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Thanks, Becky. Yes our pathologies are extremely similiar. I was diagnosed when I was 37.5 and I just turned 39 last month. My period returned 6 weeks after chemo ended so I didn't stay in chemopause very long which probably isn't so good.
The research that made you decide to get your ovaries removed is exactly what I have on my mind....I, too, believe that many oncologists believe that tamoxifen does not work as well on the ER+ but PR - population. But I get the idea they really have no idea sometimes and I am not really near menopause at my age.
On the other hand....after listening to the Sledge podcast and talking to Slamon I get the idea that there is a possibilty that hormones are not driving our HER2 cancers especially if we are highly HER2 positive and moderate to low hormone positive. I would hate to "overtreat" (i.e., ovary removal and ai at my age) as much as I would hate to undertreat by only taking tamoxifen given my close to negative PR status. I just wish we had better information.
Thanks for the advice on institutions to send my slides to for further review.
Best,
Janelle
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Janelle
Diagnosed October 2006 at age 37 wtih grade 3 IDC and high grade DCIS
Stage 1c triple positive, no node involvement but
vascular invasion
multifocal disease
Lumpectomy November, 2006
A/C every 3 weeks (started Jan., 2007 and finished March 2007); followed weekly Taxol (finished June 2007) concurrent with Herceptin (finished March 2008);
Bilateral Mast with immediate recon in Sept 2007; finished recon Dec. 2007
Started 5 years of tamoxifen Nov. 2007; started peptide vaccine clinical trial at MD Anderson October 2008 and finished active part of trial in April 2009 (monthly injections of AE37 peptitde (HLA type specific) with GM-CSF or GM-CSF alone depending on if I was in experimental or control group); started Zometa infusions June 25, 2009- 4mg every 6 months for 3 years (taking it "off-label" to try to prevent mets)
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