Mets to Brain
 

Hi everyone!
I've recently gotten diagnosed with mets to my brain...my oncologist is referring me to a radiologist and I should get a phone call any day. Apparently there are "many" mets. I've been reading up on as much as I can via the internet and by the sounds of it I'll probably be going through the full brain radiation therapy. Just wanting to know if anyone out there has been through this themselves? Any advice/information to share? I'm extremely worried, obviously - I'm normally a very positive person and with my original cancer diagnosis this is how I was...but this is terrifying me. Any advice would be appreciated, and thanks so much!

Re: Mets to Brain
 

Patrice, sorry you have to go thru this. I had wbr in March. The hair loss didnt bother me so much but I also had fatigue and lack of appetite. But I endured it. Am really hoping I dont have to do it again. Best of luck.

Re: Mets to Brain
 

Patrice I have no personal experience of this but wanted to wish you well, there are quite a few members here who have overcome brain mets including Christine who's still NED years later so please take some encouragement from that and good luck!

Re: Mets to Brain
 

Patrice. It is so scary, isn't it!!! I was diagnosed with a single small lesion 10/28/11. I just had surgery to remove it. The future plan is not set yet. I am on herceptin and working on tykerb for the HER2 status. I will also get another round of chemo based on the breast recurrence of 9/2011. I have been advised to have whole brain radiation to "sterilize" the brain, but am seeking some second opinions about that. PM me if you wanna talk. I know how difficult this is in life and scary, but I've found some really positive information out there!!!!

Re: Mets to Brain
 

Thank you for your replies! I'll keep you posted when I find out more with my consultation next week...

Re: Mets to Brain
 

Dear Patrice,

I just wanted to give you a ((((cyber hug)))))). I hope the consultation goes very well and the treatment is highly successful.

I am praying for ya and rooting for ya.

Paula

Re: Mets to Brain
 

Patrice, i was diagnosed with 3 brain met's in April 2011 after having a seizure. I had surgery to remove the 2 that were in the back of my brain because they were connected together and then I had WBR to shrink the one in the front of my brain.. So far so good on that but was diagnosed in September with a tumor in the chest wall and possibly a lesion on my Lung.. Had a catscan about 3 weeks ago and showed that the tumor in my chest wall is stable and the one on the lung is gone, and they didn't see anything in the brain but I will get a pet scan in December and a brain MRI in January and I know how you worry because I worry everyday about it coming back in my brain..I will pray for you and never give up hope..Hug's Jeana

Re: Mets to Brain
 

Just made my decision that I will do WBRT in december. Had my cranio-surgery 11/17/11. Just feel like I need to do everything medically possible to prevent any future recurrence or I will regret my decisions. I'm scared and feeling a little sorry for myself right now, but I know that it was the right decision for me.

Re: Mets to Brain
 

I had one brain met removed by surgery which was then followed by 5 rounds of targeted radiation to the tumor bed (IMRT, or image modulated radiation therapy).

WBR is the standard of care. However, and that's a big however, many survivors who develop several brain mets have had individual lesions zapped with targeted radiation. In some cases up to 8 or 9 individual tumors over time. And they continue to do this if a new one pops up. In your case, how many is "many."

Did you get a second opinion? From a major cancer center/hospital? Often smaller facilities do not have equipment sophisticated enough to offer targeted treatment. WBR has long been the stardard, but that has been changing as technology has been improving. Did the rads onc mention targeted radiation?

Hopefully some of the women on this board who have had multiple brain mets will give you more specific information about their experiences with targeted radiation.

Joan

Re: Mets to Brain
 

Patrice and Survivor,
No wisdom to share...but lots of prayers and good wishes!

You may not think so, but you both seem extraordinarily brave to me!

God bless both of you! I'm inspired by your courage in staring down the beast. Please keep us posted.
Denise

Re: Mets to Brain
 

[B]Joan[B], Thank you for the concern. My primary oncologist are at a community center which does not have targeted imaging. They are Texas Oncology, which is part of the MD Anderson network, so they follow all the MD Anderson info. I went to my second opinion at a research/teaching hospital that is NCI accredited to get a different perspective. They did give the option of targeted therapy, as well as WBRT and watchful waiting.

I had actually already made the decision to do the WBRT when I read my molecular study report on my tumor. It talks about the specific biomarkers for my tumor and what drugs will work the best. Some take-home points for me were that my tumor markers indicate early recurrence and shorter disease-free survival.

While I don't believe that that will affect how long I'm gonna live (that's only up to God, same as it was before I had BC), it does make me want to be as aggressive as possible with both medical treatment and my "way of living, or terrain" to help make sure that recurrence risk is as low as possible and that I won't regret NOT doing something earlier.

It helps me to see that you have not had a brain recurrence in 3 years: Congrats!

Re: Mets to Brain
 

Hi there! Thank you to all for your comments - they are appreciated! It appears I am to start radiation soon - whole brain radiation, and ten days of it. They said I do have over a dozen mets to the brain, but they are all very small which gives me some hope. Thank you again for your comments - very appreciated!

Re: Mets to Brain
 

Good luck with the WBR Patrice - zap zap to those brain mets!!

all the best
caya

Re: Mets to Brain
 

You hang in there, Patrice! I am pulling for you to breeze through WBR and obliterate those nasty mets!!!!

Re: Mets to Brain
 

Hi i've had mets to the brain.10 in total then i had wbr 21 shots with vmat radiation i had some shrink and one go and then six weeks later they grew back with two new ones. I've been on tykerb and xeloda for 3 months i just had a mri and now i have the three mets the largest is 17mm, 8mm,6,mm huge huge huge improvement and no new ones and very little edema. There is always hope and i believe i will get rid of mine.

The wbr does break down the blood brain barrier which helps the drug do there job.

Stay strong.

Jacqui

Re: Mets to Brain
 

Thanks again everyone! And Kiwigirl (Jacqui), wow have you given me hope! You are doing wonderful! I think I will be on Tykerb as well, but he hasn't mentioned anything about Xoleda but I'm seeing that the two go hand in hand with many people. So it sounds like the rest of your mets are disappearing just by Tykerb alone! This is wonderful news, and I wish you the absolute best - please keep me updated!

Re: Mets to Brain
 

Jacqui, thanks for the positive post, it gives me hope. Best wishes, and to Patrice also.