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Dec 15, 2017 08:20AM
Hi everyone I have some great news to share today!
I was diagnosed in June with the same very nasty estrogen positive her2 negative braca 2 invasive ductal carcinoma that has plagued my mothers family for generations.
I was the one that made the diagnosis official for my mother (who had identical type cancer stage 2b 3 years ago!!) and I was a stage 3c when my general physician found cancer!! so NOW insurance company will pay for the rest of our relatives to get their tests as soon as possible to track our unidentified mutation of braca 2.
They can't tell us what it is let alone what it does so no clue what it means to the bigger picture of genetics in general or our specific family.
I had full palatable mass reduction on all 4 tumors but a 4.5 cm tumor in my armpit that started out the size of a golf ball, only the tiny flat pin can be felt now where it was. Lymphs are a little harder to tell but I was supposed to loose 5 and it may be less now but won't know until after surgery and reconstruction january 9.
I had a phenomenal response to the first set of 4 more aggressive chemo with the nuclear push every 2 weeks. My numbers all looked like I was not on treatment at all until The weekly treatments of taxol really wiped the floor with me by about the 5th treatment on, and side effects were SO much worse than first kind that I begged them to switch back!
That was most surprising to my oncology team that all my numbers looked so great but I was feeling so awful I was ready to quit treatments to run away and hide!
I also have had ptsd for over a decade so I'm a little harder to treat when I am very hurt or sick so we had a therapist ready to see me before and during chemo to help everyone on my teams understand my special needs during treatments.
I could never have made it through that without my mom by my side with the same team of doctors that cured her!
The one thing that surprised us all the most was the fact that the same cancer that hit my mom in her late 60s struck me at 41! The part that started turning heads is that 2 other cousin branches of moms side had 3 similar active cases NOW ages 40-51!
People are starting to ask where we went to the beach most often as a family and the implications of that in my state are too disturbing to deal with right now but nice to see that it is under investigation finally!
I was so blessed to find one of the top centers in the country for the type of cancer we have, and they got me through diagnostics and started treatments in record time which kept me from becoming a stage 4 in a matter of weeks!
My doctor was on the phone with me in less than an hour after my test to tell me it was all still encapsulated and not in any bones so we were both sincerely happy at the words it's ONLY stage 3 breast cancer! I hope getting tested early will spare my teenage daughters that experience.
Since I am a boba fide mutant I don't get to do any kind of trials for chemo but I am doing skin saving nipple saving double mastectomy... they've got an option to bank nipples by my c-section under belly fat for second surgery if tissue is viable!
If not they can make replacements from other skin anywhere I can spare it! Wish me luck everyone and I will be back to let you know how it went!
Happy holidays and best wishes and comfort to all of you for helping me to be brave enough to talk about my journey
6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2-
7/13/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel)
9/1/2017 AC + T (Taxol)
1/8/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement
1/8/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement