Question mark over IBC diagnosis?

phet7178

Hi all,

I post this in the IDC forum but so far no love so I though Id try here! I was diagnosed with IDC three months ago - ER 8/8, PR 8/8, Her2-, and scans (US, Mammogram, MRI and CT) suggest no lymph spread and histology says no LVI. We found the cancer after I noticed a pink rash and mild swelling on my breast. These are hallmarks of inflammatory breast cancer, and that's what they thought I had at first. But then they did a punch biopsy on my skin, which had no cancer in it, so the diagnosis was changed to non-inflammatory. I also lacked a few of the extra signs of inflammatory cancer (orange peel skin, redness covering 1/3 of breast, high chance of lymphatic spread etc).

My oncologist and surgeon can't explain to me why, with non-inflammatory BC, I nonetheless had redness and swelling (which, incidentally, I still have after 3 cycles of neoadjuvant EC). They don't seem too worried about it and said 'well, 90% sure it's not inflammatory so don't worry.' But I do! Inflammatory, as you know, requires different treatment and has a different prognosis...

So my question is: have any of you heard of similar cases or know if any extra tests I should push my onc to do? I think my tumor is quite close to the skin surface, and my only guess is that by 'pushing up' the flesh above it, it has irritated and inflamed the skin above (causing the swelling and pink color). But I can't find examples of other people who have reacted this way...any thoughts much appreciated

LoriCA

Hi phet7178. I have read some posts here about breast tumors sometimes causing irritation without it being IBC. Skin infiltration is the primary indicator of IBC because it starts by blocking the dermal lymphatic system and grows in sheets, not a mass. Primary IBC typically doesn't have a mass/tumor (although secondary IBC often does), so a skin punch biopsy is the only way to confirm an IBC diagnosis because there is no tumor mass to biopsy like there is with other types of BC. Since you have a tumor mass (that I assume was biopsied) and they haven't found any skin/dermal lymphatic infiltration along with several other key symptoms missing, I can understand why they would decide that it's not IBC. Of course it is possible that the punch biopsy missed it, especially if they did only one. At my original Dx they did three punch biopsies, all of which showed tumor emboli consistent with IBC. As to additional tests, only additional skin punch biopsies to confirm the presence in the dermal lymphatics. Sometimes an MRI will show the thickened skin that also accompanies IBC. But if it didn't continue to rapidly spread across your breast before you started treatment, I'd be inclined to trust their judgement.

It sounds like they started you on chemo first, which is what they would do with IBC anyway, so that's a good thing. I wish you all the best with treatment.

Newfromny

I was diagnosed with clinical IBC the punch biopsy came back negative but there were other symptoms and the treatment was the same chemo, surgery, radiation. I did have a complete response to chemo but the breast was still slightly pink so they decided on mastectomy and am now undergoing radiation .

mammalou

I found my cancer because my breast turned red also. I had skin thickening on mammogram and MRI. An MRI found my 3.6 cm IDC tumor and the fist punch biopsy was negative. I had bad margins so they went back in and also did another skin biopsy. That biopsy came back with dermal lymphatic cancer. They still weren’t sure if they should call it IBC. In the end they treated me as if I was IBC except for the Taxol. That deviation from the standard treatment haunted me for a long while. Now, 8 yeas out, I feel a little better about it all.

phet7178

Thanks everyone for your replies! Mammalou, it sounds like I have a bit of a similar situation to you, only they can't now do another definitive punch biopsy as I'm halfway through neoadjuvant chemo and any cancer in the skin may have been blasted already. I really wish they had done more than one to start with! It does sound like I'm being treated with the IBC protocol anyway, at least as regards the neoadjuvant chemo. I've also already decided to have a mastectomy and will try to get them to do a modified radical (although I may not have cancer in nodes so they might be reluctant). And I've also already confirmed that no matter what I'll get radiation, including to internal mammary nodes (my tumor is in the upper left quadrant). Then I just pray I guess! LoriCA, that's very interesting what you say about the IBC growing in sheets and only 25% or so having a tumour/mass. Do you know if LVI in the original biopsy is also more common in IBC? NewfromNY, your situation also sounds very similar to mine, maybe I'll just check with my team that they are treating it as 'clinical IBC' albeit the punch biopsy came back negative. Thanks all!

LoriCA

phet7178, yes with IBC the main difference in a biopsy is the higher prevalence of LVI and nests of tumor cells in the skin (dermal tumor emboli). My pathology report mentioned the sheet-like appearance too. The pathology report won't say IBC because that is a clinical diagnosis based on the symptoms and usually confirmed by the biopsy. IBC is usually IDC and that's what would be shown on the pathology report. A pathology report of IDC doesn't mean you don't have IBC.

Even with IBC the aggressiveness varies so there are a couple other things you want to look at on your pathology report. A Grade 2 triple positive it is likely to be more indolent, Grade 3 with a high Ki67 is going to be more aggressive. Every time we've biopsied mine has been Luminal B Grade 3 with a super-high Ki67 (60-70s every time) and when they (mistakenly) did an OncotypeDX my score was 93, so I have an extremely aggressive version that is stubborn and resistant to just about everything. But my experience has been an exception to the success most seem to have these days.

Trimodal treatment beginning with chemo is standard of care for IBC, and it sounds like your treatment is right in line with that.