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Old 09-13-2004, 03:04 AM   #1
arati
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in india i feel we are behind you in the west.. my doc insists that tho i am a mets bc patient with mets in lung and liver and bones that there is no need to hv brain mri unless there is a pain.. or headache.. i hv none of these.. what is the thinking..what do u say
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Old 09-13-2004, 03:46 AM   #2
celina
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arati,
I would imagine that there are still many who feel as your doctor..some people on this sight still feel that reg. scans are not necessary. However, it is MY opinion that brain MRI's, particularly for those are have mets to organs, should receive regular scans for two reasons:
1) There are many documented cases where symptoms did not exist and yet there were brain mets.
2) Early detection of brain mets means a better prognosis. It is much easier to sucessfully treat smaller tumors with WBR. Radiotactic surgery (Gammaknife) is usually done for tumors that are smaller than 3cm.
My sister, for one, surely had brain mets well before she developped symptoms. Only with the onset of symptoms was a scan scheduled. By that point, she had numerous cluster of tumors.
Hope this helps!
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Old 09-13-2004, 04:10 AM   #3
Christine
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We have recently become aware in this HER2 bc support group, that as many as 30% will eventually have brain metastases. There were even those who did not have any symptoms, but found to have brain mets after insisting on this MRI. A benefit is that tumors are found early and treatable w/ radiation therapy. As you may already know, HER2 cancer cells are high grade, and can travel from the lymph nodes to the brain or the lung to the brain, which I feel are the pathways. Our insurance is usually not in agreement with the cost of an elective MRI, but pays without Question when symptoms appear first. A few have reported to have headaches and some others dizziness, that prompted the Oncs to get an MRI to rule out brain mets. Thank you for your QUESTION!
Hugs AND WELL WISHES
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Old 09-13-2004, 09:31 AM   #4
lauren
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Please distinguish between the metastatic population and the non-metastatic population when you state that 30 percent will get brain mets. Surely, you can't mean that 30 percent of ALL of us will get brain mets, right?
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Old 09-13-2004, 12:41 PM   #5
Kristen
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farther down below, there is a topic on brain mri's. Most of the people who reported brain mets had metastatic cancer. 2 however, had no symptoms amd it didn't go to any major organs before going to the brain. The number is small, but from what I have gleamed thru this board is that you don't want WBR, and if the tumors are large, gamma and cyber knife are not options. It is something to consider. I know I would like to have one yearly, which my neurologist does anyway for other reasons. hope this helps and I got it right. take care k
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Old 09-13-2004, 10:24 PM   #6
Colleen
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I wish I had known 1 month ago what I knew now. I would have absolutley insisted on an MRI for my mother!! With statistics that high,why wouldn't an MRI be standard procedure? In my Mom's case,she did not present with what are considered,typical symptoms. We all thought she was suffering from "chemo brain" for at least 2 weeks.(cognitive deficits) From the time we got the MRI and she started treatment,just a matter of days, the symptoms got markedly worse.I had no idea this "beast" could grow so fast.Just over halfway through WBR,she is starting to show glimmers of improvment. I keep kicking myself that we did not catch this sooner!!
So my advice to anyone would be ,insist on an MRI!
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Old 09-14-2004, 03:05 AM   #7
lauren
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actually, that was quite helpful, but it does not address my question to christine - 30 percent of WHOM will eventually get brain mets? 30 percent of "us" means 30 percent of WHOM? 30 percent of all BREAST CANCER patients? 30 percent of all metastatic breast cancer patients? 30 percent of all metastatic breast cancer patients who are her2neu positive? 30 percent of all breast cancer patients period who are her2neu positive? 30 percent of all her2neu positive patients who take herceptin?

you get my point....

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Old 09-14-2004, 03:07 AM   #8
lauren
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again...what statistic? 30 percent of WHAT POPULATION get brain mets? This is a frighteningly high percentage, so I want to know WHAT population we are talking about.

Glad your mom is doing better, btw.
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Old 09-14-2004, 03:21 AM   #9
Cindi
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Lauren,

I don't have a specific source to back this up, but I am pretty sure that the 30% applies to the metastatic BC group. I don't think it differentiated between Her2+++ or not.

Cindi.
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Old 09-14-2004, 05:30 AM   #10
Joe
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30% of ALL metastatic bc patients both HER2+ and HER2- will eventually develop brain tumors. Since women who are HER2+++ are living longer, their rates are generally agreed to be slightly higher.

Warmest Regards
Joe
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Old 09-15-2004, 12:41 AM   #11
Lisa S
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To those who freak out at percentages....try to think of it the other way....70% WON'T get brain mets. Is that better???
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Old 09-15-2004, 12:41 AM   #12
Lisa S
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To those who freak out at percentages....try to think of it the other way....70% WON'T get brain mets. Is that better???
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Old 09-15-2004, 12:42 AM   #13
Lisa S
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To those who freak out at percentages....try to think of it the other way....70% WON'T get brain mets. Is that better???
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Old 09-15-2004, 09:26 AM   #14
Angela
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My onc is recommending at CT scan instead of an MRI. Her reasoning is that the CT can find small enough mets to treat before symptomatic... tiny mets found on MRI may be over treated (she says) - WBR is no picnic and these tiny mets may go for long periods of time without causing any trouble...anyone hear anything similar. She said that she would do an MRI if I insist on it...
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Old 09-16-2004, 01:15 AM   #15
arati
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what is WBR.. sorry it sounds like a word that all metastatic patients shd know,,but hv never heard it..NED means no symptoms right?
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