Brain Mets - Can we pull the threads together?

[mamacze]

Thank God for Joe, Christine and others who are keeping us up to speed on the need for a regular MRI for brain mets. Joe, can we pull the brain mets and brain MRI threads together? I am wondering what if anything is the scanning protocol for us Her 2 +++ ladies who have been on Herceptin for awhile. How often should we get Brain scans; when should they start? Also, I wish all of you sweet angels out there who have brain mets would share with the rest of us just what were your symptoms... Would you be kind enough to share them with the rest of us?
Love,
Kim From CT

Kim......... the 'symptoms' of brain mets can be so varied, to NONE. It depends on size, location and any edema involved.

In my case I've had: 1st dx visual half moon shaped light show of peripheral vision of only one eye...which came and went over a period of a month or so. A little bit of increased dizziness. This was from a 1.5cm tumor and a small 6mm. The small one was behind my eye.

2nd dx of 14 small lesions: NO symptoms at all. And this was over the course of 15 MONTHS, biding my time getting them all addressed/treated with focalized rads.

3rd dx: again no symptoms at first. But with increased size and location in cerebellum and brainstem/pons, 24/7 severe dizziness overnight.

This has not been talked about before but I think it needs to be addressed: There is a pretty good percent of people dx'd with cancer who, at autopsy, are seen to have brain mets, yet were never dx'd with them while alive. In other words, you can have them and they don't bother you, nor do they 'kill' you before death from other causes or progression elsewhere in the body.

It's yet another coin toss with cancer. Unfortunately or whatever, since Herceptin came on the scene helping those of us Her2+++ live longer, the brain continues to be a bit of a hideout for progression of our cancers. I'm still NED in body nearly three yrs out from my doses of Navelbine/Herceptin.

To those who will worry anyway, reporting 'symptoms' can easily get you a brain MRi with contrast. Not Ct scan.

hugs,
pattyz

[StephN]

Good to see you posting.
Do you have any news or still waiting for the next round of scans/checkups??
Hopefully you have some improvement in the dizziness, etc. since you feel like sitting at the puter and looking at this board!

I have my next followup brain MRI next week.
Take care now.

[mamacze]

Oh PattyZ,
This has been so helpful to me, you are very clear talking about your symptoms or lack thereof. There clearly is no set type of symptom; nor is it clear to me if brain mets could progress before a reoccurance of lung mets. I wonder if brain mets grows quickly or slowly. It seems like more and more of us herceptin girls are getting brain mets. You say you are NED in body 3 years out from your doses of Navelbine/Herceptin...was that your first line of treatment? Does "NED in body" mean that within those 3 years you do not count your brain mets?
You are incredible, thank you for sharing so much. I am curious to know how mets to the brain unfolds; I am beginning to see it does not unfold "typically"...
Love Kim from CT

Steph........ you are so sweet, you know! I am on my second rnd of Xeloda/Temodar..near the end of it actually. And am still taking Meclizine for the dizziness...but at half dosage. I am fairly free of dizziness at present, which is such a huge relief! Actually got out and did a small amount of pruning without much incidence!! This really made my day )

MRi on the 29th early, then onc appt in afternoon to 'see' results...... Then leaving for nine days Oct.3-11 for a little trip to a favorite place. I think your MRi is around the same time??? We'll hope for good results for both and keep 'in touch'...
love, xoxooxpatty

Kim... I'm glad I could be of some small help. I can't tell you how much research I've done over the past three years!!!

The growth rate of brain mets is variable as well.... just as in all other types of mets.

The Navelbine/Herceptin was my first and only line of treatment for my mediastinal mets, spot on lung and spot on pelvis.

And yes, I mean NED in body only and do not count my brain mets in that NED state.

Also fyi: my first dx was 12/99 Stage IIIb, Inflammatory and Invasive with two tumors, 6 of 26 nodes positive. Dx of mets 7/'02 two and a half yrs post original dx.

hugs,
pattyz

[Celina]

Patty, I was thinking about you yesterday...wondering how this combo is working for you. I mentioned it to my sister and she asked if you have had any results...please let me know.
Glad to hear the dizziness is better and have a blast "in your favourite place"
Celina

[ewaters]

Hi, this is my first time on the site. By way of background, I was 5 1/2 years out when mets showed up May 05. Had a bad cough and leg pain. Cat and Bone scan showed mets to lungs, liver and bone. Doc ordered a brain scan and 3 very small spots found. i am on weekly chemo of Taxol, Carboplatin and Herceptin with Zometa once a month. i have scans every 8 weeks. Everything has shrunk dramatically. the problem is that although the brain mets have also shrunk (surprisingly, to the doctors), a new 2mm spot has shown up as well as some questionable spots (per a second opinion). Now i have doctors split on whether i need whole brain radiation or stereotactic radiation. I have been pretty frightened of any radiation to the brain but seem to be realizing I will have to have some. The doctors seem to differ regarding the likelihood and severity of cognitive loss with whole brain radiation. Can someone out there give me feedback about the side effects of both types of radiation? Severity, longevity, etc. I am 43 years old and not having any other health problems. I have no physical symptoms from the mets. Thanks. Beth

Celina, I'll post results in a new thread next week. Ofcourse, am hoping to post with VERY good results...

hugs, xoxoxopatty

Beth! That is fantastic news actually, about your chemo working. Brain mets pretty much suck as for treatments and response.

I can speak of focalized rads, having had five treatments over the course of 18 months to treat a total of 16 brain mets. I just refused whole brain radiation along the way.

Three of my tx's were Linnear Accelerator, similar to Gamma Knife, but a different machine. Both use the 'screwed on' headframe. With enough pre-meds (emphases on ENOUGH) having it placed on head is not too terrible. As well as more meds during the day if it will be long. The tx's themselves are painless, unless the pins on the back side of your head are giving you pain.

Getting the frame off is a trip, as backing the pins out make it tighter on the opposite side. Bad headache will last 1? or 2 hrs no matter what. But then it's gone. My hair thinned in the areas treated.

Had two CyberKnife tx' which I preferred as there is no headframe but a form fitted( drys hard) plastic mesh facemask. Back of head can start to hurt if you are on table more than 1/2 hr to 45mins. I was. So, I took two Ativan the 2nd time and slept through most of it.

This time with the CK, I went totally bald in two small areas in the back of my head where radiated. They have grown back in fully.

Other side effects..... I had a bit of a headache and what felt like pressure for about a week. That's it.

That all said, now with progression of brain mets, having any kind of radiation brings MUCH higher risk of damage to brain. I have been turned down for any more focalized tx's. Since at this point WBR is even MORE risky, am hoping my chemo cocktail of Xeloda/Temodar will show some response. Tumors in Cerebellum and on brainstem/pons are problematic.

When Mri showed 14 new lesions, all small...as I said above, I waited 15 months to have them all treated. I had no symptoms and they grew that slowly. So, if you chose to, I expect you could do the same thing. Wait until next scan and then decide which way to go. Wait again, or have treatment of your choosing.

Or, best case scenario..... a different chemo could address your current small one and any more down the road!!! That really is fantastic you know.....
sending you big hugs,
xoxoxpattyz

[StephN]

Kim, and all -
My brain mets were growing without ANY symptoms. This is because they were in my cerebellum or lower brain. There was one clue - my CEA tumor marker was slowly rising. The large met behind my left ear was one inch in diameter when I had my scan. A smaller one was about a quarter inch. I had Gamma Knife and did notice a little effect to my thinking. Since I was on the Decadron which is very strong, I thought that could have been the cause. The length of time to blast the large tumor was about 55 miinutes and this also caused me to lose some hair and it kept thinning for several weeks. Otherwise, the whole procedure was painless to actual tumor sites.

Best wishes to you all with or without brain mets. I feel optimistic about my mets being "goners."

[mamacze]

Hi Girls!
Oh, Beth, WELCOME to our discussion boards; I am a stupid when it comes to brain mets, but as you can see; we have some wonderful sisters who have been to the moon and back with experience (lilke Patty and Steph) and we all benefit from their experience. Patty, I am so glad to hear your dizziness is starting to disappear; I look at it as another chance to slip into a few minutes of denial and enjoy every minute of your special spot, your family, the grass in your back yard. And Steph, NO sysmptoms is a bit scary; I can see why Christine says we all should have a baseline and regular brain MRI's. I wonder what the clinical indications are to doing focalized rads vs whole brain and what are the indications to stop treating? You are all heros in my book; thank you for sharing your experiences so candidly.
Love Kim from CT

[al from Canada]

Chemo angels,

I hope I don't throw people into a spin here but; recently someone posted about doctors who get cancer and they (the doctors) wouldn't consider starting a treatment plan without a second.....and often a third opinion.
My question is as follows, and I ask the question because I am brain mets nieve;
1. what is the margin of error in an MRI?,
2. are patients getting a second scan, and / or opinion?

The reason I ask this is because with brain mets; we are considering nuclear treatment and many of us have gotten second opinions for much less. I am by no means trying to mitigate the seriousness of CNS or brain mets....I just want these answers in case it ever happens to Linda.

The problem is that I don't listen to what I don't believe,
Al

Kim, you asked:
<<<I wonder what the clinical indications are to doing focalized rads vs whole brain and what are the indications to stop treating?>>>

There are some cases of single brain mets and cases of several with recurrance of a few more. So, IMO only, it makes sense to go straight to focalized rads (mayber with regular surgery if possible), skipping WBR.

The 'gold standard' is surgery where possible plus WBR. But more oncs are going to focalized rads to 'clean up' area. Where surgery is not possilble, WBR is still the norm first recommeded.

There have been many many studies done using combinations of these tx's. The least successful of all tx's is WBR alone. Doesn't mean it has no successes though.

Clinically, if any brain met is larger than 3cm, focalized rads are not possible. So, surgery if accessable plus WBR. Or WBR alone.

Clinically, if mets are very symptomatic, a high dose of Decadron is started immediately. Followed by one or another type tx dependant on size of mets as I said.

Indications to stop treatment: Where all 'regular' treatments have been tried and failed, sometimes a second course of lower dose WBR is done. Or, if/where available some could go into a trial. Or, in my own case, I'm trying a chemo combination. Treatment stops when there is permanent disabling brain damage or severe progression of other mets indicate death is near or likely soon.

There are more gals who die from progression of their other mets first than from their brain mets progression alone. There is not alot of good info on people like me with brain mets alone...
That is changing though with the advent of Herceptin.

whew!! hope I didn't give you more info than you wanted, lol!!
hugs,
patty

Al, the one thing that IS accepted is the superiority of MRi w/contrast for brain mets. Prior to rad tx, atleast for focalized rads in my experience, a higher definition MRi with triple contrast is done. It often shows even more mets than previous 'standard' MRi.

Also, only in my experience, different oncs/ centers/ hospitals are consulted and view the films.

The question does remain whether or not the films show mets/ or mets from bc primary or ?? If there are accompaning symptoms, that can help with dx. Those questions can be addressed in different ways, for sure. Eventually, going with the best opinion in your own mind/gut.

It has also recently been discussed about just how critical it is to treat what is seen on films. Observation alone? Maybe that is the way to go initially if there are no symptoms and lesions appear small.

There is another MRi, MRS? Specto something that can show active as opposed to dead or inactive tumor.

There are small studies going on with different rad sensitizers, chemo with or without rads, chemo combinations with Temodar, a few other different delivery systems. It's just that the progress is so damned slow... and approval is even slower.......

Hope you guys never find the need for this headache (pun intended) information!
hugs,
patty

1. what is the margin of error in an MRI?,
2. are patients getting a second scan, and / or opinion?

The reason I ask this is because with brain mets; we are considering nuclear treatment and many of us have gotten second opinions for much less. I am by no means trying to mitigate the seriousness of CNS or brain mets....I just want these answers in case it ever happens to Linda

[chartermom02]

Hi all,

I read regularly but haven't posted in a while. This is on topic but kind of also off topic.....I'll be 5 years out in early October. Diagnosed with IDC 2cm; Stage I; ER+/PR+; Her 2+++; Grade 3. I was 41 at the time and premenopausal. Had A/C x4; 35 rads; Tamoxifen for 3 years and 10 months and now on Arimidex for the last 10 months or so after undergoing a hysterectomy. My question is about how fiercly I should push for a brain MRI. I have not had one ever and my onc is very apprehensive about ordering any testing unless there are symptoms. Even at the time of diagnosis, I wasn't given any testing - no tumor markers, no CTS, no bone scans, etc. I'm due for my follow up mammo, ultrasound, and for the first time an MRI of the breast in a few weeks and then have my checkup with the onc near the end of October; I really want a brain MRI just in case but I don't think my onc will go along with my wishes. Any suggestions to try to convince him?

[Montana]

develop a headache....

[StephN]

Al - you asked a question about reliability of these scans to indicate a brain met. What I found out when I asked that question is that brain mets have a distinct look - round in shape, with a regular smooth-looking surface. This is different from how a brain primary would look. Also, if the spot/s are really teeny tiny they will take followup MRI in one month or so to compare with the last to make sure this is what they have.
Most of us have some kind of other tiny spot in our brain area that is visible on a scan or MRI but is NOT cancer. I have one of those little nodules that just stays the same scan after scan - also one in my right lung.

Also, if the spot on the MRI also has some evidence of inflammation or fluid with it, you have another indicator.

Not to worry - these MRIs are very accurate!

Seems the times they have the most trouble is deciding if they are seeing DEAD tissue on followups of larger mets. So far not the case with my big one, but will have another MRI next week, so ...

[mamacze]

Patti and Steph,

You have both been a fountain of information; thank you for sharing your experiences. It seems like you have both been dealing with brain mets for eons...how long has it been?

I have another question; my onc encourages me to stay tuned into abnormal symptoms I am having; stating that mets won't typically show in a scan until we feel symptoms. He also says that women who follow their tumor markers and get scanned when the go up; vs women who get scanned only when they feel symptoms; have the same prognosis. This leads me to believe that the focused scans and follow up treatments, should be done when I feel symptoms. Does this philosophy hold true for brain mets as well?

And dear Chartermom02, it sounds like you are worried sick!?! Have you had any scans or indication that you have spread past a stage 1? If it is not in your nodes, it is not likely to have spread to your brain...I would wait and see what this latest round of scans turns up.
Love Kim from CT

Kim, this sounds like what my own onc does and goes by actually!

But, tumor markers are not always accurate...

The CA 27-29 is reliable for me when it comes to mets in my body. It has come back low normal the whole time I've been NED in body, but still have my brain mets active.

Symptomatic vs asymptomatic that is the question!

Arguments can be made for both sides of the answer.

Since the standard of treatment for mets is pallative rather than curative, the goal is to control the effects of the cancer on the body. That is pretty much the bottom line. Though there will be opposition to that statement, some angry most likely.

So, if there are no symptoms ie the cancer is doing 'no harm' so to speak, do we do things to the body that can do more harm? Before actually needed?? Some do. Some demand it. Some oncs will throw everything at you but the kitchen sink......

I've been living with brain mets for three years three weeks ........... that we KNOW of that is. Just as in bc itself where the tumor is said to have started something like 7-10 yrs. prior to discovery, the first brain met could have been there for?? maybe a year or more. Minding it's own business, lol!

I'm going away for awhile to enjoy friends, family and whatever else falls my way. Hope this latest post answers more questions than it raises!

hugsxoxo,
patty