Dec 12, 2016 05:06PM JEA16 wrote:
Wow, I never expected to see anyone with a situation that so closely resembled mine...at the same time, no less! You are definitely not alone. I haven't posted a lot, though I do stalk these boards regularly and they have been a huge source of information and support. Still, I haven't seen someone with such a similar dx!
I was 34 when diagnosed and my youngest was only just about 17 months old. I had also just finished breastfeeding a few months prior so the docs were quick to write off the VERY large palpable lump. It took about a month to get my appt with the breast surgeon who did the biopsy and to confirm it was cancer. At the same time, my genetic testing came back positive for THREE mutations - BRCA1, TP53 (shortly thereafter I was dx with LiFraumeni based on family history and genetics...SUPER rare), and a third one of uncertain significance. I still have yet to find someone that can relate to that genetic soup, lol.
I had my bilateral mastectomy on 9/20 and final path showed the tumor was 11cm+, mostly DCIS with many areas of microinvasion <1mm (they didn't even count them all, there were so many) and an area of invasion that was about 3mm (all grade 3 with comedonecrosis). My tumor involved the nipple and went almost to the chest wall...and had lobular involvement. Mine is ER-/PR-, but Her2 +++ with "highly unfavorable" Ki67. It's hard to find a lot of reliable information on this situation since it's so uncommon, but from what I've been reading the biology of this booger is pretty aggressive. I too have worked myself up worrying about my prognosis and the ramifications of all this with 3 little kids...but i just keep telling myself that we caught it early...and I WILL be dancing with my boys at their weddings.
I'm so sorry that this disease affects anyone, but it seems particularly unfair for people so young. I'm sorry that we have to be in this together, but for what it's worth I can relate, and I am here if you need to vent or just need some support!