question?

[penelope]

how common is brain mets as the first site of metastisis? Or does it have to be in your bones/liver/lungs first?

[StephN]

Hi -
That is a good question because it is more common than one might be led to believe. We have had a few women post here who have had it only in their brain as metastasis.

10% was a number that came out in a study presented at the Dec. 2004 Breast Cancer Symposium in San Antonio. This was specifically for HER2 positive patients. The study also mentioned than many of this number experienced NO symptoms.

I also had NO symptoms and had a tumor of one inch in diameter growing in my cerebellum. This was not my first mets site, but I was NED elsewhere and still am.

[astrid]

I have read "The most common region is for BC metastasis is bone, followed by the lung and liver."; however that is for average breast cancer. I wonder if brain metastasis is more common with HER2+ women as Herceptin prevents reoccurrence with the exception of the brain.

[Becky]

Steph is right about the brain mets statistic. However, for Her2+ bc, the lungs is the most common site for first met (21%), followed by the liver and then the bones.


Her2 likes to be different and interesting in comparison to the HR+ kind.

Kind regards

Becky

[marymary]

My first and so far only metastasis was to the brain. I had one tiny lesion and one that was slightly larger. It was gamma knife for me. I've been back on Herceptin since then, it's been slightly over a year since surgery.

I have a PET/CT scheduled for July 13th and I'm hoping that the Herceptin is still working its magic.

Mary

[Emmay]

My sister had a 2.3cm tumor in rt breast diagnosed in May '03, lumpectomy 7/03 no positive nodes, started AC chemo 8/03, Taxol started 12/03, mets to right breast diagnosed 1/04, rt brst mastectomy 2/04, Herceptin started 3/04, radiation 3-4/04, headaches 9/04 diagnosed by MRI as brain mets, 1 golf ball sized brain met removed in craniotomy 10/04, whole-brain-radiation 11/04, extreme extreme fatigue from WBR from 12/04-3/05, Lapatinib (Tykerb) trial 2/05-3/05 but brain mets still grew, second craniotomy 5/05 removed 3 med. size mets, stereotactic radiation to tumor beds by gamma knife 6/05. My sister just this past Monday had her third session of CyberKnife radiation treatment to 4 new small mets -- I think the WBR has minimized the number of mets that grow, but new ones do keep showing up. Give her experience of a relatively small tumor w/no positive nodes at diagnosis, I would recommend starting on Herceptin immediately to get the tumor cells in the body and before they reach the brain, because the blood/brain barrier prevents Herceptin from entering and stopping brain metastasis. Tykerb helps some people, but not all.

[Cathya]

Emmay;

I believe that I have heard of herceptin being directly injected into the brain...I am not certain but it was discussed on this site. Would this be an option for your sister?

Cathy

[Emmay]

Thanks, Cathya, for the suggestion of herceptin being possibly injected directly to the brain. I had seen an abstract about that procedure being tried with one patient in Europe. I asked my sister's oncologist about it, and he said that since a fair number of her brain mets have not been close to the surface, it was dubious how much the herceptin could penetrate to be effective. And my understanding is the blood-brain barrier is throughout the brain tissue, not just a surface membrane that can sometimes be breached.

Since my sister has already had two craniotomies, we don't take the idea of another surgery lightly. I so wish Herceptin was more bioavailable to the brain tissue. She tried the Lapatinib (now called Tykerb) trial last year, but it didn't work for her. That said, she's had Gamma Knife and 3 rounds of CyberKnife treatments, and each time the new small mets have been arrested. She has been through so much, but thank God she is here, her personality still very much my sister, and her memory is often better than mine (it's her short-term memory that's been more noticeably effected...but then too, after age 45, whose hasn't?).