Thread: Good Advice?
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Old 10-11-2009, 05:04 PM   #52
hutchibk
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Re: Good Advice?

I forwarded Joe's/our concern over this to the Feel Your Boobies Foundation on Facebook...

Here is their initial response today to my post: "...well, this used to trouble us too -- but what they are actually say is that "feeling your boobies" is just as effective as the step by step process suggested in the Breast Self Exam...meaning that most women who find their lumps are just doing daily routine things....NOT breast self-exams.

Having said that, i feel that this research has been promoted in a way that makes it seem like it's not important at all to feel your boobies -- when actually what it should be promoting is basic breast awareness and being proactive about knowing your body."

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This is not the first they had heard of it and here is an essay written in Jan 2009 by Leigh Hurst, Feel Your Boobies Founder/President:

Recently there has been a lot of press questioning the effectiveness of the breast self-exam (or BSE). The stir began when the analysis of a rather large study was released and stated that the research showed there was no benefit to performing a BSE, and, in fact, that in some cases there was increased harm due to unnecessary biopsies on non-cancerous lumps.

Wow – are you kidding me? When I read this, I initially saw red and thought – how can this be?? A BSE is what saved my life. How can anyone say that we shouldn’t be doing them and why would we discourage proactive habits by so publicly proclaiming them ineffective? And then I took a deep breath, regained my composure, and poked around to understand this a bit more.

As it turns out, the study wasn’t actually saying that BSE’s were ineffective – it was saying that BSE’s, the formal procedure known as a “breast self-exam”, is no more effective than basic breast awareness. It reflected that those women who were simply “feeling their boobies” were just as likely to find a lump as women who were doing formal BSE’s. It also mentioned the idea that many women who find their own lump say that they found it through BSE’s when actually many of them were really just “feeling their boobies.”

And so, my heart rate decreased, my face regained its natural coloring and my mind became peaceful again. After all, my personal experience actually parallels that of the findings publicized from this study. I was not doing a BSE when I found my lump, though, for lack of a better term, I might have labeled it as such initially. In reality, I was simply showering and getting dressed, and, through the course of my daily routine, noticed a change because I knew what was normal for me. I was “feeling my boobies”, which is the whole reason Feel Your Boobies ® (FYB) began. My goal was to repackage the idea of BSE’s using language that makes it feel less like a formal process and more like something you already do.

For those who read this recent press, please don’t confuse the research findings for promoting passivity because that’s far from what was said. The point was whether you breast self-exam (BSE) or “feel your boobies” (FYB), you’re just as likely to find a lump. So, while some of you gals may continue to BSE and others, like me, may prefer FYB, the important thing is that you do it. Are you doing it?
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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