my best friend has brain metastisis

[sandywc]

I was referred to this site from the beast cancer.org site. I posted there because my best friend, who was diagnosed with breast cancer 3 years ago, has the HER2 expression and has been on Herceptin since her first reoccurrence in the same breast immediately after her initial chemo and radiation. She has been doing very well this last year, no symptoms whatsoever. Then just this week she had headaches, nausea, and vomiting for 5 days. An MRI detected a 4 cm tumor at the base of her brain which the dr. says is malignant. She has no other spots they can detect at this time and will be having surgery tomorrow. I am encouraged by a few people who said they have survived many years post brain mets. If anyone has had this experience, I would sure appreciate hearing what treatments are available. I know there is a blood/brain barrier and believe they should have tested her before this since it is so big. Thanks for any help. I love her dearly. She's in Ill. and I'm in CA. I want to help and encourage,

Sandy

[Sheila]

Sandy
Where in Illinois...I also live in IL...where is she having her surgery. I am surprised that she never had a brain MRI...it seems some Dr's are just not up on getting the MRI's.

[sandywc]

Sheila - my friend lives in Fairfield Ill. That's pretty far south in Illinois, about 70 miles from St. Louis Mo. and south from Carbondale. I lived there too and we've known each other since we were kids. I later moved to Mt. Vernon Ill and then to California in 1980s. I'm not sure where Morris is,

[Joe]

Sandy,

I wish you had contacted us sooner, but she is scheduled for surgery tomorrow.
There were some non-invasive treatments available.

My wife Christine, was diagnosed with brain mets in 1999 and is doing quite well today. She has had no evidence of disease since 2001.

Our prayers are with your friend,

Warmest Regards
Joe

[sandywc]

Joe,

Thanks for your reply and the encouraging news about your wife, Christine. I've read about a Christine who helped start this site, is it her? I've been checking out this site most of the day since I learned about it from breastcancer.org. Unfortunately I just heard from Gail's husband yesterday about the brain tumor, and this morning they said she has no other cancer sites according to the tests. But I think her oncologist is late to the party once again. I think this is strike 3 for him as far as I'm concerned. I'm in California and she is doing what the doctor is ordering -- her husband is with her. I don't think the onc has done a single MRI on her since she had her reoccurrence and started herceptin over 2 years ago. Now the tumor is 4 cm and I doubt that happened overnight. I think that's over the limit for the radiation-type noninvasive surgery, from what I read. I thank you for your encouraging words. At least I'm armed with some information to share with her, and I can't wait to tell her about this web site,

Sandy

there is such a bugaboo about brain metastasis. i think that will change very soon as many women are diagnosed late when there have been longstanding mets. i know drs. don't want to discuss it because it scares women, no one wants to have brain mets, not even one. But 2 or 4 is easier to deal with than multiple. Insist on an mri.

[Joe]

Sandy,

There are two non-invasive treatments for tumors larger than 4cm. One is called fractionated radiotherapy and the other is Cyberknife. In both procedures, targeted radiation is given over a few months time.

Regards
Joe

[Sheila]

Sandy
Wondering how your friend made out...I am about 4 hours north, but know the area well...my son went to college at SIU in Carbondale, lived in Highland 3 years, and my daughter in law is from Breese...not too far from Carbondale. I think I have been to the mall in Fairfield when I went to Highland! Morris is about 70 miles SW of Chicago....I have also been to Mt Vernon many times...they have a great Harley shop there.

Anyway
hope your friend is doing well. Please let us know.

Joe,
Didn't Christine have a crainiotomy as well? I thought I'd read that before.

From all my research, it has seemed to me that the consenses on brain mets was: that if a large or single large met was removed surgically, followed by radiation to the area only, that combined procedure had the "best" outcome of all tx's. Have I understood that wrong?

pattyz

[Joe]

Patty,


Christine had Gamma knife twice and wbr.

Regards
Joe

[karenann]

Hi Sandy,

I was wondering how your friend is doing after her surgery? I am the one from breastcancer.org who told you about this site, so I was happy to see when I logged on today that you had found your way here. As I had mentioned before, this site is a wealth of informaton for Her2+++ breast cancer. I know when your friend is feeling better, it will fill here heart and soul with hope to read about all of the courageous women on this site who are living productive lives with stage IV bc.

I noticed in one of your posts that you said you live in California. I live in Walnut Creek, Ca. Are you in northern or southern Ca. ?

Please let us know how your friend is doing. She is in my thoughts and prayers.

Hugs,

Karen

.

[sandywc]

Thank you all so much for your comments. Gail should be in surgery now and I hope to find out more by tomorrow. I really appreciate your thoughts. I'm being optimistic and hope to introduce Gail to your website because I know it will help her with support and to support others, which she excels in. She's such a wonderful lady who thinks of others before herself and is actively downplaying this just so she won't worry me. Like it won't worry me! Take care, all. I'll hopefully be back with good news,

Sandy

[Esther]

Patty Z, from what I have learned from Dr. Black at Cedars-Sinai, the best possible treatment for smaller brain lesions and instances where there are 3-4 lesions, is some type of SRS, cyberknife, gamma knife, X-knife, etc, with no radiation at all.

Radiation is recommended if there are more lesions than what they feel they can successfuly treat with SRS, or it is a recurrence and they feel they need to kick it harder.

SRS alone has a very good long term success rate, and is considered much less invasive than traditional surgery. Dr. Black's policy is that the brain should only be touched if there are no other options available.

This is Dr. Black's opinion, and I'm sure there may be other viewpoints out there.

[Lolly]

Sandy, I just wanted to offer you and your friend more encouragement, by way of telling you of a friend of mine who is a survivor of brain mets(from lung cancer) for going on 6+ years now. She's an artist, a painter, and is very active physically. I hope your friends surgery goes well, please keep us posted.

<3 Lolly

[sandywc]

Lolly and all - thank you for your helpful and encouraging responses. She had her surgery yesterday for the 4 cm tumor at the base of her brain. It took seven hours, which freaked everyone out. The doctor said it took a long time because the tumor was really deep and he contually had to stop and control the bleeding. He had some discouraging things to say, the worst of which was that with the extensive surgery, she may not even wake up. I sweated it out all night. Early this morning her wonderful hubby (who is a total angel) called to tell me she was awake this morning, coherent, and complaining about the way they shaved her head. I was so relieved! So at least the first big hurdle has been successful. I will wait for more news, which I'm sure won't come immediately. Thanks to all of you for your help and encouragement. It's kept me sane.

Ester,
Oh yes, I do know that after having refused WBR these past 3 1/2 yrs, having had 16 brain mets treated with five seperate focalized treatments.

However, large lesions are STILL considered to be best handled by removal with focal rads to follow. Under the right conditions. Overall health etc. That is the general consenses of the brain experts. And up to date.

In my second 'recurrance', I had 14 brain mets at once. I still refused WBR and over the course of a year had these treated in smaller batches.

My first dx was just two lesions: 1.cm and 6mm.

My third recurrance is again, multiple. I've been at this a long time. Have had my 'limit' of focalized rads. They cross over and accumulate and mine have not been simply in one area of brain, but truly all over. Front to back, side to side.

I've been incredibly lucky and blessed.

[sandywc]

Just an update on my friend who had brain surgery last week. She continues to do well and has been released from the hospital. She hit the ground running and we've all had to hold her down! What a hero she is. The tumor was quite large (4 cm) and she was in surgery 7 hours. In spite of that, she has gone to a funeral, gone to church, and to her "stampin up" party. She will be followed up with radiation soon, and they didn't skip her Herceptin treatment. I've told her about this web site and how supportive it is, and hopefully she'll join when she feels up to it (and when she stops running around!). Thanks again for all the wonderful ladies out there (and Joe!) who sent information and encouraging comments.

Sandy in CA

[sherri]

Dear Sandy,

I'm so glad to hear the good news about your freind. I hope for full recovery. She is lucky to have a freind like you.
Love and hug,