Ibrance and IBC?

dancingdiva

anybody on Ibrance for IBC?

I've had a recurrence in my opposite lymph nodes and in skin, red patch on boob. Path says IDC/IBC. So they started me on Ibrance and Femera. Is this normal?

d

talpha1

I'm taking Ibrance and Femara for IBC. I was initially diagnosed with IBC in 2013, recurrence in my lungs in 2016, which is when they removed my ovaries and started the Ibrance and Femara treatment. I'm almost done with my first 3 week cycle.

Key2

Hi Dancingdiva

I have IBC stage 4 breast and bones on 5/2015 had chemo XELODA and then radiation and XELODA in January 2016 for 2 months started on IBRANCE and LETROZOLE in March 2016.

So far doing great little side effects just weight gain!

Feel free to reach out if you have any question....

LoveFromPhilly

hi! I am bumping this thread in hopes of understanding my diagnosis better.

My pathology report from April 2017 biopsy states that I was/am(?) Er+\PR+\Her2- and also my scans af the time said IBC.

I also thought I was told i had/have (?) IDC.

I’m confused now!

I have emailed my MO to try and clear up the confusion.

I am not sure what a major difference it makes/would make to be IBC and have bone metastasis at time of diagnosis versus being IDC and having bone metastasis at time of diagnosis?

I am on first line of treatments which include Ibrance, letrozole, Xygeva and lupron.

Thank you for your help and inpuy

LoriCA

IDC is the pathological diagnosis while IBC is a clinical diagnosis, so my IBC is pathologically IDC. The only real indication of IBC that you would see in a scan (what kind?) would possibly be thickening of the skin, and then it's confirmed with a skin punch biopsy because IBC infiltrates the skin. If there's no skin involvement, it's not IBC. Because IBC initially grows in layers/sheets, not a lump, it doesn't usually show on a scan which is why it's so hard to detect. Did you have the heat, redness and inflammation that would indicate IBC? Even my pathology report indicated that the cancer was sheet-like, which further confirmed the clinical diagnosis of IBC. And it has very high Ki67 and uptake values, both the first time and when it re-occurred a couple months after the first round of chemo.

True IBC requires aggressive treatment because it grows very fast and is stubborn. If you were Stage IV de novo with IBC I'm very surprised they didn't immediately start you on an aggressive course of chemo. I had mets throughout my skeleton and my liver and started 5 months of chemo within days of my Dx. I was told I'd be lucky to make it 60 days if it didn't immediately respond. We could literally watch it spread every day while we were waiting for the results of the biopsies and scans.

IBC does eventually cause easily-seen tumors, especially when it re-occurs, but by then the symptoms are usually quite severe and unmistakable.

Are you stable now and have your symptoms cleared up? If slow-acting hormonals and targeted treatment got it under control for you without doing chemo first, it's possible that you had some symptoms that possibly indicated IBC but it wasn't true IBC. What symptoms did you have, or what showed on the scan, that made them think it is IBC? Hopefully your MO can clear up the confusion and explain why that course of treatment was chosen for you if they thought you had IBC. Everyone on this thread (and everyone I know with IBC) had aggressive chemo first before moving on to hormonals or targeted treatments.

LoveFromPhilly

hi Lori!

Thank you so much for your thorough response! It helps so much!!

To answer your questions: I did have swelling, pain, a retracting nipple, thickening of skin, redness, I had a core biopsy - I’m pretty sure not a skin punch biopsy. I had a breast MRI, CT scans, a nuclear bone scan, and I think that was all the original tests. It does say on one of the scan results that there is malignancy suspicious of inflammatory breast cancer. I have to double check which scan result showed this - but I think it was the breast MRI?

I was pretty opposed to chemotherapy initially and my MO I think chose the hormonal treatment route based on my biopsy and that the cancer showed a high ER and PR positive reading.

I am stable now and the hormonales and Ibrance are working. Thank goodness! You are probably right about that it isn’t IBC but had an appearance of it. I am still waiting to hear back from my MO. Hopefully tomorrow he’ll get back to me!!!

Thank you again!!! Hugs to you!

Brenra