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Old 08-24-2009, 05:58 AM   #6
mts
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Join Date: Sep 2005
Location: Central Florida
Posts: 503
Re: Tamoxifen for 5% ER?

Marcia,

I posed this same question a few years ago... I too am 5% ER+ and PR neg.
I spoke to a pathologist from MD ANderson Texas-- and she told me that samples sent from the operating table to the lab to be frozen can lose some viability and therefore a 5% result may actually be higher... I had my ER checked 3 times... one in Florida, a second opinion that was sent to MD Anderson and a 3rd sample that was sent to UPenn... all came back different (but all ranges between 5% and 15%.

I was on tamoxifen for approx 5 months at first, and I really could not tolerate it. People told me that side-effects -in essence - was proof that the tamoxifen "was working".
My onc has gone back and forth on this with me since 2005... He has told me time and again that a little ER+ is still positive and that although the benefits may not be as great as someone who has a higher ER, its still a benefit...
I have not been on Tamoxifen for nearly 3 years and feel great. I know I must sound like a wimp- especially since there are so many women who would prefer to have Tamoxifen side effects vs. chemo... but I truly felt awful taking the tamoxifen (vertigo like side effects). Although I am reminded of my bc every time I look in the mirror, I don't have the Tamoxifen thing sitting on my shoulder. I am comfortable living with my ounce of doubt. I am now 5 years post diagnosis... been through it all and feel at peace with my decision.

In the end, its what ever you can live with. Both physically and mentally.

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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