Cancer Survivors Network - Are there any other 20 plus year since siagnosis childhood cancer survivors out there? - Comments

38 years after low grade glioma and radiation

Gliomadude — Mon, 16 May 2011 01:21:48 -0400

so there are others!!! great news! I was 11 when I got the news of my tumor after that I had
6 weeks of RT. just recently I started having weird symptoms (balance issues, etc.) now the docs suspect another tumor. looks like it is game on all over again. for another 38 years, I'm in. best to all and I'm so glad you're all here.

Hey everybody :)

lucyofnarnia — Wed, 27 Apr 2011 03:02:54 -0400

Husband and I are both 20+ year survivors.

Me: Hodgkin's, fifteenth birthday surprise, diagnosis August 1988
Husband: optic nerve germinoma, senior send-off at age seventeen, diagnosis January 1987

We are a really cute couple IMO, but carry enough meds to stock a small pharmacy, generally speaking....

Nice to see some company around here. :) I tell people I'm total old school: the days when bone marrows were performed without sedation even in pediatrics...when Zofran and EMLA and growth factor shots did not exist...when surgery was the gold standard for staging Hodgkin's...and when my hospital did not even have a cancer clinic; we operated out of the hospital's ER.

Yeah, been around the block, not too shy about telling the tale, either.... ;)

Late effects info available upon request.

Nice to "meet" y'all....

Best wishes,
"Lucy"

Almost 23 years

Taffyrn — Mon, 11 Apr 2011 14:31:02 -0400

I had osteosarcoma in 1988... They did a limb salvage... It was the first year they didn't just amputate your leg.... I don't have a knee but I have done well until Jan of this year when in had an injury at work... And they think I have a fracture but I am waiting on the ct results.... While seeing the ortho doc we discussed the possibility of my getting a knee and he says he can do it... It will just be painful and require lots of physical therapy. Am seriously thinking about getting it, but wish I knew someone else who had my kind of limb salvage and had the surgery. I have a 2 1/2 year old and am 42 years old now.... I was 19 when I was diagnosed with osteosarcoma and have been blessed with very good health since then and I work as a nurse practitioner now.
Heather

28 years!

ccreader — Thu, 07 Apr 2011 00:25:44 -0400

Hi,
I was diagnosed with Leukemia at 20 months old, was in treatment until the age of five, but have been healthy since.
I just found out about CSN and feel so blessed to have the opportunity to speak with others about cancer and share hope with people who are fighting the battle now.
Nice to "meet" you all!
Correne

Good to See

dubc — Mon, 04 Apr 2011 18:02:13 -0400

I'm glad to see all the survivors out there. I'm a 38 year survivor of childhood (two and a half years old) Medulloblastoma. I had brain surgery and received cobalt radiation treatments. I've had my share of side effects too. I was recently reminded by my father and a recent article, that my surgery took place early April 1973 (just when the World trade center opened it's doors for the first time). I'm really happy to see I'm not alone!

Hi

btcat — Mon, 20 Sep 2010 14:46:13 -0400

I wish we got a plaque or statuette or such. We just seem to get forgotten. I'm 27 years past dx. I had a party at 20 years, but 25 yrs went unnoticed. I think my mom wants to forget that I had CA . . . ., and it feels like the rest of my family has.

Hello

btcat — Mon, 20 Sep 2010 14:21:20 -0400

You're the first person who's story I read seems much similar to mine beyond the fact that we'e all adult survivors of childhood ca. I was diagnosed with a brain tumor from a CT scan I had. During surgery to remove that tumor a biobsy was done and the tumor was found to be cancerous. It was inside the top right ventricle of the spine and my cancer was labeled medullablastoma. I was 10 near 11 when this all started. I'm 38 now. I'm dealing with a lot of long term affects from the operation, radiation and chemo. I assume you have/are too. I'll give you my e-mail so we can chat. kitty.cat72@centurytel.net

: )

btcat — Mon, 20 Sep 2010 14:09:46 -0400

Hi! I thought since you left a note I'd say hi. I don't suppose that your friends are ca brain tumor survivors either. It's really nice to connect with other childhood cancer survivors, but I'd really like to connect with a childhood cancerous brain tumor survivor.

Hi

btcat — Mon, 20 Sep 2010 14:04:55 -0400

Tell me more about this "Walk in the Park" I'd love to do what I can to help with childhood cancer. Too many children experience cancer and we seem to fall under the radar with all the focus on breast cancer and other adult cancers.

Hi : )

btcat — Mon, 20 Sep 2010 14:00:15 -0400

Hi Gene,
I'm interested in your story. My e-mail is kitty.cat72@centurytel.net

Hello

btcat — Mon, 20 Sep 2010 13:58:08 -0400

Hi aquagirl,
I'd like to talk. My e-mail is kitty.cat72@centurytel.net

long term

btcat — Mon, 20 Sep 2010 13:55:52 -0400

Hi. It sounds like we're in the same boat. I don't know of any follow up facilities that help the uninsured. I'm trying to find help myself. My doctor doesn't seem to really understnd this stuff. I'm trying to find anyone who can help me.

Blessed to be able to say "Cancer free for 20 yrs and counting!"

FunnyFace — Fri, 03 Sep 2010 04:09:46 -0400

***SORRY I POSTED THIS TWICE FOR SOME REASON AND I DONT KNOW HOW TO DELETE A COMMENT***Hello, I was diagnosed with osteosarcoma the summer I turned 13 I am now 33 y/o. Had bone salvage surgery (I have an internal femur/knee prosthesis). Had a year of chemo. It was a tough road but I got through it with the help of the wonderful family, friends, doctors and nurses that God sent me : )

Congratulations to all survivors out there no matter how many years you have under your belt!!

Blessed to be able to say "Cancer free for 20 yrs and counting!"

FunnyFace — Fri, 03 Sep 2010 04:06:29 -0400

Hello, I was diagnosed with osteosarcoma the summer I turned 13 and now I am now 33 y/o. Had bone salvage surgery (I have an internal femur/knee prosthesis). Had a year of chemo. It was a tough road but I got through it with the help of the wonderful family, friends, doctors and nurses that God sent me : )

Congratulations to all survivors out there no matter how many years you have under your belt!!

23 years

jandrmom — Thu, 26 Aug 2010 21:36:44 -0400

Hey there!
I was dx with acute myelogenous leukemia at 17 in 1987...23 years out now!

I was dx with breast cancer in 2006...4 years and counting.

Nice to meet others who have been there - done that.

:)
Jackie

Are there any other 20 plus year since siagnosis childhood cancer survivors out there?

btcat — Wed, 07 Jan 2009 13:46:08 -0500

I'll be 26 yrs past dx in February. I'd really like to find some other childhood survivors that are 20 years or more past diagnosis. If you are, please reply to me here or better yet e-mail me at my member page.
God Bless,
Christy aka btcat