Urgent! Brain Met, meeting radiation onc today!

[janeandrea]

Hi everyone. I posted this as urgent because of the time factor. Long story short, I just found out yesterday that my cancer has metastasized to my brain. This was my worst fear. I found out because I went to an ophthalmologist because I had weird blind spots. After his exam, an MRI was scheduled the next day (yesterday) and my onc called me just about an hour after the test. He scheduled me to meet with the radiation onc for this afternoon, then I meet with the reg onc afterward.

My body reacted poorly to the pelvic radiation - swelled up and I had to have an emergency ileo and couldn't complete that radiation one week shy of finishing. It didn't kill the tumor anyway.

What should I expect from BRAIN radiation? Will it change my personality? Will it hurt? Are there other options I should ask about? Given the fact that my lung mets had grown, and I new my time would be shortened, I planned a long trip home to Chicago to see my friends. I was supposed to leave in two weeks and now I don't know how this will effect that.

Anyone out there who can give my any info asap?

Thank you,
Jane

[vilca11]

Oh, Jane, this really sucks... Do not know much about brain mets, but wanted to tell you to PM Maia - her friend just finished brain radiation tx. May be PM will reach her faster.

Hang in, dear, so very sorry to hear about this development. Will be thinking of you. Hugs, Vilca

[singingholly]

I'm so sorry to hear this... I know nothing about brain mets or radiation. The only thing I know is that when possible sbrt is very effective and pretty sure. But I don't want to talk about things that I don't know...
You should ask Maia, maybe with a private message, she is surely informed.
A hug
Holly

[Sharona]

Jane, I am so sorry to hear this. I have two brain mets. The mets were discovered first. I had a craniotomy to remove the larger met, 4.5 cm, but it began to grow back two weeks later. I then had CyberKnife for both mets. I can highly recommend CyberKnife. It has been 17 months and I get an MRI every three months. The mets are either stable or show a slight shrinkage each time. The euro says he expects to see new mets or growth and when that happens he will repeat the CyberKnife. If you want to talk, pm me and I'll send my phone number.
Hugs,
Sharon

[janeandrea]

Sharon, what were the effects on you of the Cyberknife (I know this procedure by name only, not what it actually is)? Is it radiation?

I'm not sure where in my brain my met is, but I assume toward the frontal lobe, since it is impeding a pathway between my eyes and my brain. Given I have mets in both lungs and one in a kidney, I am not sure they would open me up for brain surgery.

How long is recovery from cyberknife?

[Maia]

Try to get Cyberknife, other kind SBRT or even better a regular surgery (craneotomy). After it , I'd accept radiation only to the place where you had the brain met ('tumour bed'). That could be SBRT or IMRT (intense modulated ratiotherapy). I wouldn't accept whole brain radiation.
I've read your posts in this board and I know you go for QOL so my advice would be: push, push your doctors for honest, complete answers to your questions. If you ask 'what's the next treatment?", they'll reply that. You have to ask 'how many time I have if I do this, what my QOL will be?' '"how much time if I do that?"

My friend had a brain met, removed by surgery, followed for IMRT after it (December 2012 January 2013) I'd say she had a good quality of life during one year; she was able to continue chemotherapy. Remarkably, it kept new mets at bay during one year! She had two new diagnosed this past January, bad location for Cyberknife and other surgery (I guess), didn't qualify for other great technology only avaiable in Toronto, Canada, and Zurich (MRI guided Focused Ultrasound Surgery). They offered her only whole brain radiation and she accepted.
I'll only repeat to you: do the difficult questions, hear carefully the answers. It has not to be the end of the road, right now.
PM if you need more info. I'll try to search something for you in the next hours.

[janeandrea]

Maia, thank you so much for the information. I am going to Google some of the things you mentioned. Yes, QOL is most important to me. Except for my family, almost all of my loved ones and friends live in Chicago; because previous to this, I had been told my time was more limited probably than I had previously thought, so I had planned the aforementioned long trip home. That is most important to me right now, so yes, hard questions and clear answers are called for. I need to know, for instance, if treatment would incapacitate me to the extent that I could not travel very soon to Chicago, what would happen if I delayed treatment to make a shorter visit home. I must see several people close to me before I get so sick I cannot travel.

How did your friend react to the whole brain radiation?

Off to Dr. Google for now.

Thanks so much!

[Sharona]

CyberKnife is radiation. The tumors are in my right occipital lobe. One is deep an inoperable. I had treatment on three consecutive days for about an hour. I was fitted with a mask, and felt very secure. There was no pain. I was asked to bring a CD of my favorite music which they played in the room. It was kind of a surreal experience. I was told to take a Zoloft one hour before. No side effects! I would definitely do it again.

[Sharona]

Forgot to mention, it was kind of like having a scan. No recovery time. I had the CyberKnife about two weeks after the surgery. The large tumor had caused my brain to shift and my family was told that if I didn't have the surgery I would be lucky to make it a few weeks. Also have mets in my lungs.

[Maia]

Cyberknife *is* radiation but so focused/ concentrated that it goes mainly to the target (think of 0.5 / 1 mm). The beams (radiation) are thick as a needle so they do damage the healthy tissue they go through, to get to target. Still, it quite little invasive.
There are usually no many side effects, maybe some fatigue the days after treatment. Of course, not every person is the same and I heard about people who had really bad time with Cyberknife.
There is a particular kind of equipment, *only* for brain treatment, that is called GammaKnife. The technology is the same, it's usually considered that Gamma is better for brain (Cyberknife can treat brain, lung, bones, etc.).
If you're planning to go on a trip, this probably could buy you that time, with good QOL.

Gamma Knife for Non-Invasive Brain Surgery https://www.youtube.com/watch?v=axAUpxF2Ylo
CyberKnife Treatments for Brain Tumors https://www.youtube.com/watch?v=gDgJQEoH4tI

You can watch related videos on YouTube.
Are you in Chandler, AZ ?

[janeandrea]

Thanks everyone, for all of your help so quickly!

Maia, I will check out those links you sent to me, and Sharon, thanks for the PM. MD Anderson (where my onc is) just called and my onc apparently has been talking to a different radiation onc who has more experience with my "situation" (whatever that means), so he wants me to meet with this guy instead, tomorrow. While I am not thrilled with waiting another day (I'm quite anxious), I'm more than happy to meet with the best doc for my situation.

Maia, yes, I am in Chandler, AZ.

What I didn't tell you guys is that on the way home from getting the MRI yesterday, I got into a 3 car accident on the highway. Not my fault (rear-ended by a guy who was himself rear-ended), and I am not hurt. I actually got the call from my onc about the brain met while I was still sitting on the side of the highway after the accident!. Anyway, with that long day yesterday and everything I am so emotionally wiped out that I am going to take a break from research for awhile today.

Thanks,
Jane

[Maia]

Here you can read what I posted when my friend was diagnosed first time with the brain met: viewtopic.php?f=1&t=38714

You'll see in both pages that I posted links to articles and about some radiosensitizer one can take during treatment. The first article says that most radio oncology groups believe that patients with limited brain metastases are often more likely to die from the systemic disease than from the brain tumour(s).
In these cases, there is not a size to fit all --doctors need to evaluate status of the systematic disease (rest of the body), overall performance of the patient, etc.
Back then, I find a lot of useful information in this thread, that our dear Laurettas started when his husband had to face a brain met. My friend's case was different -she had not so much tumor burden back then, she was both, Folfiri and Folfox naive at that time (yes, after being a CC patient since 2006). I feel that reading both threads you may realize that you have to gather all the information that you can and consider your particular case.
janeandrea... I'm giving you the biggest hug!! I wish you take deep breaths and find a path that feels right for you, and allows you to do this planned trip, with good quality of life. How great that you ARE living life, right these days!

[Maia]

Oh, just saw your post after I did mine. So sorry about the accident, and what a stressful day!
Jane, if you're treated at the MD Anderson, I'd say just stop all the searching, relax, and wait until tomorrow (maybe watch the videos I posted, you'll feel reassured). One day won't do a difference, with your symptoms and you'll be in the better hands at the MD Anderson. I'm so glad for you, that you're treated there. I think they have even other technology there -laser ablation.
Life is so unpredictable, yes... I do know.
Other big hug.

[weisssoccermom]

Jane,
My friend's mom had primary lung cancer that metastasized to her brain. She had gamma knife treatments (I believe 3-4...maybe 5 at the most) and it killed her met quite quickly and effectively. This woman was in her 80's when she had this done and the onc told her that if another met popped up (which, he assumed it would) they would just zap it. Her mom did just fine....no weird changes, no personality problems, no fatigue, etc.

I have another friend, however, whose mom had total brain radiation for brain tumors and this treatment was debilitating. She suffered from extreme fatigue, personality changes, etc. but like the first mom, she was also in her 80's.

Cyberknife is used for brain and other lesions and is less accurate than gammaknife. That's not to say that it isn't a good option but, for brain lesions, gamma knife is the GOLD STANDARD. If they have that option available to you and if your insurance company approves, go for the GK.

[janeandrea]

Hi everyone - sorry for the delay in responding to all of your wonderfully supportive and informative posts. Been a busy and emotional few days.

Sharon, turns out my tumor is also in the right occipital lobe - have you had any vision changes? I have some, which is what drove me to an ophthalmologist in the first place. Thank GOD I didn't blow off these symptoms and we seem to have caught this pretty early.

So the plan is that I am having stereotactic radiation surgery (SRS), which I guess is like the blanket name for the kind of thing Cyber Knife and Gamma Knife are. From what I understand, the latter two terms are names of the type of machine used and process of "zapping" lesions. This is basically similar/same as Cyber Knife but different brand of machine? Anyway, the rad onc is extremely experienced, is head of the department here at Banner MDA, and is about to go on some teaching trip where he is doing some high level teaching (sorry, so much info in my brain that the less important stuff is in the back of the recall line). So I am comfortable with him.

I will get a call, probably Monday, scheduling me for an MRI and a CT for mapping, then after a few days for the radiation team to plan it all out, I will have 1 zapping session each day for 3 consecutive days. And that's it. They will follow up with MRI and/or CT at some point shortly thereafter to see the effect. They suggest I delay my trip about 2 weeks, which is ok with me, to give them more time to keep an eye on me and ween me off the steroids I started to address any swelling of the brain.

I am still freaked out that I have a tumor in my brain, but I am feeling a bit calmer, as I said.

I'd still love to hear from any of you brain mets folks about experiences afterward, etc., just to get an idea of what's may be what, and to know I'm not alone (which of course I know).

Peace,
Jane