and had a father that actually told her NB was nothing to be ashamed of. I don't know if you have any idea what finding this page - heck, this website! - means to me.
  • Catiebugbee
    Catiebugbee Member Posts: 14
    #20
    jillebob said:

    I don't know about the
    I don't know about the cancers that we are going to be more susceptible to but you do worry about it more than I did at your age. I was diagnosed at around 6 months. I was cured. I went for yearly checkups for years and years. When I was a teenager I totally forgot about my neuroblastoma scars. I would go swimming with my friends and they would ask "what in the world are those"... my scars. I have had two kids and I am still here. I am 40 years old. I have heard about us survivors "worry" more than others..stress about stuff..I had shingles at the age of 13 about going to camp. I also have a high anxiety level to everything.."what will go wrong" is my thinking rather than "what happens, happens"... Search the internet for long term effects of neuroblastoma...there is some interesting information out there...

    I have/had the high anxiety,
    I have/had the high anxiety, too. When I say had, I am referring to the fact that it was worse in my early teens, until it became a complicated mix of OCD and dysthymia, which I got medicine for. More pills... But life is so much better now.
    Thanks for saying that you have kids - I've just always assumed I won't be able to have any (they say it's unlikely, though).

    This post of yours was just the hope I needed in a world full of families still facing what they are told is a 10-30% chance of their child living for another 5 years. Thanks :)
  • Catiebugbee
    Catiebugbee Member Posts: 14
    #21
    My year 1952 said:

    Neuroblastoma 1952
    I was diagnosed in 1952 at 2 weeks old with a lump in my neck. The neuroblastoma was located in my neck and chest.

    The operation was done at Children's Hospital in Philadelphia PA by the Chief Surgeon of Pediatrics, Dr. Everett Koop. I was 4 weeks old. I was cut all around. (The scar goes from the middle of my chest to the middle of my back. Plus a small neck scar from the biopsy.)

    I did not receive radiation or chemo. I returned to Children's Hospital every 6 months until I was 12 years old. My chest is not symmetric. My growth was stunted and I took hormones at age 16 to stimulate growth. (Done at Children's Hospital.) I was 4'10" at the time. I am now 5'5" and I have 3 six foot sons and one 5'5 daughter.

    Children's Hospital Oncology Department ask me to return after my first two children were born and they investigated hereditary factors for neuroblastoma.

    My four children and ten grandchildren are all healthy.

    Unfortunately my parents were reluctant to tell me much about my operation, and I was a teen before the word cancer was used. (They always called it tumor.) Both my parents are deceased and the only document I have from Children's Hospital is a letter from Dr. Koop to my Aunt, who was a Nurse, Major in the Air Force. The letter explains my illness and projected a poor prognosis.

    I will be 57 on Aug 12.

    Same here. Neuroblastoma and
    Same here. Neuroblastoma and my being sick is never spoken of. Ever. Apart from the few photos I've scavenged from people who met me, I don't think anything from or about my life then is in existence anymore!

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