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May 9, 2017 10:36PM
I didn't notice your post until just now. I think that you are right that a big part of my risk profile is related to my IDC being triple negative. But I never had a lump, and the large bed of TN DCIS found in my first mastectomy did not show up in either mammogram or ultrasound. Neither did the ER+ PR+ LCIS and DCIS on the other side, so imaging isn't great for me. The fact that I managed to have four different kinds of carcinoma all at once, some TN, some not TN, is pretty rare, so there just isn't a good statistically significant population to compare to.
The recurrence risk profile for TNBC is high, compared to other types. I find it hard to read research summaries where TNBC is described as "aggressive", with a "poor prognosis". On the other hand, I'm still here, which is more than my surgeon was prepared to give me after my first MX. I was lucky to be restaged after my first MX and pathology, bone scan, etc. My staging went from anticipated stage IV right after MX to stage II. I'm just over two years from diagnosis now and expect I will do 6 month visits with my MO for a long time. It's comforting, in a way. I think I might worry more if left all on my own without a specialist checkup on a regular basis.
I have put off my exchange surgery until after the summer. I was pretty sick from chemo in 2015, and I had my TE surgery at the end of May in 2016. I saw my PS this spring, and have decided that I want to swim, golf, etc. This summer without having to factor in recovery from surger and possible complications. Also, I find that anaesthesia really takes it out of me, with more fatigue for at least a month. I'll be sitting by a lake for the month of July this year, and hope to swim every day with no incisions to worry about!
Gentle hugs to all
12/23/2014 Lumpectomy: Right
1/7/2015, IDC, Right, 4cm, Stage IIA, Grade 3, 0/11 nodes, ER-/PR-, HER2-
1/7/2015, DCIS, Right, 6cm+, Stage 0, Grade 2, 0/11 nodes, ER-/PR-, HER2-
1/12/2015 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right
10/19/2015 Prophylactic mastectomy: Left
10/27/2015, LCIS/DCIS, Left, 6cm+, Stage 0, Grade 2, ER+/PR+
5/24/2016 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right
AC + T (Taxol)