Why do brain MRIs

[elayne]

Hello all:
I'ma regular lurker and have learned so much from this site. I have a question about the oft-cited advice on the site to insist on regular brain mri's for stage iv.

I presume such regularity would allow one to catch the mets earlier. What is the treatment advantage? Is there an actual survival benefit?

My oncologist is not a huge fan of lots of scanning -- and frankly given how incredibly stressful it is I don't enjoy it much myself. My doc would probably be more inclined not to scan without symptoms. But I know that my doc would consider otherwise if I had other information.

Thanks in advance for any insights anyone can share.

[Cindy H.]

My onc has the same philosophy on scanning, however, I asked for a brain MRI 6 months ago and he poo-pooed the idea since I had no symptems. Well, lo and behold Mid May of this year I began to get dizzy, ran an MRI and found a 3cm cystic tumor in my cerebellum which I had to have a craneotomy performed. I also hav a .4cm tumor in my thalmos and a .3cm tumor in my cerebellum. I go in for Gamma tomorrow to zap all 3. I wonder if I could have avoided brain surgery and have had 2 gammas. Hindsight is 20/20. The steroids stink!!! I am stage 4,HER2, never NED and dx Jan 2003 currently on Abraxane. I still work and lead a fairly normal life, which is what my onc aims for. I see him Friday and will ask about a PET scan soon. I'm currently getting chest x rays periodicly.

[eric]

Does anyone out there know if tumor markers can be a reliable indicator of brain mets (for those that the markers seem to be reliable for)?

[Lisa]

We here at Her2support.org lost a dear friend several months ago. Her doctors delayed too long in giving her a brain MRI, and she brain tumors "too numerous to count." Even after whole brain radiation, they persisted and one worked its way down her spine, causing paralysis from the waist down. Several weeks later, after surgery and radiation were ineffective, she went into coma and died.

Mary's case prompted many of us with mets to ask our oncs for brain MRIs as part of our regular scans. Few if any of us had ANY symptoms. Yet, several of us discovered to our surprise (and the docs') that we had brain mets. I had approx. 20 small ones. No symptoms. Others might have had a couple of large ones. No symptoms.

Breast cancer typically metastasizes to the brain, lung, liver and bones.

THIS is why we urge Stage IV women to have brain MRIs NOW. MRIs show more detail in brains than CTs, but even CTs are better than nothing. Like any mets, the earlier caught the better for treatment. One to a few tumors may be able to be treated with CyberKnife or GammaKnife, rather than whole brain radiation.

And as far as tumor markers, it was interesting for me. My markers had always been right on. They did NOT go up for the brain mets. Don't know whether the blood/brain barrier had anything to do with this or not.

Love and light,

Lisa

[lor]

Does anyone know how often we should insist on getting a brain MRI?

Has anyone had their tumor markers done while on chemo? Or is it normal to wait until you are done with the chemo?

Thanks for letting me pick your brains!
Lori

[StephN]

First on the question of why and when to have a brain MRI.
Her2 positive BC patients seem to have a higher incidence of brain mets. These can come as either the first metasteses or follow mets to organs and bones. Since there have been a few women post here who had the mets to their brain prior to any place else, it seems a good idea to keep an eye on any changes in vision, balance or any other unusual symptom such as numbness in arm or hand. If you have any of this, whether stage IV or not, get your med onc to order a brain MRI. PRONTO!

Stage IV patients should find a way to get themselves a brain MRI at least as a screening once a year. I have been doing that and sure enough, three years after discovery of my liver mets there were 2 tumors in my cerebellum. AND I had NO symptoms. One was 3cm in diameter - a bit over 1 inch. Gamma Knife seems to have taken care of them.

Tumor markers. We started drawing CEA (along with CA27-29, which was in indicator for my other mets) a year before my brain mets were caught. This was at my suggestion when I learned from this board that some brain mets made CEA. Sure enough that marker started edging up last summer and by the start of winter was at the high range. I had a PET scan and other tests - nothing else turned up other than the 2 brain mets.
Now my CEA is holding steady at POINT 8, and this gives me a lot of confidence that my brain mets are truly dead now.

I talked to my med onc this week about continuing with both these markers and he is wanting to check the CEA every 6 weeks and the CA27-29 every 12 weeks. This would naturally change if any sign of cancer activity presented itself.

Hope this helps.

[pattyz]

Eric,

The CA27-29 is very reliable for ME when it comes to body, but has not been at all reliable for my brain mets. Perhaps someone else has had a different experience, though.

pattyz

[joy]

I just had a brain mri and my usual CT and I am happy to report that there is NOTHING IN MY HEAD ( my ex-husband said he knew that all along). My liver and lung nonsense (which is fairly minor now) is stable or smaller with nothing new. I have been out of chemo for 2ish years and done a lot of hormonal manipulation and of course herceptin and lots of complimentary care.

I just wanted to share that because brain mets can be such a scary thing (always a worry) and scans and their anxiety just stink. But the brain mri has its value, either mets are caught early OR you find out they aren't there so in a bizarre way it is win/win.

Are there people out there who have lived with visceral involvement for a long time and have not ever developed brain mets? I just would like to know as it is always a concern for me.

Love,
Joy



dxed stage I-2000 (age 32)
lumpectomy, 4 A/C's, radiation, tamoxifen
dxed stage IV-2002
7cmx9cm liver tumor plus many more
small spots on lungs
taxotere/xeloda (1 year) and eventually herceptin
femara, zolodex, herceptin (14 mos)
aromasin, zolodex, herceptin ( 5ish mos)
Current tx-reverted back to pre-menopause and tricking the cancer cells WITH estrogen = herceptin (age 37-picture taken in April in Cancun)

[Lisa]

In discussing this today with my onc, he said that since we're helping women with bc live longer. we'll see more and more brain mets.

Love and light,

Lisa