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30+ year childhood astrocytoma survivor looking for other Long Term survivors

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

I would like to communicate with anyone who was diagnoised with an astrocytoma early in life and is now an adult (say 20's, 30's and up).

I wouild also like to find a Long Term Effects doctor.

SAHM
Posts: 2
Joined: Aug 2011

Hi,
I came across this today in a google search because I'm thinking about writing a magazine article about my own experience, almost 30 years later. I had a cerebellar astrocytoma in 1983 at age 9. I don't have any lasting effects, except for some peripheral vision loss in my left eye. (At the time, I came very close to losing my eye sight.) And, I'm a few inches shorter than my sisters, so maybe some stunted growth. I had 2 surgeries (one to place a shunt for hydrocephalus and the second to remove the tumor). It was about the size of a golf ball, I'm told, so I'm very lucky. Even the doctor said I'm a medical miracle.

I think, as a childhood survivor, you don't always have a full picture of what happened. I'm thinking about asking for my records and/or making an appt with my neurologist who I haven't seen in about 6 yrs and doing kind of a "Brain Tumor Survivor, 30 Years Later" story.

Well, the first time I tried to post, it disappeared. I'll try this again. Would like to hear from you.

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

I am so glad to see that you are a survivor of AA, My daughter, now 13 has AA3. She has been cancer free for 10 months. Hers was also in the cerebellum and golfball size. I think writing a story about being a brain cancer survivor is a wonderful idea. Many people just like me need stories of hope such as yours. Dana Farber is a good place to start, my daughter goes there. She actually goes to the jimmy fund clinic in Dana farber. MD Anderson is also a good place for info. Good luck and I hope to read your story

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

Did you ever do your article? Go to the bottom of this page, I'm going to reply to myself todo some replying, updating.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

You might like to contact Dana Farber in Boston and see what they have in terms of Long Term of Late Effects Clinics in the U.S. There is the Perini Clinic there at Dana Farber who can help too, that is at the Lance ARmstrong Survivors Clinic. Any of those places can help I'm sure. Ask to speak with a nurse practitioner.

I did not have what you had and was diagnosed as an adult but it's easier to find a late effects clinic if you were diagnosed and treated as a child.

All the best.

Blessings,

Bluerose

huxley2006
Posts: 25
Joined: Oct 2010

17+ year survivor of Grade 2 PXA. Had a recurrence over a year ago but so far so good.

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

17+ years, AWESOME. I would give anything for my daughter to survive 17 years with this evil cancer. She has AA3. She is doing very well now. 10 months cancer free. YAH!!!

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

hope you are still doing well.! Check at the bottom of the page I'm going to reply to myself 8)

ASG
Posts: 4
Joined: Aug 2011

New Member,Long term survivor here Toshy,
For more than thirty years, there were no major side effects. But now, the long term radiation effects are appearing. The problems I have now are due, I am told, are due to the major amounts of radiation I had as a kid.
In 2007 I had very sudden hearing loss. It has gotten worse in the last two years, and though I still have some hearing, It is hard to function at times, especially at work! In 2019 I had thyroid Cancer, and the surgeries have caused other issues, but i am still truckin, and would like to know of your experiences. Thanks!

se2525
Posts: 1
Joined: Sep 2011

I've been searching for something like this forever. It's hard to believe that at 26 years old, I'm already 20 years post-op! My mother passed away almost 2 years ago, and was the one who was at every single doctor visit, every single MRI, and stayed in the hospital with me throughout my entire rehabilitation. She was my main link to any question or story I had about the whole ordeal, so I'm trying to just try to piece together things here and there to learn a little bit more about what it was like. glad i found this group!

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

read my reply at the bottom of the page (I think) to myself as I do some replying, updating

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

Go to the bottom of this page, I'm going to reply to myself todo some replying, updatin, ok?

huxley2006
Posts: 25
Joined: Oct 2010

I am an 18+ Year Survivor of Grade 2 PXA. I had a recurrence 1.5 years ago. It progressed to a grade 3/4 Malignant Glioneuronal tumor or GBM. Depends on the Pathology you read.

Now 42. And I am Still working full time, traveling and generally enjoying life.

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

what do you do? With my hearing, mobility, back problems I can't fathom what I could do.

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

Glad to see so many Long Timers! Sahm, Huxley. ASG, 2525, woohoo!

A little about me. It took me 5 years to get through college, I had to live on campus of a small school so I could take naps between classes and took minimum class load each semester. I also had to fight to get food plans waived due do my strange eating habits (can't stand peanut butter (smell) or rice (texture), don't like cereal or oatmeal...). I was lucky to eventually find a job as a substitute for daycare. That was awesome since I knew I'd never be able to raise kids of my own. Worked for 10 years until "it broke my back". Two years later had stroke. Lost the remaining hearing in the left ear and left side of my face and tongue are still numb today. Now going through another major hearing loss (right ear). I'm praying it is only temporary.

FYI, I'm on FaceBook now and started a private group called "Longest Brain Tumor Survivor?" I knew even before I started it that I was not (ever heard of George Plym?), I prefer to talk there(too many places to check in and with FB I think it's understood you read when you want and don't expect anything...) and if you'd rather not post to the group there, we can chat one-one-one.

smilee77
Posts: 3
Joined: Jun 2012

Hi There! I am a 40 year childhood cancer survivor of a Pilcystic Astrocytoma of the Cerebellum (Brain Tumor) Had the tumor removed in 1972 followed by 22 colbalt radiation treatments and now have long term side effects from the treatment. I was called the "Miracle Child" as i came out of the surgery with absolutely no side effects. Later on thoughHearing loss became one of them and I finally did get a hearing aide funded thru the government but it does not help my hearing loss. I am tone deaf and a hearing aide does not help me at all so i quit wearing it. 15 years after my tumor (1988)i had a (so the medical profession had to give it a name) stroke which was a weird one so i really do not think it was really a stroke but... left me paralyzed from the knee down to the tip of my toes on my right side and weakness on my upper part of the leg also. I was 28 years old. 6 years after my so called stroke (1994) i had a weird heart attack. I was 34 years old at the time and i baffled all of the doctors. I live in Alberta, Canada and they do not recognize childhood cancer surivors at all here. My neurosurgeon who operated on me since has passed away so i have nobody to back me up. And the cancer clinic here where i live and went too for many years and finally quit cuz they never ever did do anything for me when I had the stroke and heart attack but i did try to get back into it and the oncologist said to me that they only treat those who need help. He was quite rude to me.
I have had a hard time with the medical profession here in Alberta, Canada. I am now 53 years old and am needing help with house cleaning...grass cutting...snow removal and such stuff and have to pay for it out of my personal disability pension which isn't very much monies.
My hair on the back of my head never ever did grow back and the hair in front did grow back but is very baby fine hair. I wear a cranial hair prosthesis but also have to pay for it out of my own pocket as my insurance company will not cover it. I do not work because I suffer from sever fatigue and sun and heat really effect me badly. It goes on and on and on. I have been trying for years to get some sort of help but have not suceeded yet. It is just so frustrating and yes this is Canada where everything is suppose to be so great but isn't.

I can go on and on about my preoblems but i do not want to bore you to death! Hee! Hee!

My motto in life is: "Life Is What You Make It!" and i choose to do the best of what i got. I am a very optomistic person and always see the good that comes out of something bad!

Look so forward to hearing from you!
I also have poor dexterity in my hands from the radiation and it stunted my growth as i was 13 years old at the time. I never could have any children and never did marry as my ex fiance left me when i had the stroke. But am coping very well despite fighting with the government constantly! I always wear a nice smile on my face and am a very happy person and am so thankful to be alive! :)

smilee77
Posts: 3
Joined: Jun 2012

Hi There! I am a 40 year childhood cancer survivor of a Pilcystic Astrocytoma of the Cerebellum (Brain Tumor) Had the tumor removed in 1972 followed by 22 colbalt radiation treatments and now have long term side effects from the treatment. I was called the "Miracle Child" as i came out of the surgery with absolutely no side effects. Later on thoughHearing loss became one of them and I finally did get a hearing aide funded thru the government but it does not help my hearing loss. I am tone deaf and a hearing aide does not help me at all so i quit wearing it. 15 years after my tumor (1988)i had a (so the medical profession had to give it a name) stroke which was a weird one so i really do not think it was really a stroke but... left me paralyzed from the knee down to the tip of my toes on my right side and weakness on my upper part of the leg also. I was 28 years old. 6 years after my so called stroke (1994) i had a weird heart attack. I was 34 years old at the time and i baffled all of the doctors. I live in Alberta, Canada and they do not recognize childhood cancer surivors at all here. My neurosurgeon who operated on me since has passed away so i have nobody to back me up. And the cancer clinic here where i live and went too for many years and finally quit cuz they never ever did do anything for me when I had the stroke and heart attack but i did try to get back into it and the oncologist said to me that they only treat those who need help. He was quite rude to me.
I have had a hard time with the medical profession here in Alberta, Canada. I am now 53 years old and am needing help with house cleaning...grass cutting...snow removal and such stuff and have to pay for it out of my personal disability pension which isn't very much monies.
My hair on the back of my head never ever did grow back and the hair in front did grow back but is very baby fine hair. I wear a cranial hair prosthesis but also have to pay for it out of my own pocket as my insurance company will not cover it. I do not work because I suffer from sever fatigue and sun and heat really effect me badly. It goes on and on and on. I have been trying for years to get some sort of help but have not suceeded yet. It is just so frustrating and yes this is Canada where everything is suppose to be so great but isn't.

I can go on and on about my preoblems but i do not want to bore you to death! Hee! Hee!

My motto in life is: "Life Is What You Make It!" and i choose to do the best of what i got. I am a very optomistic person and always see the good that comes out of something bad!

Look so forward to hearing from you!
I also have poor dexterity in my hands from the radiation and it stunted my growth as i was 13 years old at the time. I never could have any children and never did marry as my ex fiance left me when i had the stroke. But am coping very well despite fighting with the government constantly! I always wear a nice smile on my face and am a very happy person and am so thankful to be alive! :)

SAHM
Posts: 2
Joined: Aug 2011

It's been 30 years this fall since I was treated for a cerebellar astrocytoma, grade II, and I wrote the article I had mentioned. An online medical magazine published it. Here's the link:

 

http://www.youandmemagazine.com/articles/remembering-childhood-cancer-thirty-years-later

 

If you're a long-term survivor of a childhood brain tumor, or cancer in general, maybe you'll relate to some of it.

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