HI, Im 62 and was diagnosed with IDC with probable node involvement in March. Had mastectomy and node clearance in May with plan for chemo and Letrozole to follow and eventually some kind of delayed reconstruction. Post surgery, I had a stage 1b tumor in my breast with some DCIS, 1 node of 19 had cancer. My NPI was 4.2 and an Oncotype DX came back as 8, so the plan was changed, no chemo, straight to Letrozole. All good, except the pathology report found evidence of extra capsular extension and ‘possible LVI’. I dont understand why Im not getting chemo anyway for the EXE/LVI. Havent had this discussion with my consultant or BCN yet, I will be doing that, but wondered if anyone here has any similar experience or advice ? I get that the Oncotype rules out chemo for primary recurrence, but does that apply to the EXE/LVI as well ? I did have a CT that showed no signs of remote spread before my surgery but that was a few weeks before surgery and Im worried there could be rogue cells in my lymphatic system looking for a new home. Im just confused, I was all set for chemo and whilst Im glad to not need it I cant quite accept that I dont need it…
Hi
I’m not quite the same as you, I had a 16mm Idc and a lumpectomy, I then went on to have all my lymph nodes out it was found in two out of eight. It mentions LVI on my letters but nobody has ever mentioned this to me. I was 58 at diagnosis and had onco test which came back at 11, I was told I wouldn’t benefit from chemo, I had five days radiotherapy in March and now 10years of letrozole.
I am seeing a new consultant this week for my follow up as I have moved and changing health trusts, so maybe I will ask them.
Hope somebody responds to you
Take care xx
Hi, thanks for sharing. I was told I didn’t need radiotherapy because I had a mastectomy and full clearance. It just seems like there should be something sweeping up any leftover cancer cells at the end. Maybe I’ll get used to not having any further treatment, and stop thinking about remote spread, but seriously, I think I’m going to worry about it for the rest of my life 
That’s what I was told my radiotherapy was for
Xx
Hi Alison, my situation wasn’t quite the same as yours as pathology showed I had three positive nodes so didn’t have the Oncotype test and proceeded to chemo. However, at no point was LVI mentioned to me until many months later when I acquired a copy of my pathology report and I saw LVI noted on it. When I asked a different oncologist about it she said it didn’t make much difference if you’re node-positive as the cells have to travel through the lymphovascular system to get to the nodes, hence the LVI. That made sense to me (hope I’ve explained that clearly!) but still worth getting another opinion from your team!
Hi
Was diagnosed July 2022 aged 61 - ILC in left breast (also, simultaneously, invasive mucinous in right). Both smallish, both Grade 2. Opted for double mastectomy (re strong family history); staying flat. Oncotype scores 9 and 7 respectively, so no chemo.
One node on left tested positive (not a standardly-tested sentinel node, but one which my observant surgeon noticed during surgery). It was reported as ‘extracapsular’ but no further discussion was had about the implication of that, nor any mention even of LVI.
I, like you, now fear rogue cancer cell/s broke out and travelled to lie dormant somewhere.
Axillary clearance (my choice instead of just ‘blind’ radiotherapy). No other affected nodes, out of only 6 others found !?! Lazy lab work? (I developed lymphoedema for my trouble.)
I did have adjuvant radiotherapy, but due to backlog, this mop up didn’t happen for 5 months ! Horse, bolted?
I tried with an AI (Anastrozole) for 10 months (along with the first 2 of 6 planned 6-monthly zoledronic acid infusions) but decided life without oestrogen was causing too much pain, immobility, disturbed sleep and rapid ageing, so gave up both meds without trying other forms/brands because, at the end of the day, they all render oestrogen impotent in ALL its functions. They also carry additional serious risks themselves.
I have a few outstanding concerns to address before I can feel some sort of closure, but have let this slide after beating my head against a brick wall with 3 oncologists. I was granted a subsequent CT scan with contrast and nuclear med bone scan, but my MDT wouldn’t grant me an MRI on a sore rib area. (I intermittantly panic that it’s bone mets.)
I will have that discussion when I find someone who’s prepared to alot me sufficient time for a grown-up, in-depth conversation !!