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Mar 13, 2018 07:42AM
Veeder - re positive gene mutation: are you going to watch and wait? I have a first cousin who tested positive late last year and has since had a bi-lateral mastectomy and her ovaries removed. Neither of us had brothers or sisters, or surviving parents or aunts to talk to about family histories or genetic mutations, so it made sense to get tested. I admit I am relieved to be negative, although I don't think I will ever be sure which is best in my situation: mastectomy vs radiation/hormone therapy. I knew it increased the risk of prostate cancer for men, but did not know about the increased melanoma risk.
Paco - I reviewed my Consent for Radiotherapy this morning and noticed for the first time that I could opt out at any time - which I agree is comforting - and that I'd be getting a CT scan ( I wondered why you and Veeder were talking about scans...). Reading through the list of potential side effects is chilling. Still, I know so many people who have gone through this without ill effects. Maternal and paternal aunts have had DCIS - radiation was not kind to one of them, but it was a 20 years or more ago, and the RO assures me things have changed. :)
Honestly, until I was diagnosed I never knew DCIS existed, or that there were so many variations of breast cancer. How quickly we become schooled. Since my diagnosis I have two friends in Atlanta who have been diagnosed with DCIS, and know three more who have had it - some foregoing radiation, some nixing hormone therapy, some doing exactly was the doctors ordered. It's crazy, how prevalent this disease is. I suppose until you have it, or have gone through it with someone, you just have no idea how many decisions have to be made, how impossible it seems to make the right one, or how grateful you can feel that things are not worse. I was trying to come up with the right analogy for how I felt yesterday when the geneticist called with my results. It was something like exchanging a pogo stick for a unicycle - i.e. a little easier.
12/20/2017, DCIS, Left, <1cm, Stage 0, Grade 1, ER+/PR+
1/22/2018, DCIS, Left, 1cm, Stage 0, Grade 1, ER+/PR+
1/23/2018 Lumpectomy: Left
3/22/2018 Whole-breast: Breast