survivor of childhood cancer

lori17 said:

my daughter had medulloblastoma
when she was four. I will tell her about this website. She is now twenty-six years old

medulloblastoma
Hi Lori17

As a mother of a child with medulloblastoma, would you be happy to speak to me?

I need advice from someone who knows what im going through with my 6yr old son..

Shellbell81

swn1123 said:

I am a 30 year survivor of cancer. Diagnosed with Ewing's Sarcoma at the age of 15. Treated with surgery , chemo, and radiation at M.D. Anderson in 1973 and beyond. I am a memeber of the Long-Term Childhood Cancer Survivor's Study conducted by the University of Minnesota. If you want to talk, let me know!!

Please contact me
Hi my name is Rita , my son is Luca, he was dx with ewings in 2010
7 1/2 he's 9 now he had chemo, radio, and surgery .
Life has returned normal for him, but I live In fear , I always searched
Online for long term survivors of ewings, was not easy. I would find stories that were
Dated and no contact info. I would love
To hear from a long term survivor !

benwonderin said:

Me too
I was diagnosed with a brain tumor when I was almost four years old. I am now in my mid twenties. It has been a long road. I haven't ever met someone who had a brain tumor when they were young and lived to grow up. I had a medulloblastoma. Would like to chat with other brain tumor survivors.

Medulloblastoma
Diagnosed at age 14 with a Medulloblastoma, now 23 and doing great. I've met only one other person at college who had the same, but at a much younger age. Let me know if you still want to chat.

I'm a survivor

Hi, I was diagnosed with rhabdomyosarcoma in'90. Been in remission for 20 years and I'm 25. Would love to talk with some other survivors

Diagnosed again

I am a cancer survivor and patient was again. I was first diagnosed with Soft Tissue Sarcoma or Ewings sarcoma, at age 11. Now 7 years later, I find out I have new cancer: Osteosarcoma. Around the same sight. Back with my first diagnosis I did many chemo rounds and radiation therapy. My doctors believe it was the radiation therapy that caused this new one. I must admit, I was angry at first..and before this diagnosis I have been struggling with major depression and anxiety, so now I feel at a complete loss and even contemplated whether I wanted to do chemo again or not (knowing the consequences) I understand there are many of you that went through tougher obstacles, but its been so hard on me to accept it and go on with treatment because it was hell. When I was first diagnosed and treated I didn't really understand anything, but now I'm older and understand the events going on. At the same time I'm beating myself up with guilt. Even when I told my mother I didn't want to do it anymore, I knew I had to because one recent experience. I went to a store with my mother and sister after my first round of chemo, and I wasn't feeling well so I sat down. A little boy sat next to me and just started talking to me, and asked if I was in school still and I told him that I was sick with cancer and he told me his dad had passed away from cancer in 2010. Despite me not wanting the chemo, I knew the words that flew out of my mouth were true and my final decision. I responded "Well I'm going to beat this one for your dad." And he smiled and said thank you. I'm going to continue with treatment reluctantly at first, but I know I'll kick myself back into gear. 

rory said:

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

Rory

Thanks for the info!

I'm a survivor of Rhabdomyosarcoma which I was diagnosed with at age 12.  I'm currently 51, and just starting to have some major late effects due to my treatments.  Thank you so much for the info on the book.  I am definitely going to check it out!  For years I'd sort of forgotten about the whole thing, and didn't really want to talk about it.  Now I'm having to face the music once again, which is what it is, and I'll do what I must do,  I just don't want to be ignorant about the whole process as I begin to deal with more and more doctors and hospitals.  I do not like giving my care over to a doctor without my direct and intentional participation.  Sounds like this book might be a good place to start.  Thanks again.

Mobjack said:

Thanks for the info!

I'm a survivor of Rhabdomyosarcoma which I was diagnosed with at age 12.  I'm currently 51, and just starting to have some major late effects due to my treatments.  Thank you so much for the info on the book.  I am definitely going to check it out!  For years I'd sort of forgotten about the whole thing, and didn't really want to talk about it.  Now I'm having to face the music once again, which is what it is, and I'll do what I must do,  I just don't want to be ignorant about the whole process as I begin to deal with more and more doctors and hospitals.  I do not like giving my care over to a doctor without my direct and intentional participation.  Sounds like this book might be a good place to start.  Thanks again.

Late effects

Darn, I was really hoping I would only have the late effects I already have now in my early 20s, not more even later in life. We don't have any follow-up or late effect studies or clinics where I am from, so I have just pushed the whole experience out of my life and moved on around it. I, too, will have a look at this book incase I have to start dealing with more than just primary health care providers for managment of late effects.

aliciamp22 said:

Hello,
I am a Childhood
Hello,
I am a Childhood Survivor of ALL Leukemia. I was diagnosed when i was 15years old, 2 weeks from my birthday. That is one birthday present i could have done without. I am 22 years old now and i am coming up on my 4th year cancer free in July. I am still looking for someone that has been through what i have and around the same age. no one else can understand what you have been through unless they have gone through it too.

Hi Alicia

I am also 22-years-old. I had a different cancer (neuroblastoma) and at a different age (4 years), but your last sentence really resonated with me. While I have always been somewhat different (I seemed older and wiser for my age since cancer, never quite on the same path as other kids), it is now that I am really finding it hard to feel understood as a young adult studying at university to become a health professional. I always feel slightly out of step with the others in my course, and I feel I couldn't even talk about it with any of them even if they wanted to know. It really is true that no one can understand unless they have gone through it, and it feels like no one in my life understands that either!

Aquagirl18 said:

Childhood cancer survivor
Wow all of you are amazing. I am so glad I found this website and I just found this discussion today.
I don't know what to say so I'll start by telling a bit of my story.
I am 29 years old and I was diagnosed with Neuroblastoma stage 4 at around 13 months of age.
I was treated in what my doctors have called the dark ages (1979-1980's) I was treated with chemotherapy and radiation because I had tumors on my kidney and adreanal gland, I had surgery to have them removed and the tumor also matastized to my skull area. They used radiation on my skull and lower chest/stomach area. Then my parents were told about an experimental drug and it caused me to go into heart failure. My cancer was wiped out and I have lived with the late effects of my treatments ever since. I have congestive heart failure its also called cardiomyopathy and disabilites in math and science. I grew up as a child feeling like a small adult and in a way my childhood was taken away. I had to grow up fast and I felt different than my peers and I had trouble being accepted socially. Having had cancer changed my life. I learned a wisdom and a strength that I have carried all my life. I feel blessed to be alive. I am proud to be among so many survivors and I strongly feel we are here for a reason.

Me, too! It's really late at

Me, too! It's really late at night right now where I live and I am very tired, but before I log off here I just want to let you know that I also had NB, but at age 4 years, and so much of what you said sounds like my life!

Hi - I am a 33 year old

Hi - I am a 33 year old medulloblastoma survivor diagnosed in 1989 - survivors our age are rare but we are out here!!!!