Cancer Survivors Network

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.

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

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.................

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

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

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.

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...

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