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Old 11-07-2007, 12:47 PM   #8
Emmay
Senior Member
 
Join Date: Apr 2006
Location: Boston
Posts: 66
Dear John,

I think you should follow your instincts on this and seek a second opinion- your Plan B sounds more appropriate to me. The largest brain met at 1.5cm is still well within the size range for effective radiosurgery, and more than one met can be targeted at a time. My sister has had a number of cyberknife radiosurgery treatments at Beth Israel Deaconess Medical Center in Boston over the last 3 years as small mets have appeared, and that treatment has been very effective at arresting the brain mets. The treatment was easy and painless; the only difficult side effect came when she was prescribed the steroid decadron to control swelling -- this can have strong effects on appetite, mood, coordination and ability to sleep, but if the dose is minimized and of short duration, it's not too bad.

When my sister was first diagnosed with 3 brain mets, they were too large for radiation treatment, and she had a craniotomy, followed by WBR. The side effects from WBR took a few weeks to appear -- it caused extreme extreme fatique that took several months to abate, in addition to the steroid side effects (which are dependent on dose and length of use). It's impossible to know now if/how many "seeded" mets were stopped by WBR -- but it's important to note that she has still had twelve or so additional mets appear, 2-3 at a time, since the WBR treatment. I'm not a doctor, but I would think that your doctors would be concerned about the breast tumor's ability to "seed" mets to other locations - why not remove the original source first.

We were not as well informed about WBR as I wished we had been when it was recommended for my sister. That said, I want you to know that, in spite of extensive and numerous treatments (lumpectomy, mastectomy, AC/T chemo, Herceptin, craniotomies, WBR, numerous Cyberknife treaments, etc) my sister(age 50) has recovered from each treatment, and while not as energetic as she once was, she is still very much herself, and we thank God and her medical team at BIDMC for that. Her doctors are in contact with and attend conferences with doctors from Dana Farber -- I know you will be in good hands seeking opinions from Eric Winer et al, as Joe recommends.

Best regards,
Emmay
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