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Neuroblastoma survivor with ?'s

reenicd
Posts: 1
Joined: Jun 2006

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.

lindazame
Posts: 46
Joined: Jan 2002

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

Aquagirl18
Posts: 45
Joined: Apr 2003

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.

Catiebugbee
Posts: 14
Joined: Aug 2010

I have very little information to give - I was very young, and have since developed a repressive memory, and pretty much all my photos and hospital stuff/belongings got thrown out after I got better... I think my mother wanted me to just move on and live my life, and not ever consider myself to be that same little girl who would request to see the clinic goldfish (actually, it was the tank's suckerfish I was in love with!) before every blood draw.

I'm at uni now, living away from home in the place I lived before we moved to the place I was treated. It's both lifting and overwhelming when I retrieve even just a tiny piece of one of those memories, which happens now that I am back at the home I knew as a child.
Anyway, having someone to talk to could be good, so if you want to get to know someone else, I don't mind if you message me back. :)

sma77
Posts: 1
Joined: Feb 2007

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
Posts: 1
Joined: May 2007

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
Posts: 2
Joined: Jun 2007

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

scutchgrass
Posts: 4
Joined: Feb 2009

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
Posts: 21
Joined: Aug 2008

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

maryruth1035's picture
maryruth1035
Posts: 16
Joined: Mar 2009

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

Carlas
Posts: 3
Joined: Dec 2010

I am 44 years old and had Neuroblastoma surgery (3 tumors) when I was 18 months old. I had radiation and some chemo. I also have a scar that stretches across my lower abdomen from hip to hip. At 27 years of age I was dianosed with arthirits in one of my hips and was told to deal with pain aslong as possible through self medicating up to 800 mg og ibuprofen as needed and years later would need hip replacement. Years have passed and I have since relocated to NC from OH. I have seen a new family doctor who appears interested in my history. He has told me he believes this pain is related to scar tissue pulling on the muscle due to my growth from infant to adult and stated it is not arthritis. He seems to recognize the pain I have as well as loss of range of motion. I have not been able to ride my horse for about 3 years and had some discomfort prior to that. Walking is also painfull at times. My doctor seems caring, but has only pointed out how lucky I am to be here today and that most people whom have had this serious surgery have to wear cholostomy bags today. He has not offered any suggestions (only to continue self meds) regarding the scared muscle and pain. I always have stiffness and the pain comes and goes though more now days and is extremely painfu. I am not looking to take heavy pain killers (prescibed). I am wondering if there is a treatment anyone knows for this? With my doctor's response, it seems as though I should live with this pain. I have never had children due to infetility and only had mentration from 15years of age to 27 years of age due to horomone medication doctors had me on. If anyone has any suggesstions let me know.

I had bilateral ( both hips) total replacement with anterior procedure done on 6/3/2011. The scars are on the tops of my hips. I feel so much better and the pain is gone. FYI the muscle scar tissue had nothing to do with my pain. I had bad arthritis in both hips. I kept after my doctor until he made the orthopedic refferal. I did not go with fist one which would have been done one hip at a time and I would still be in pain. I did the research and got a 2nd opionion and that doctor asked if I had thought about doing both the same time, because of the damamge I could have done to the one operated on having to use a bad hip to heal on. I would reccomend the rarely done anterior procedure ( most hospitals in US do not have the special expensive table required for this operation, though it is done regular in Europe)to anyone having arthritis in both hips. The neuroblastoma cancer is what caused the arthritis later in life in both of my hips. I will find out next week when I will be able to ride again. I was walking 2 miles 3-5 times a week in less than 2 months (end of July). I graduated from in home PT a week early and outpatient PT 2 weeks early. The recovery time is so fast it has been amazing and all my freinds say I look like a totally different person walking upright instead of swayback and limp is gone. I am so much happier being pain free.

JeannieRu's picture
JeannieRu
Posts: 4
Joined: Aug 2011

Hi,
Diagnosed at age 3 and now I'm 55. Still alive and kicking... but I'll admit radiation is the gift that keeps on giving. I guess I dropped off the charts before thay started tracking long term survivors because I've never been contacted for any studies. Might be nice to get the FREE check-ups though LOL!

Lots of challenges but not a sob story.

Stay Tough,

xoxox
Jeannie

lilsteve
Posts: 1
Joined: Aug 2007

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
Posts: 2
Joined: Mar 2004

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's picture
btcat
Posts: 63
Joined: Mar 2005

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.

Catiebugbee
Posts: 14
Joined: Aug 2010

It seems a bit hard, doesn't it, when all you want to do is give back for the blood that kept you alive during your own treatment? But so it is...

Matty
Posts: 21
Joined: Aug 2008

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's picture
maryruth1035
Posts: 16
Joined: Mar 2009

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

My year 1952
Posts: 3
Joined: Jun 2009

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.

Catiebugbee
Posts: 14
Joined: Aug 2010

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!

cafe66
Posts: 1
Joined: Aug 2004

I was diagnosed in 1968 at a hospital in NY State. They did surgery to remove the tumor and then I had Cobalt Radiation Treatment then I went to the Children's Hospital in Philadelphia and Dr Koop did another surgery. This time it was to explore and see if the cancer cells were gone I have a big scare on my back.
The first surgery lasted 8 hours and the surgeon told my parents I had 50% chance of survival but I would be completely paralyzed because part of the tumor was wrapped around my spinal cord. After the surgery I moved my feet so they new I wasn't paralyzed.
My Mom would tell me that the nurses at the Children's Hospital in Philadelphia were not very patient. I was already 2 when they did the second surgery but I wasn't potty trained. The nurses complained that they had to change my diapers. I remember they had those beds with the high metal bars on them. I remember feeling as if I was trapped there. This hospital seemed very impersonal. I remember that I didn't know if I could ever go back home. The nurses didn't really explain what they were doing to me. I am not complaining because I survived cancer.
It was pretty traumatic being there and the medical staff told my Mom she shouldn't cry in front of me. I still have a few memories and I wasn't even 3 years old yet. At the same time I am very grateful to the medical staff that allowed me to heal from cancer.

JeannieRu's picture
JeannieRu
Posts: 4
Joined: Aug 2011

I was 3 in 1960. Went through the cut it out thing three times with Cobalt 66 radiation. I've had some major issues because of the radiation to my neck, chest and back.

Have you had problems from the radiation?

Jeannie

KY Girl
Posts: 1
Joined: Jun 2013

Jeannie, i was diagnosed in 1958 with neuroblastoma when i was 18 months old.  I had a tumor the size of a grapefruit pushing up against my right lung.  I had surgery and follow-up radiation.  I'm curious if the health issues you have are similar to mine.  I have diminished lung capacity, and aortal stenosis.  Neither are causing me too much problems yet.  I have other issues, too, but those are the most serious.

Would love to hear back from you, as i have never talked to anyone else who had this.

Judy

 

scutchgrass
Posts: 4
Joined: Feb 2009

Hi!

 

I too am a female survivor from the radiation treatment in 1962; I was diagnosed when I was 9 months old. You are sooo right about neuroblastoma being the gift that keeps on giving. I have had tumours removed from my ovary equivalent to a 5 month pregnancy which had indeed calcified. I had tumours removed from both breasts and more recently was diagnosed with lymphoma. I decided to take the fight to the enemy. I read everything on tumours; what makes them grow etc. I no longer take sugar (white poison!!!) I read a fantastic book 'World Without Cancer' and take vitamin B17 religeously. Also, linseed, brazil nuts, hemp seeds, tumeric, almonds etc. I found they work!!!! The lumps in my neck disappeared after approx 6 - 8 weeks. I realise I need to monitor the type of things I eat; but if it enables me to live, it's a small price to pay. Please let me know how you are doing?!! LIVE LONG....................Smile

 

 

scutchgrass
Posts: 4
Joined: Feb 2009

Hi!

 

I too am a female survivor from the radiation treatment in 1962; I was diagnosed when I was 9 months old. You are sooo right about neuroblastoma being the gift that keeps on giving. I have had tumours removed from my ovary equivalent to a 5 month pregnancy which had indeed calcified. I had tumours removed from both breasts and more recently was diagnosed with lymphoma. I decided to take the fight to the enemy. I read everything on tumours; what makes them grow etc. I no longer take sugar (white poison!!!) I read a fantastic book 'World Without Cancer' and take vitamin B17 religeously. Also, linseed, brazil nuts, hemp seeds, tumeric, almonds etc. I found they work!!!! The lumps in my neck disappeared after approx 6 - 8 weeks. I realise I need to monitor the type of things I eat; but if it enables me to live, it's a small price to pay. Please let me know how you are doing?!! LIVE LONG....................Smile

 

 

scutchgrass
Posts: 4
Joined: Feb 2009

Hi!

 

I too am a female survivor from the radiation treatment in 1962; I was diagnosed when I was 9 months old. You are sooo right about neuroblastoma being the gift that keeps on giving. I have had tumours removed from my ovary equivalent to a 5 month pregnancy which had indeed calcified. I had tumours removed from both breasts and more recently was diagnosed with lymphoma. I decided to take the fight to the enemy. I read everything on tumours; what makes them grow etc. I no longer take sugar (white poison!!!) I read a fantastic book 'World Without Cancer' and take vitamin B17 religeously. Also, linseed, brazil nuts, hemp seeds, tumeric, almonds etc. I found they work!!!! The lumps in my neck disappeared after approx 6 - 8 weeks. I realise I need to monitor the type of things I eat; but if it enables me to live, it's a small price to pay. Please let me know how you are doing?!! LIVE LONG....................Smile

 

 

DarcieG
Posts: 1
Joined: Sep 2009

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
Posts: 12
Joined: Aug 2009

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
Posts: 12
Joined: Aug 2009

http://www.sciencedaily.com/releases/2009/07/090731191140.htm

Catiebugbee
Posts: 14
Joined: Aug 2010

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 :)

Carlas
Posts: 3
Joined: Dec 2010

I can relate to you having beeen worried about the future of cancers, I was the same way as a teenager. I am now 44 years old and have had no reoccurance of any cancer. I was 18 months old when Ohio State University hospital did my neuroblastoma (3 tumors). I was followed every 6 months by Columbus Childre's Hospital until I became an adult. I would recommend focusing on the positives and be proud that you are a survior. Become involved in fun things to help with decreaing anxiety. I am 42 years cancer free and counting.

Catiebugbee
Posts: 14
Joined: Aug 2010

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.

moonkai
Posts: 4
Joined: Nov 2010

Catiebugbee, I think you are my twin hahaha. I just joined this page in hope I would find someone out there who has a similar story to myself. Thank god there is !!! I too had neuroblastoma, I was diagnosed with stage 4 at 6 weeks old in 1981. 13 years later I went into remission. The doctors told my parents that there was a very slim chance that i would make it to 6 months old. I live in Australia and for the life of me I can not find a person who has a similar story. I was told that I was going to be intellectually disabled, blind and infertile. I have proved them wrong on all 3 accounts. I fell pregnant accidently at the age of 18. I never really worried about the pill because they had said I couldnt have children. And since then I have had 2 more beautiful kids. Abeit Im a single mother, but wouldnt have it any other way. Im also a nurse and a photographer. So my eyesight cant be too bad haha.
My mother does not talk to me about what happened when i was sick, I think she finds it too hard to talk about, I have approached her a few times, but like you was told to move foward. How are you supposed to move forward when you have such a huge void in your childhood. I have always felt different to other children. I have scars that i was unable to explain to friends when i was little, so it was just easier to hide my body ( and I have done this to this day) I started puberty when i was 5 ( not period, just everything else)I thought that it was normal until I had a sleepover with friends one night.
I also have a high IQ, but I also have blonde moments where the simpliest things are hard to figure out ! maths is not my forte, so when everyone had posted that, it then made sense to me. I would love to chat with you sometime to we could swap more stories xox jade.ash@hotmail.com, please feel free to email me anytime xoxo

Catiebugbee
Posts: 14
Joined: Aug 2010

I wish CSN had sent this to my homepage! I ended up finding it when I went back through this forum topic... I'll send you an email now :)

Kathryn824
Posts: 1
Joined: Aug 2010

Hi I'm Kathryn. I was diagnosed with neuroblastoma when i was 2 years old in 1994. I had stage 3 or 4. I am now 18+ years old and healthy. I still am a little embarrassed of my scar which is about a foot long across my stomach. When i went to donate blood, at first they didn't know if i can or not but eventually they accepted me. It's nice to know there are other neuroblastoma survivors out there somewhere.

jillebob
Posts: 12
Joined: Aug 2009

Welcome to the group. Glad there is more survivors out there..

indiareynolds
Posts: 2
Joined: Oct 2010

I am still reeling from finding this page...so much now falling into place...the math phobia...even with a high IQ...I was diagnosed on my first birthday - a Saturday morning, September 26th of 1965 when I could no longer pass urine. A tumor the size of a small orange was found free-floating in my abdomen right in front of my spine. It was "resected in situ" on Oct. 13, 1965 and I was sent home with less than a 30% chance of survival past my 15 month milestone. I had not "pulled up" in the playpen nor made any attempts to walk... I clearly remember waking up in the hospital crib, it's green bars holding my feet up so I wouldn't tear the stitches...after crying "Mommy up!" all day, they finally untied me and I proceeded to run everywhere. Due to the poor prognosis of all NP patients at that time, it was recommended (after I survived another two months) that I be placed in a clinical trial at MD Anderson in Houston where I was given a 3000 RAD Tumor dose to the abdomen and took Cytoxin orally, 4X daily for 24 consecutive months. Although I have had no recurrance of the original tumor, I have had bilateral radiation necrosis which caused the growth centers in my femur(s) to slip and so were surgically pinned and I spent from 1973 - 1975 on crutches, and then in a wheelchair. After having to learn to walk again twice before my 11th birthday, I later underwent bilateral total hip replacement and now have better range-of-movement than before due to the diminished size of my pelvis/hips post radiation. I also have lost all of my teeth but have a fabulous pair of fake ones and never have to worry about flossing :) Sorry for running on but I am a bit overwhelmed at finding ANYONE who has ever heard of NB, let alone survived it. I have found my soulmates at last!

T.M.M65
Posts: 6
Joined: Oct 2010

My NB was found at 15 month until I was 7yrs. I was treaded at fairview hosptial in Cleveland Ohio, now it's Cleveland Clinic. I had 2 great doctors their names were Doctor Dale Van Duzan and Doctor Edward Kilroy. When it was all said and done They removed my pericardium around my heart,scraping of my arota, 7ribs ,half lung, muscle mass,breast tissue, My scapula never grew. I had Radiation/chemo I was a gunnie pig! I have always want to know how many there are of us?
This nasty disease that tears a person apart phyically and mentally. My whole life I have woren a mask. I call it my happy face, when felt like crying ,hated ,unloved, looked for acceptance. No child should ever feel this pain but back the we didn't have couciling for Parents,Sibiling,Families.
I was in a room that no one could come to hold me because of all the tubes all i can remember is bits and pieces like People looking at me threw a glass window, Adults talking to Mommy and Daddy.
Mommy starts crying and Daddy looking at me and smiling then they would come in and kiss me with where mask on and tell me how much they loved me. I think that's were I learnd how to wear my mask so well.
Then come my siblings came in to my life, My first sister would see me on and off and all she knew is that I got speical things like gifts and cards. She grew up resenitig me for it. Then came my baby sister She grew up protecting me from bullies and hateful people. They were tought to protect me and was always told becareful don't hurt her wacth out for her bad side. Then back to the hospital for me this went on for years.
I met a new friend on F.B link and She found this site and told me I am so glad to find there are other like us more later

jillebob
Posts: 12
Joined: Aug 2009

I posted before that I am a neuroblastoma survivor
I recently went to a neurologist to be seen because I started having seizures in my sleep. I was working one day and collapsed at work and had a grand mal seizure in front of a surgeon. Thank god I did because he documented everything.. I have had seizures in the past. Only for them to state that I am lacking in sleep because all tests came back fine, EEG's and CT scans and it was if I really didn't have them though my husband seen it and my youngest daughter was the one who found me sleeping on the couch. My oldest daughter who is 21 now started having seizures at the age of 2. I actually had to video tape her for the doctors to believe her. Well when I seen the neurologist she went through my family, past childhood illness, etc.. She couldn't understand why this was happening to me. I was soooo scared she was going to state that maybe I had something going on which cancer was one of my thoughts. She asked about my daughters.. The oldest having epilepsy (only in her sleep also) then she asked about my younger daughter.. she asked if she had any problems growing up.. then she asked if she ever had a seizure.. I stated she did when her fever was high when was sick. She looked at me. I was so upset. She stated "I know what your problem is.. I believe...your genetics.. Your bodies can't take lack of sleep..stress...etc.." She scheduled a brain MRI just in case. The results came back and there was nothing wrong. My husband was relieved also because I think he thought I had a brain tumor. So mine must be a genetic thing. AS far as math.. I was an algebra tutor is school. I love math. English on the other hand..I can't stand and haven't done very well at it. I had my seizures down to where I could tell I was going to have one days before. I would wake with a headache and I couldn't sit still. I love to cross stich. But I couldn't. I would start and have to put it down within 3 minutes. I also have some form of OCD. I worry alot about if I will get cancer again. I had a benign lump removed from my leg when I was about 26 years old. I thought I was going to die. I was so happy to get the result that nothing was wrong.

Catiebugbee
Posts: 14
Joined: Aug 2010

Same here! It's almost like I have found family, the real family I belong to...

ErinNicole
Posts: 1
Joined: Nov 2011

HI my name is Erin I am 21 and a Neuroblastoma survivor I was diagnosed at the age of 9months with stage 4. My body is marred with the scars of a debalking, several line placements, an exploratory surgery to my left shin, and numerous small round marks to my lower back from bone marrow testing. I have been in remission for 18 years and had thought I had reached the point where Neuroblastoma couldnt hurt me any more. I am legally blind in my left eye from pressure to my optic nerve provided by a tumor, but that was my only lasting affect from my bout with cancer. However last year I fell very ill and my lack of an Adrenal gland was uncovered. During my debalking it had been removed, yet I was uninformed of this. My remaining adrenal gland does not function properly leaving me adrenaline insufficient. I now am on a daily medication that if skipped could send me into a "crisis" and potentially kill me. I am so frustrated with my physical and mental limitations. After i went into remission my parents were told i would be short, stupid, socially awkward, and much worse. Growing up i was a bit eccentric yet still thrived. I played the trumpet, basketball, served on student counsels, FFA leadership roles, showed live stock, attended youth group, was in honors classes and more. I have always had lost ofloved ones around. My family is very supporive and willing to tell me all about my illness. Yet I tried for so long to forget it. I am very high strung an prone to panic attacks. I have sensory memories from my bout with Cancer and things like florescent lights, white rooms,specific tone my mother has, trigger the sensations of that time. I feel almost as if I am haunted by the emotions of a toddler. I work closely with Children's Miracle Network in my area to raise funds for research to find cures and treatments for todays sick kidos. Yet, i have never met another Neuroblastoma survivor. I have so many questions and stories i would like to share. This evening I have wept for you in sadness and gratitude for your your plights adn survival. Please keep me in you prayers and include me in your conversations. I can see how this is an excellent opportunity for bonding and internal growth. I have often expressed my feelings as "broken" because i dont know how to ever get to a normal state of being. Normal people dont cling to a 20yr old Pooh Bear when the day has been so long and hard that the whole room melts away and its as if i am strapped to a board with a needle in my back and my mom is stoking my hair saying "just one more". Normal people dont forgo sad because its just easier to be mad. Normal people havent been told their whoel life they are put here for a reason, God allowed them to survive to accomplish something great and yet a 21 still haven't got a clue...I am inspired that so many of you have children because i so badly want to be a mother. Mine has been my everything all these years and i so desperately want to pass that love and legacy on to another life. ...Well enough of my sad story for one night. Thank you again for your honest life stories and i wish you all the best. hope to talk soon!

Melntez
Posts: 1
Joined: Jun 2011

Hi all,

As a mother of a child diagnosed with Stage 4 Neuroblastoma in Sept 2006 (just before his 2nd birthday), I am so, so happy to read all your posts & discover how many of you there are!! Imagine how many there are out there who haven't found this site yet!!!

My son Tyler had an 8cm tumour removed from his abdomen & still lives with several lesions in his liver. He is almost 7. At diagnosis we were told he had 10-20% chance of survival. He had a couple of surgeries, high dose chemotherapy, stem cell transplant & radiation. In June 2007 we were told he had relapsed & were given perhaps a couple of months!! It's now been 4 years & it seems that diagnosis may have been wrong!!!

As a parent of a NB child there are ALWAYS so many fears & concerns, however, I will never keep his cancer a secret from him no matter how much I would like to try to forget about it. Life changed the moment he was diagnosed & was never, ever the same but he is so incredible & amazing (as you ALL are) & getting through this beast of a cancer is something to be PROUD of, don't ever be ashamed of that or any scars that you may have!!

I now wonder about the long term side effects that Tyler may face. I used to get upset thinking about the fact that he will most likely never be able to have children & am amazed that some of you have. I consoled myself by thinking that if he is still with us when he is old enough to have children then we will deal with it then & we'll just be so lucky to still have him!!

So far at school he is doing great & is enjoying sport & living a normal life. I'd say the thing we notice the most with him is that he can become very angry & very sensitive - very easily, but mostly he is a happy, normal boy.

I have a website that I kept during Tyler's journey that you may like to visit: www.4tylerjames.com

I will always be amazed at just how far Tyler has come especially as I know (& read of) many children daily losing their battle to neuroblastoma (& other childhood cancers) but I want to thank you all for giving me MORE HOPE that Tyler can oneday join this group himself as a LONG TERM SURVIVOR : )

We have scans coming up next week - the nerves are setting in . . . wish us luck xxxxx

moonkai
Posts: 4
Joined: Nov 2010

Hi Kathryn,
I too had neuroblastoma. Stage 4. I also had a scar that goes across my stomach ( one side to the other) I still feel funny about my scar, but i think its more about what other people will think if they saw it. Once i finished school i didnt worry as much. I have donated blood also, they accepted my without any questions. Its nice to know you can give back xox

Carlas
Posts: 3
Joined: Dec 2010

This is surprising, because in High School I was told I could never donate blood due to my cancer history.

eanunez
Posts: 1
Joined: Aug 2011

my daughter is 21 months old and was recently diagnosed with stage 4 neuroblastoma. the tumor encased her left kidney so that had 2 b removed 2. she is about 2 start her 2nd round of chemo. i've read the list of possible side effects of all the drugs shes been given & i've spoken 2 the doctors but i would like 2 hear from survivors. when my daughter beats this i would like 2 prepare for any other obstacles she may come across. im particularly interested in the female perspective. Thank you

jillebob
Posts: 12
Joined: Aug 2009

oops

jillebob
Posts: 12
Joined: Aug 2009

Head on over to Facebook.. There is a group that are neuroblastoma survivors and other cancer issues in the groups page. Just search it.. you must be registered on Facebook...This is the site for neuroblastom survivor site...might keep you informed about the future...
https://www.facebook.com/home.php?tab=4#!/groups/2255398912/

jillebob
Posts: 12
Joined: Aug 2009

Head on over to Facebook.. There is a group that are neuroblastoma survivors and other cancer issues in the groups page. Just search it.. you must be registered on Facebook...This is the site for neuroblastom survivor site...might keep you informed about the future...
https://www.facebook.com/home.php?tab=4#!/groups/2255398912/

Aquagirl18
Posts: 45
Joined: Apr 2003

Thanks its always good to connect with other survivors,I'm on facebook and didn't know there was a group. I am on the N.C.C.S page though and Curesearch.

Aquagirl18
Posts: 45
Joined: Apr 2003

Hi reen, I am dealing with the same issue. I have very little information about my diagnosis. I do know that it was stage 4 and I was 13 months old when doctors told my parents the news. I had chemo and radiation and one of the drugs was experimental and it caused my heart to fail. I have been living with cardiomyopathy ever since. I had surgery to remove my kidney and adreanal glad. In also have many other late effects from my treatments. I was treated in what I call the "dark ages" in the late 70's 80's. (I am 32 now)The hospital I was treated at was able to give me some info on the drugs I was given but I have no file and there is no other information.

Lukemcglennon
Posts: 4
Joined: Jun 2012

Hi, i am a 21 year old boy who was diagnosed with NB in january i have had 5 rounds of chemo and waiting surgury, it has no n-myc amplification i am searchin for long turn survivors who was diagnosed at a similar age to me to give me a little bit of hope thank you

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