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Re: Triple Positive
Hadit, the tumor in my right breast was HER2 equivocal ... and like you I was told I didn't need chemo, etc. In the end it didn't matter because then the triple positive HER2+++ was found in my left breast. I like to think the Herceptin actually worked to prevent BOTH tumors' stray cells from setting up shop and coming back someday. Equivocal still isn't the same as negative. It just means, in the end, there aren't enough HER2 receptors to qualify for Herceptin. So maybe this is better protection for you in the long run.
Not that chemo doesn't totally suck. It sure as heck does!
I had a double mastectomy and all my nodes were clear, so I didn't have to have radiation. I am hedging my bets with that, too. Once you have radiation ... you can't have it again. I figured this way, if I ever have a local recurrence (totally different than metastasis to distant organs, the risk for this is approximately the same whether you choose lumpectomy or mastectomy, there are stats that say lumpectomy is actually a bit better) I could still have the radiation if I needed it.
Each of us has to decide what is best for us. I chose not to have any reconstruction, either. I totally and completely support every woman in this horrific situation to choose what she feels is best for her. Period.
Carol Ann
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July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.
Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".
Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.
Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.
Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.
Nov 25, 2013 Begin 6 rounds TCH.
March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!
March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.
March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)
April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm
May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)
June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia
Nov 17, 2014 FINAL Herceptin!
Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.
Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.
Dec 17, 2014 Port is OUT!
January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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