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Old 02-10-2009, 02:21 PM   #1
lisajones4
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Location: Chicago, IL
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Tamoxifin and ER-/PR-

Hi everyone. I have a friend who is in the midst of her treatment. She is HER2+++/ER-/PR-. She had the standard 4 AC, 12 Taxol/Herceptin and now will be on Herceptin for the rest of the year. The doctor wants to put her on Tamoxifen for five years as a preventative measure (event though she is not ER/PR-) for her other breast. Has anyone heard of this? It just does not make sense. Any help would be great!

Lisa
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Old 02-10-2009, 02:34 PM   #2
mts
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I am barely ER positive and PR negative... and taking tamoxifen
Sometimes a low ER does not warrant tamoxifen. In my case even a little positivity was enough for my onc to put me on it. His comment was like being pregnant... either you are or your not.
A pathologist friend told me that some of the ER "degrades" between the time of the surgery to the time it sits under the microscope. If this is true, then I am higher than believed to be.

Maria
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Dx'd 8/04 at 41
Stage 1 for some onc's; Stage II for others (if you add up the sizes of all tumors).
Infiltrating DCIS
HER2+, ER+10% & PR-
.9cm tumor not visible on mammo, but palpable; visible on ultrasound
Lumpectomy/ clear margins, no nodes
Had Breast MRI after lumpectomy that revealed two more tumors in same quadrant(.4cm and 1.6cm) that were not visible on either mammo or ultrasound.
Re-excision
DD AC+T; Herceptin one year
Rads
NED/Taking Tamoxifen reluctantly
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Old 02-10-2009, 03:07 PM   #3
lkc Gumby
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Posts: 437
Hi Lisa, I was put on Tamoxifen as a prophylactive measure for my non affected breast.It's very unusual. My affected breast was er/pr negative.
Anyway, I developed endometrial thickening and went off it.
The thickening resolved after a few months.
( I did opt for a proph. mast eventually)
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Linda

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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Old 02-10-2009, 04:48 PM   #4
Debbie L.
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at higher risk?

Hi, is your friend for some reason at high risk of a new primary in the other breast (like BRCA mutation or strong family history, lobular cancer, etc?)?

Tamoxifen is used for prevention in high-risk women, but they have a hard time showing their benefit is greater than their risk (of side effects).

I might be a good idea for your friend to get a second opinion before starting Tamoxifen. And if it's contrary, maybe even a 3rd one. It could be done remotely (phone, fax, email).

Maybe there's more to this story than we know?

Debbie Laxague
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