Daughter's astrocytoma

dariad · New User Joined: 13 Aug 2007 Posts: 7

So here I was last year at this time wailing about my beloved mother's stage IV colon cancer. She died in September. This year, just to add insult to injury, the astrocytoma that our daughter presented with in 1988 has revived. She was 23 in 1988 and the neurosurgeon did a terrific job "coring out" the tumor and leaving her with all faculties intact. He told us at that time that if the surgery didn't work, our daughter had "maybe a year", as the tumor was wrapped around her central nervous system and pressing on her optic nerve. Well our Sue was a real fighter and there was NO WAY she was checking out at the tender age of 23. I think that sometimes just through sheer guts and determination, she beat that thing and 3 months after her surgery she was touring Europe with a girlfirend, carrying a backpack!

Well that was then and this is now. We just found out, from her latest MRI, that the tumor is growing again. This time she's having radiation treatments.............25 of them, starting tomorrow. 20 years is a long time and my memory is now hazy about the details of the original event (stress no doubt contributing). But I seem to recall that they had said the tumor was so slow growing that radiation was NOT an option because the tumor was growing slower than her brain cells and radiation would kill more good brain cells than tumor cells. But this time they are recommending radiation FIRST, surgery and/or chemo as a fall-back.

Because she's now a full adult (as opposed to a University student), she's not sharing a huge amount of information (also to spare us pain, I'm sure, as my Mum died in September, my Dad is failing fast and now her father, my husband, is ill as well.) But if you've stayed with me this far, I'm asking if anyone knows what kind of prognosis we're looking at and why they'd NOT recommend surgery but radiation. And what do you think her chances are? Did we just beat the damn thing into submission 20 years ago and now the ugly reality is back and we're going to lose her? I'm really uncomfortable with the radiation, based on a 20-year-old conversation. Has medicine changed that much that they can do this now without damage? How successfully? She recalls nothing of the original event, as the surgical trauma wiped out all THOSE memories, so this is something I'm carrying close to my heart but feel unable to discuss with her.

Thanks to anyone who repsonds with info.

artaran · Posted: Tue Jul 22, 2008 3:41 pm Post subject: Re: Daughter's astrocytoma

I just want to say how sorry I am to hear your news. I can't tell you why they opted for radiation first not knowing the details. I can only guess that they are hoping to shrink it before surgery. The usual protocol is surgery then radiation with daily low doses of temador followed by 12 months of higher doses of temador 5 days each month with a recovery period.

While I know this news is devastating for you, I'm happy to hear your daughter went so long without a recurrance, as my 23 year old son was diagnosed and treated with surgery, radiation and chemo for a grade III astrocytoma a year and a half ago. The doctors had originally thought it was only a low grade and he would only need surgery, but after the biopsy showed it to be faster growing, we had it extend his treatment to radiation and chemo.

We were frightened about the radiation and chemotherapy treatment as well, but he tolerated it very well. They do have technology which reduces the toxicity to healthy brain cells. It's called IMRT. They may also be doing a different kind of radiation treatment for her( Gamma knife), which they sometimes do if the tumor comes back in a location that makes it difficult to resect.

My son tolerated his radiation and chemotherapy treatments very well. He recovered quickly and is now running marathons and finishing his Masters degree.

We hope he stays in remission for a long time.

I hope that your daughter treatment goes well and that it puts her back into remission for sometime to come.

Where is she being seen? Is she at a major brain tumor center? Has she gotten a second opinion?

BTW- recommend reading some books on Gliomas, don't just rely on the internet for information. While much of it is accurate it isn't as detailed or extensive as many books on the topic. Also remember the fact that she is young (under 50) bodes well for her prognosis.

Please keep in touch. Arleen

annaplasticMan · Regular Joined: 09 Oct 2007 Posts: 12

im also very sorry to hear your news stay strong and try to be positive around her and it will help allot....don't listen to odds everyone is different i have a g3 anaplastic miliment brain tumor and im back working like im not supposed and thinking positive i think thinking positive helps allot im doin fine and i was given 5 years to live. Sometimes it can be hard to talk about with others for some to maybe tell her about this sight so she can talk to people goin through the same thing..my typing is very bad sorry

brainman · Posted: Tue Jul 22, 2008 4:08 pm Post subject: Re: Daughter's astrocytoma

Oh artaran, I am so sorry about the recurrence of your daughter's cancer. I thought I was a long term survivor but, wow, 20 years and still counting!!! That is truly awesome!!!. If you read my story (links in my signature block) you will find that your daughter and I share a lot in common. My original astrocytoma grade II (or mixed glioma actually) was diagnosed in 1992. I opted not to have surgery but to first try chemotherapy (CVP) and my cancer responded well to it. It recurred in 2005 at which time it was upgraded to a stage III. I did have surgery and radiation then.

I suspect that your daughter's cancer has also upgraded. Do you know what Grade it was back in 1988? It is probably at least one grade more aggressive now and radiation should be effective.

BTW, they also gave me a new prognosis... 7 year till a new recurrence. But if my original prognosis had been right, I would have died at least 5 years ago with less than 10% chance of surviving more the 10 years. Through other studied that included me and your daughter, those odds have almost totally reversed... more than 90% chance of surviving more than 10 years.

Here is my take on prognosis. I do like to know what my prognosis is but only in order to set priorities for those things that I still would like to do with whatever time I still have left. After that, I try to forget about my prognosis and just live one day at a time working toward those goals. I know... that is easier said than done. But, hey, your daughter has somehow done it before so why not this time?

You and your daughter are in my thoughts and prayers. Have your daughter join us.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

dariad · New User Joined: 13 Aug 2007 Posts: 7

I really appreciate the quick responses on our daughter's condition - the astrocytoma glioma. We're in Toronto and have one of the best cancer hopitals in the country here - Princess Margaret. I am - and more importantly SHE is - confident of the quality of care she'll receive there. I just wish I could talk with the neurologist and the oncologist. I did all the talking in 1988 and feel so totally out of it, this time. That's all it is. Lack of control and lack of any in-depth knowledge. When she told us about this reoccurrence, I had a flash back to those times and pretty much went into panic mode.

However, I am proud to say she is an AMAZING human being with an attitude that can't be beat! She will do what must be done and we'll all just soldier on. What else can you do, eh?

artaran · Posted: Tue Jul 22, 2008 8:24 pm Post subject: Re: Daughter's astrocytoma

You bet she's AMAZING and if she is anything like my son, she's been prepared for this possibility and is capable of making good decisions for herself. It's a very, very tough situation, but she's done so well already. You just got to trust her.

It brings tears to my eyes to think how wonderful it is she's done so well up to now. It's an awful disease, I can only hope my son will be so blessed.

I'm glad she is getting good care,

Arleen

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