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

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

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

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

I wish we did get a plaque. Thanks for the reply. It seems my post was sitting here for a long time with no repllies. I started to feel like maybe i was somekind of inigma, like noone makes it to 20+ years. I felt kinda lonely, like i was the only one. It's nice to know there are others out there, not that any of us want to have to be here, (having been thru cancer that is.)

mbundgus
Posts: 14
Joined: Nov 2006

I agree about the plaque... I just rounded 46 years --out from Childhood Hodgkins Lymphoma - 32 Years Thyroid Cancer - 11 years Spinal Meningioma, and I just could not pass the Breast Cancer ride -- 9 years ago. Yes ! I agree where is our Plaque. Sometimes I want to scream it from a mountain or top of a building or definitely at the meeting at work -- Hey !! look at me I have so much to be proud of. Thank you for letting me shout. I just turned 50 this year !

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

You've really been through it! you really deserve that plaque!

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

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.

mo2968
Posts: 2
Joined: Oct 2006

Hi,

I am a 35 year survivor of Hodgkin's disease. I was diagnosed at age 7. I am also a 7 year survivor of Rectal Cancer. It is so nice to see these numbers and give hope to those batteling this terrible disease right now.
Maureen

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

Thanks for the reply. It seems my post was sitting here for a long time with no repllies. I started to feel like maybe i was somekind of inigma, like noone makes it to 20+ years. I felt kinda lonely, like i was the only one. It's nice to know there are others out there, not that any of us want to have to be here, (having been thru cancer that is.)
It is nice give hope to those going trhu this thing.

mbundgus
Posts: 14
Joined: Nov 2006

Hi Maureen,

How are you ? Finally a match ! I am a 46 year Hodgkin's Survivor. Wow ! Nice to meet you. I was diagnosed just before the age of 5. If you would not mind I'd like to find out more about the treatment you received... Ok if not.I received Chemo and radiation after they removed 3 malignant tumors from lymph node areas. The therapy years later gave me Thyroid Cancer, various Non Malignant Tumors, a Spinal Meningioma and Breast Cancer. Through it all I have been healthy. : ) I just turned 50 this year.

Matty
Posts: 21
Joined: Aug 2008

I am 43 years post teatment, I do believe in miracles. Diagnosed at 4years old with a malignant brain tumor(ependymoma). Underwent surgery, and radiation.

SueBIE2
Posts: 7
Joined: Oct 2004

Wow Matty, you've got me beat by 3 years.
I'm a 40 year survivor of cancer of the salivary gland, diagnosed at age 8.
There aren't many of us out there, thanks to the slash and burn techniques in the 60s. I'm thankful my surgeon was as stubborn as I am!! He did a great job.

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

Just when i was starting to wonder about fellow childhood ca brain tumor survivors. you got me beat for years past.

BigSur4ever
Posts: 1
Joined: Feb 2012

I was diagnosed in 1952 when I was 6 mos old with a Wilms Tumor. Had my entire left kidney surgically removed and endured intensive cobalt therapy treatments thereafter. In 1981 I had Ovarian cancer and had intensive surgery with subsequent radiation treatments. Still alive! Hard girl to kill, I guess! Thank the Good Lord! I am 60 yrs old now and in very declining health, just diagnosed with a near non-functioning thyroid and Stage 3 Chronic Kidney Disease (in my solitary kidney). I lost two children, premature births at 7 and 8 mos respectively in 1972 and 1973. They both died within hours of birth due to lung development complications. Was very health actually till I turning into my 40's. Then things started going south. Intense chronic pain, severe wasting (muscular and skeletal) of the left side, spine, left hip area, severe degeneration of the spine ongoing, accelerating as I am aging. But....I'm still here, still laughing and loving, still have my incredible loving family and my fabulous friends and my faith in God is stronger than ever.

kr1sse
Posts: 3
Joined: Mar 2009

Greetings. I just recently joined the blogs, and am pleased to see so many people put there who have gone through life well for the most part since having childhood cancer. If you would like to share stories, or if you have any questions, let me know.
Cheers.

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

Nice to see you join in. I'm at 26 years past diagnosis of a cancerous brain tumor (medulablastoma) and 7 past a noncancerous tumor on the top of my brain caused by the radiation. What kind of cancer did you have?

Kerri Lynn's picture
Kerri Lynn
Posts: 17
Joined: Jan 2009

Well I dont have 20 years under the belt but I am coming up on my 16-Year Anniversary on April 10 so I thought I'd throw that out there! Congrats to all those who have been passed 20 years. I hope all the best for everyone and many good years to come!

Survivor86's picture
Survivor86
Posts: 18
Joined: Apr 2009

Are you dealing with any late effects? Do you know of any follow up facilities that help the uninsured, I live in TN. Smokey Mountains, the doctors here don't know about the long term health problems I'm having.

Thanks,
Survivor86

feather80
Posts: 11
Joined: Apr 2009

Hello everyone,

I had leukemia 23 years ago, when I was 6.
It's nice to see that there are so many people who are more than 20 years since diagnosis.
And it's amazing to hear about people who had childhood cancer 40 years ago! Wow! I'm impressed! It's so nice to hear that children were cured in those days as well. Congratulations!

Feather

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

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.

Aquagirl18
Posts: 45
Joined: Apr 2003

I'm 30 and I had my cancer when I was about 13 months old. I have been out of treatment since I was maybe 2 or three years of age. I'd like to find other childhood cancer survivors too. If anyone wants to talk we can exchange messages here or trade e-mail addresses. Nice to meet all of you.

deedee0119
Posts: 5
Joined: May 2009

Was diagnosed with Wilms tumor when I was 17 months old. Mom was told even after surgery and chemo and radiation that I would have a 30% chance of living -- and that if I did I would never have children. Well I am now 45 years old...have three healthy beautiful boys -- a 20 year old and twin 19 year olds...and am still here!! Having a lot of latent effects from chemo/radiation...anyone else??? Would like to know I'm not the only one.

Survivor86's picture
Survivor86
Posts: 18
Joined: Apr 2009

Congratulations, 43 years that's great! What type of late effects are you having? No your not alone. It's wonderful you were albe to have children!! I also am experiencing the late effects of chemo and radiation, I was 11 years old when I was diagnosed with stage IVB Hodgkin's My parents were told that I would probably die, but I beat the odds, and have been in remission for 23 years. I was unable to have children and had to have a hysterectomy when I was 28 yrs. old, I have terminal IC (bladder disease), I experience pain daily in my joints, bones and muscels, I have nodules on my tyroid, that the doc's said they would just watch, and spots on my breast they said they would also watch. I have had sever memory loss, I have had scare tissuse removed twice from my abdomen, do to the radiation. I notice you are new to this site, I have found another site that you might find much needed support (LT-SURVIVORS@LISTSERV.ACOR.ORG) feel free to e-mail me if you want to chat @ bmrigney29@aol.com

Brandie

BlueKari
Posts: 2
Joined: May 2009

This Memorial Day it will be 23 years (I'm 29 now) since my left leg was amputated and I was diagnosed soon after. My mother was told by the doctor that I had a pulled ligament and to go home and wait it out. Since he was a doctor my mom trusted him (she still feels guilty for that). A few weeks later my tumor was the size of a smaller grapefruit. I was rushed that night to a Sacramento hospital and my leg was amputated the next morning. I had Osteosarcoma which had spread to my lungs as well. I had two years of chemo and have been cancer free ever since. Although I'm always nervous it will come back. :(

I was told I couldn't have children but I have an absolutely beautiful 8 year old daughter that is the love of my life (sappy mom talk lol).

It's great to see all of your stories :)

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

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

Gene0440
Posts: 1
Joined: Mar 2006

Hi btcat..

Saw your post and thought I would drop you a line.

Diagnosed when I was 1 year old with Rhabdomysarcoma ( Bladder ) Cancer. Have had a great life. Ride Dirt bikes and snowboard on the reg. Live in Sunny Southern California ( Los Angeles Area ) and would love to share my story with anybody who is interested..

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

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

SHAN38
Posts: 2
Joined: Mar 2011

I WAS DX WHEN I WAS 3 WITH RHABDO OF BLADDER ALSO I AM EXPERINCING ALOT OF FATIGUE NOW AT AGE 37 WOULD LOVE TO TALK WITH YOU ABOUT YOUR LIFE AFTER CANCER NAD WBC IS STAYING A LITTLE LOW ALL DOCS SAY OK BUT IT IS FREAKING ME OUT A LITTLE WHERE WERE YOU TREATED

BrittaA's picture
BrittaA
Posts: 20
Joined: May 2009

Hi everyone, I have been cancer free for 17 years now – I was diagnosed with Hodgkins when I was 16. I recently started a blog, Cinco Vidas (http://blog.cincovidas.com/), as a resource for cancer patients as I found it difficult to find much information on treatment side effects. I’ll keep my fingers crossed for all the survivors here that we make it another cancer-free 20 years! Love, strength and survival, Britta

tesslynn32
Posts: 5
Joined: Aug 2009

I am 33 and have been cancer free for 30 years. Alot of the six flags parks are doing what they call a walk in the park to help raise money for childhood cancer and a cure for them, they have done it now for 2 years and i participated in both years and it was an awesome experience.

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

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.

liveformiracles's picture
liveformiracles
Posts: 15
Joined: Sep 2009

Hi, my name is Laura. I was diagnosed with ALL (Acute Lymphoblastic Leukemia) at 3 and I am now 23 years old. I went through 3 years of treatment, including chemotherapy and radiation. I struggle with some side effects from the treatment, but I view my diagnosis as a blessing and a way to help others. I also have two friends that are childhood cancer survivors and are in their 20s...we volunteer a lot with Relay for Life and Camp Sunshine. I love meeting people that are also cancer survivors and sharing experiences! Feel free to contact me ^.^

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

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.

BBdogs's picture
BBdogs
Posts: 36
Joined: Jan 2013

btcat,

Unfortunately I found this site because I have recently been diagnosed with anal cancer.  My son, however, had an astrocytoma diagnosed at age 2, he underwent multiple surgeries and radiation therapy.  At 21 he was diagnosed with meningioma(sp); most likely due to the radiation he received at age 2, this 2nd one was benign.  He is 32 and lives at home with me, probably always will/should.  Side effects from the radiation which at that time was whole head and spine have taken their toll on his life but at least he is alive!  I don't know what type of issues you are having but it would be interesting to hear.

Toshy's picture
Toshy
Posts: 23
Joined: Jul 2010

I was diagnosed when I was 7 in 1977. It was in operable as it was on my brainstem. I had radiation treatments in late 70's, chemo in early 80's. A couple of years after stopping chemo. I was told the tumor no longer showed up on the CT scan. Later MRIs continued to be clear.

I was told later I had been given 6 months to live and within a month or two it was 6 weeks... Although mine has been a hard life I'd say, it's been a very happy one!

I was diagnosised with an malignant astrocytoma but now the Cleveland Clinic doctor I've just seen is guessing it was actually a Medullablastoma( or ependyoma).

If you are interested in more details about my story see "my story" in my EXPRESSIONS.

God bless us all. (He already has!)

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

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

jandrmom
Posts: 2
Joined: Aug 2010

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

FunnyFace's picture
FunnyFace
Posts: 15
Joined: Oct 2008

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!!

FunnyFace's picture
FunnyFace
Posts: 15
Joined: Oct 2008

***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!!

dubc
Posts: 8
Joined: Apr 2008

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!

ccreader's picture
ccreader
Posts: 1
Joined: Apr 2011

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

lauralou222
Posts: 1
Joined: Apr 2013

I was diagnosed in 1973 at the age of 3 with Acute lymphoblastic leukemia (ALL) and was treated at NIH with Cranial radiation and chemo and went into remission until 1987 and relapsed.

After 3 and a half years of chemo in and out patient treatments with all the works... LPs and Bone marrows, (started college a year late and finished up while in college)  I went into remission right before my 21st birthday. I have been in remission since then.  It is wonderful to know that there are others out there like me.  Nice to meet everyone!

Taffyrn
Posts: 1
Joined: Apr 2011

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

crazy98
Posts: 25
Joined: Dec 2004

I know this is an older post but I had limb salvage. 3 to be exact! I had osteosarcoma. If you are still interested I can tell you all about my experiance! passingthetest98@aol.com I am 13 years cancer free!

lucyofnarnia
Posts: 4
Joined: Apr 2011

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"

Gliomadude
Posts: 7
Joined: Apr 2011

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.

allyhendrikson
Posts: 9
Joined: Apr 2012

I wasn't a childhood survivor myself, but my brother is--he's twenty nine! And we are so happy that he's engaged and getting married. He is such an inspiration to me. Thanks for sharing your story too! It's awesome to hear when other people find success with good compassionate doctors. On a side note, there is a site that has been in the news lately that I recently checked out (it's not meant for community necessarily) but I think it could have really helped my family with my brother's diagnosis early on--you can ask board certified doctors any health questions and they will respond (for free!). I haven't asked any hodgkin's related questions yet, but I wanted to share if you want to check it out! :) HealthTap is the name of the company, and I've asked a few questions about my own symptoms of certain health problems and doctors have been a real help! Managing my brother's condition would have been so much easier if we were able to access doctors in real time before making an appointment. healthtap.com is seriously going to change medicine.

I pray for your continued health and happiness Christy! :) Blessings.

Ally

harrietpeter
Posts: 6
Joined: Apr 2012

Check out this article: http://blogs.reuters.com/small-business/2012/06/28/tech-tonic-checks-in-with-healthtap/. It's an amazing mobile Health tech site called HealthTap which has been generating lots of press lately! It would be a great place to find information about childhood cancer from real doctors! This community is great too!

stevoa29
Posts: 2
Joined: Jun 2012

hi I was diagnosed with astocytoma of the spine (T12/L1) when I was 9yrs old Im now nearly 40, on no pain killers just blood preassure tablets,but it did leave me in a wheelchair, but I have my life so I cant complain :)

regards
steve..

nettecg
Posts: 9
Joined: Jul 2012

Took awhile to read through everyones posts. I hope some of you are still checking in on the forum.

I have been cancer free for 26yrs as of Feb 16 of this year. I was first diagnosed with leukemia (ALL type) Nove 19, 1983. Just a month and a half before my third birthday. Got to spend it in the hospital. Yippy! The treatment I had was a combination of chemo and radiation and I was part of a reserch group. So still go back for follow ups. And yes visiting the peds clinic at the hospital when as an adult (I am now 31) is a bit embarrising at times. But I shrug it off most of the time. As a couple of the nurses I had when I was treated have been at the clinic for years now. Sadly though the last of my Drs has recently retired. So there is no one left there aside from the nurses who know what I went through.
The treatment I had left me with side effects. Even though they found no cancer in my brain they had to follow protocol. It left me with a learning disability; I can't comprehend basic math and have a short term memory problem. A few years back I started to experience pain in my feet and a local oncologist thought it was risidual nerve damage. Those of the official diagnosis. Unofficialy I've experience fatige, joint aches, stiffness and muscle spasms almost all my life. Other than those things I have been mostly healthy aside from an annual cold and several bouts with the flu, bronchitis and tonsilitus ( still have them ) when I was younger.
I also have nerve damge in my limbs as well and a search for that led me to this forum. :) Yay so happy to meet you all!

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

I am 55 and had neuroblastoma at age 3.

mbundgus
Posts: 14
Joined: Nov 2006

That is amaizing...  How did they treat you ?  and have you had any side affect or other cancers since... ?  I celebrate 50 years... I had Hodgkin's Lymphoma in 1963. I was 4. I was treated with Chemo Therapy and Radiaiton. I currently have Breast METS in Bones and Liver, and currently on Chemo-therapy. I Had a soft tissue tumor which turned out to be Breast METS in 2011, Breast Cancer in 2000, Spinal Cord Meningioma in 1997, and Thyroid Cancer in 1976.  All of which believed to have been caused by the full Mantel Cobalt Radiaiton I received in 1963.    

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