I can already tell that this is an incredibly caring community even though it's one none of us wanted to join. After a quick chat with the mods, they suggested I start a thread in this forum.
I'm 61 and otherwise healthy and very active. I have been diagnosed after a lumpectomy with Multi-focal (3 Foci) Ductal Carcinoma In Situ (DCIS 20%) and IDC Type: Solid and Cribriform Carcinoma of the Breast on September 2, 2021 (Right, .2 to 1.7cm, Stage IA, Grade 1, Nottingham 5/9 ER+/PR+, HER2- (IHC)). I had a very confusing false negative biopsy on two of three foci on July 13 with results reported July 20. Surgeon still thought larger, unbiopsied lesion was cancer so I opted for Lumpectomy on August 27. Now it's all dxed as cancer. Margins are negative so that's good.
Initially Lymph involvement was thought to be negative (two ultrasounds and two 3D mammos in June and August) but now there appears to be some ("lymphovascular invasion present"). Because my biopsy was negative, taking a sample of the sentinel node was not indicated or performed. Surgeon has now ordered PET scan to help dx and I have meetings with the RO and BO (radiation oncologist and breast oncologist - am I using the terms right) that will be scheduled this week. The PET will tell us whether more surgery is indicated regarding lymph or other involvement and what kind. My breasts were and remain very dense even after pregnancy and menopause.
My questions for are
- is the timeline too slow
- which physician is the "quarterback" of my case - or is there one
-who else has gotten a false negative initial biopsy and how common is it
-what questions should I ask my constellation of doctors
As a type A prime person this seems to be taking a very long time. My initial screening mammogram was May 24 and here it is yet another holiday where all I have is questions and not a lot of answers.
I hope I'm not whining too much as so many others have very serious and hearbreaking dxes but ugh.
Thank you so much for your help in advance. Hugs
Dx at 61. Initial biopsy false negative. Multi-focal IDC with 20% DCIS.
8/27/2021 Lumpectomy: Right
9/2/2021, DCIS/IDC/IDC: Cribriform, Right, 1cm, Stage IA, Grade 1, ER+/PR+, HER2- (IHC)
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