OT- Know any brain tumor survivors?

[geochick]

My sister had a seizure today and after rushing to the ER, a brain tumor was found. She gets to have surgery sometime this week. Since only a cat scan was done, we don't know too many details (MRI tomorrow). The tumor is over an inch in diameter and is near her speech center. I'm just looking for really *positive* experiences any of you can share. It would really help right now. I have her little boy with me tonight because the surgery could be as early as tomorrow morning. Her ds is really scared (he's 10). Hug your kids every day! Thanks.

[buddyleebaby]

Yes!
My Aunt (mom of three) went through this last May. She had emergency surgery to remove the tumor followed by a couple of months of precautionary chemo.
Today she is happy and healthy with no sign of cancer.

Hugs to you and your nephew, and a prayer for your sister.

[Marisa6826]

Yup. Jonathan's former work partner had a very large tumor and had it removed, followed by chemo. She's now beyond her five year mark and is considered cured.

The only side effect she's encountered is that her balance/depth perception is a little bit off. She's an illustrator by trade and in fact, recently had her first cartoon published in the New Yorker!

The good news is that they caught your Sister's tumor reasonably early. If they didn't think they could get it, they wouldn't be jumping so quickly. Are you happy with the hospital/doctors/surgeons where your Sister is now?

My prayers are with you and your family. Please (!!) keep us posted!

hugs

-m

[Globetrotter]

Do they even know if it was malignant? I know a few people who have had benign tumors, and they are all fine now. In fact, one of them hasn't had hers removed (just monitored closely). Even if it's malignant, it's good that it was operable. (((((HUGS)))))

Kris

[shilo]

i know TWO!

my dad's first cousin had a tumor the size of a golf ball removed from her frontal lobe about 10-11 years ago now. it was found to be precancerous but not malignant once they removed it and it went for pathology. she noticed very mild short term memory/recall issues after surgery but is otherwise perfectly healthy. and now she gets to use "well i had a brain tumor, what's your excuse" when her kids do something collasally stupid :).

my husbands uncle has had a recurring, slow growing, benign tumor that sits up behind his eye under his pituitary gland. they've gone in on three separate occasions in the last 20something years and remove as much as they can safely without damaging his vision. after a few months recovery each time, he's had 5-10years symptom free with no side affects until it starts to get big enough again that they go in and repeat the procedure.

hugs to your whole family.
lori
Sam 5/19/05 How lucky I am that you chose me.

[spencersmommy]

YES!! I know 3! 2 are children and 1 is an adult. ALL got bad diagnosis at first...so definitely get second and third opinions...one mom was told her 3 year old had 18 months left...now she is a happy Tumor free pre-schooler (her tumor was cancerous,too). The other 2 were not cancerous, though the adult had a scary diagnosis. He is fine and playing soccer again. I don't know where you live, but they all went though some hospitals in SF.
Hang in there....hug to you and your family. I will add your family to my prayers.

[squimp]

My mother had a large brain tumor removed about 6 years ago, and she is doing amazingly well. The tumor was really affecting her, and so she truly has a new lease on life. It was not malignant, and her doctor had done hundreds of these surgeries before. She was very lucky on both of these counts. I hope things go well for you and your family at this difficult time. I also suggest staying away from googling the internet for a little while, at least until you know what type of tumor it is.

[dylansnan]

My Aunt had two in-operable (sp?) but benign tumors. They were found two years ago. She had multiple rounds of radiation therapy to shrink them. She is healthy now- but does have some reoccuring effects from the radiation.

I don't know exact details, but an aquantence was diagnosed with brain cancer a few years ago. He had surgery & Chemo. He is completely recovered now.

***Lots of positive thoughts heading your way***

[klwa]

Yep! The daughter of a man I work with was diagnosed with a brain tumor at about 12. She's had to have surgery twice, but she's doing great, and is about to graduate high school this year.
-Kris

[JBaxter]

YES :) DH's best friend in high school ( who is the minister that married us) wife had a tumor as a child. After they had their 2 children it re- occured and she beat it. Several years later she also survived breast cancer ( in her early/mid 30's). As of last report she is doing well. I think she is at a 2yr point now ( w/ the breast cancer).

[newnana]

Yep. I was born with one that they didn't find until I was 2. My brother and I were fighting and I bumped my head in just the right spot. After a few weeks the bump was growing instead of receding and my mom had it checked out. It's a good thing I hit my head because it was growing farther into my brain and the good whack gave it a space to go out. It was benign, but that wouldn't have mattered had it kept growing, KWIM?

Obviously every tumor is different, and the brain is a scary place. But like PP's have said, lots and lots of people with brain tumors turn out okay. In my experience, so much depends on your neurosurgeon. Get a great one. With tons of experience in your sister's exact tumor type and especially location. There are so many great new procedures out there.

This is coming hard and fast, I know. But it's so much better that it was caught early.

Oh, and now I'm in my 30's, have a sweet DD of my own, and have never had a recurrance.

We're thinking of you and your family.
Michelle

[table4three]

A good friend of mine was diagnosed 6 years ago. After surgery and chemo, she's still going strong! It all depends on the type of tumor.

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[Moneypenny]

Yes, a high school friend of mine. She had surgery, they found it was malignant, so she went through chemo. That was in 1988 and she's doing just great today - no effects at all!

Big hugs and good thoughts coming out to your family.

Susan
mama to my cutie pie, Avery
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[lilycat88]

I am going through this right now with my sister-in-law. She just had a 4cmx5cm tumor removed. It was a "left insular" tumor that a major university medical center in Tennessee deemed inoperable. Left insular means it was in the dominant hemisphere and "inside" the brain. It was in her speech/language center as well. She had 2 surgeries, one on March 1st (10.5 hours)and one on March 13th (6 hours) and is doing really great. She came home on Monday. There is too much to go into here. I was actually just getting ready to post an update on our situation and probably will do it later. Do NOT let her rush into surgery. I don't know where you are but email me at lilycat88 at hotmail.com and I can share what information I have and things to consider. As far as good news goes...presentation of a tumor by seizure is often considered a good thing :-)

[Fairy]

I just wanted to send you my best thoughts and prayers.

[Puddy73]

Yes! A good friend of mine from law school had a golf-ball sized tumor removed and is now perfectly fine! The headaches and sinus problems that bothered him for years are gone, so he is better than ever.

Big hugs and positive vibes going out to you and your family.

Jennifer
Mommy to Annabelle 9/08/03 & Finn 10/31/05

"If we couldn't laugh, we would all go insane." - Jimmy Buffett

[megs4413]

my best friend....she had a tumor in the left side of her brain her senior year of high school....she's been cancer free for 6 years now.

[KBecks]

My older brother had a benign tumor removed successfully in December, it was near his speech area also. I will pray for your sister.

Hugs,

[Laurel]

My dad has a fairly large tumor (size of a lemon, malignant) on his left parietal (sp) lobe.

He was diagnosed in Oct. 2001. He is still fully functioning. He has seen his kids graduate from HS, college, and graduate school, get married, have kids, and he has traveled the world...all things we thouht we may not get to share with him. Several doctors have said they think the tumor could have been there 30 years or longer before they caught it! The best current prognosis we have is at least 10 more years, which will put him in his 70's. But we also know things could change at any time. It is a hard state to live in day-to-day.

This can be a confusing, difficult, road to go down. Please PM at any point if you would like to. I'm not sure where you live, but my biggest advice would be to talk to as many doctors as you possibly can and work hard to make sure she is getting the best, most advanced care available.

I'll be thinking of you!

[JTsMom]

Just wanted to send some support your way. I'll be thinking of you all.

[maestramommy]

My aunt had a brain tumor removed some years ago, and she is perfectly fine, still working (in research!) and raising her 4 kids. The only thing I've noticed is that the corner of her mouth is a little pulled to one side and it doesn't move when she talks. Otherwise all her other motor function appear normal.

[alleyoop]

I know two women that had brain tumors. One was in her late 50s, presented with seizures. She had it removed, it was benign and you would never know. The second is in her 30s, presented with bad headaches. She had hers removed (but a much more difficult surgery because it was more web-like and somehow wrapped around the internal structures of her ear) in December and is doing great! It amazed even the doctors that the tumor was NOT cancer.

Hugs to you and your sister!

[tarabenet]

Didn't read the other replies. But yes, actually I just posted about this over at The Purple Project! We have a dear friend who beat a very agressive tumor. A yearlater, it reappeared. He went through experimental treatment, and beat the sucker again! Cancer-free for three years now!

Staying positive was the lesson I learned from him. He was just amazing. It never seemed to occur to him at all that h wasn't going to be just fine. And he was right.

I can't imagine how scary it must be to face what you and she are facing. But people do it, and they win. And I can't imagine that your sister could possibly have a lesser outcome. With you and y'all's families, she will come through this.

I also had a coworker a few years ago who I was shocked to find out had been through a scary-big brain tumor several years before I knew her. It left no physical signs on her whatsoever. And that was when medicine was no where close to what it is today!

Thoughts/prayers for strength and courage, in addition to a cure, all headed for your family.

[VClute]

PLENTY! I used to work on a neurosurgery ward, and almost all of the tumors there were benign, operable, and absolutely recoverable. Otherwise, those patients would not have been at our local hospital, but at some big teaching facility.

Amy in NC
mom to Dixon, born 2/14/05
...and let the shopping begin!

A GIRL (!!) Due 3/30/07

[cindys]

Yes, I was diagnosed with a brain tumor in Oct 2003, right at my 1 yr wedding anniversary. I was diagnosed after complaining of severe headaches, I had surgery 2 weeks later to have the tumor removed. Thankfully, the tumor was benign. I have an MRI every year and so far everything looks great.

Say lots of prayers and offer tons of support.

Cindy
Mama to Zach(16) and Zane(1)

[geochick]

Thank you all for responding. After a very long day in the hospital, we finally have a few answers. The tumor is sitting directly on top of her speech center. It looks like a slow-growing tumor, so the docs aren't concerned that it needs to come out right away. They are going to do a "functional MRI" next to find out exactly where my sister's speech center is, and to see if the tumor is right on it. Today's MRI showed that the tumor is growing down into her brain, so if they go digging for it, they don't want to dig into a really important area. After the functional MRI, probably a few months from now, she'll have conscious brain surgery to remove the tumor as best as possible while making sure she can talk through the surgery. She has anxiety anyway, so I can't even imagine how that surgery will go. So, they don't think it's cancer, no chemotherapy is required, and we are all relieved. She's in the hospital tonight getting stabilized on some anti-seizure meds, but she should be able to go home tomorrow until the next MRI appointment. I guess I can't complain. If my one and only sibling has a brain tumor, I guess it's not the worst case scenario. She's most concerned that she won't be able to drive for a while until the risk of seizures goes away. I can understand that concern, but I'll help her as much as I can.

Anyway, thanks again for reading and for your input.

[lilycat88]

My SILs surgeries were "awake craniotomies" as well. Total time for the first one was 10.5 hours and she was awake for 5 hours. Do consider sending her MRI (and pathology results if they do a biopsy)for review by another surgeon at another brain tumor center. Duke University...UC San Francisco...MD Anderson...all will do record reviews that don't require a visit to their facility. SILs was diagnosed in November and she didn't have surgery for several months. The surgery itself is not painful and my SIL only remembers about 90 minutes. The most important thing I can tell you is for her to not panic and start any treatment until you all are very clear on all options and implications of treatment. Aren't they considering doing a biopsy prior to a craniotomy? MRIs don't tell the whole story and even biopsies have a 5-10% error rate according to her neurosurgeon. She must be at a fairly large medical center if they have functional MRI capability but the sequence of events is different for your sister. SILs functional MRI wasn't done until a week or so before surgery to help with surgical planning.