Oncologist and Surgeon disagree about inflammatory diagnosis

LovesLoons

Sorry if this is long, but I might not get back to check to answer questions so trying to get all the details in here.

I saw the oncologist and his fellow a week after my first biopsy. Before this, I was found to have a 5 x 2 x 7 (my mammogram/ultrasound) mass that came back on biopsy IDC to lymph nodes. It grew really fast and is grade 3. When I saw the oncologist, I asked him specifically if he thought it could be inflammatory because since the biopsy a week before that, I had redness on my whole breast, pretty much in the area of the tumor (which again, is now my whole breast).

The oncologist fellow put in his note he was not sure if it was inflammatory. The "head cheese" oncologist put in his note he did not believe it was inflammatory breast cancer, but rather that there were inflammatory changes because of the tumor. I'm not sure what the difference really is.

Breast MRI re-measured it at 10 x 7 x 3 I believe. The redness might have been there before, in September, but it would have been barely noticeable. It was not like it is now at ALL.

So then 2 weeks after the first biopsy I had a second biopsy (for research/study reasons). The redness is still there as before after that one, maybe a bit darker.

So I saw the surgeon yesterday, (almost 4 weeks after my appointment with Ob-GYN where there was no redness like this), and she says she is diagnosing me with inflammatory breast cancer.

I didn't think you usually have a mass with that, but from what I am understanding now (if I'm right) it's that the tumor is growing and went to the skin/lymphatics so much it is pretty much blocking them.

It doesn't change my treatment plan with the oncologist, but I think it changed the surgeon's plan in that she wants to do radiation and not immediate reconstruction.

Does this sound like this is the way an IBC can progress? Is it possible i never would have had "IBC" if we would have gotten to chemo before it spread there? Or was this always IBC and it only showed up in the skin as redness/swelling recently?

Yesterday I went to meet with the surgeon (just a consult).

cross_fingers

Hi - I wish I had an answer to this, but I do not. I'm very curious what others will say, as my situation was similar (except my very palpable, fast growing IDC tumor was triple positive). I didn't have redness, but had "inflammatory features" per my oncologist's charting, such as swelling peau de orange. I had a skin biopsy of the affected breast which was positive. My breast surgeon said I didn't have IBC -- just a large tumor that was growing close to the skin, but my second opinion oncologist said it could be IBC. It's probably not relevant now, since I've undergone neoadjuvant chemo, mastectomy, radiation, and will be starting anti-hormonals soon, but I'm still confused on what constitutes an IBC diagnosis and what does not. I did get tissue expanders when I got my mastectomy, so I started the reconstruction process (radiation occurred with the expanders in).

Best of luck to you LovesLoons.

Lucy55

I don't have any answers for you either ..but please know we are all here to support you .These early days are the worse ..((Hugs ))

wrenn

Are those measurements cm or mm? So sorry either way. No easy way to take all this in. Be good to yourself. I hope you get some definite answers. Not having a clear idea makes anxiety worse I think.

LovesLoons

Thanks everyone Since it's not going to be much of a change, I'm not to worried about which one it is technically. I just wanted to understand the process and why there could be a disagreement there between the oncologist and the surgeon.

The measurements are cm by breast MRI last week. Yep. It's a doozy.

wrenn

Yeah, that's big. :-(

I found out long after diagnosis that subtype can make a difference. Metaplastic doesn't respond well to chemo but Apocrine does great with chemo. Just thought I would complicate it more for you. :-)

Again, sorry you find yourself here but hope you will take advantage of all of the great supportive women here. Take care.

LovesLoons

Thanks wrenn. How can they tell the subtype of triple negative?

wrenn

Mine was on my pathology report so you will have to wait until after surgery. My sister in law's sister's apocrine was on her path report as well. I probably shouldn't have brought it up because you have enough information to deal with and it doesn't really matter yet. I over think these things when I see a new triple neg. Try to just focus on day to day and doing what you have to to relax.

sbelizabeth

Lovesloons, sorry if I'm telling you stuff you already know, but here goes.

"Triple negative" means your tumor does not have receptors for estrogen or progesterone, and is not HER-2 positive. So you won't receive any anti-estrogen medicine such as Tamoxifen or Arimidex. You may have heard of the drug "herceptin," which is used to treat HER-2 positive tumors. You won't get that either.

You're right--"inflammatory" breast cancer refers to the effect of the skin when breast cancer cells, called "emboli," clog up the lymph channels in the skin. For inflammatory BC to be officially diagnosed, the skin effects (redness, orange-peel dimpling, ridging, swelling) must cover at least 1/3 of the breast. However, there are some tumors that are very close to the skin and can lead to "umbrellas" of skin patches with tumor emboli.

This was my situation. I had a 3-4 inch spot of peau-d-orange, reddened skin, under which was a 1.2 cm tumor. It had spread to lymph nodes, even with such a small tumor. But look at my signature line--that was five years ago. I did the chemo, mastectomy, rads, recon, and it's all behind me.

My surgeon called it inflammatory BC. My oncologist called it IDC with inflammatory features. I asked my onc about the difference and she said, "it's just semantics." My treatment was the same--they threw the kitchen sink at it.

Gentle hugs as you make your way through this fandango!

LovesLoons

Wrenn-- Thanks! I had already been reading some research on the subtypes, and I was just curious if it would be on my pathology they are doing for the study. They are doing a Mammaprint and ... shoot. Something I can't remember, but I think it was just a redo of the hormones/Her2, --- I'm not entirely sure they'll say the subtype or not. I actually LIKE information. So you can't possibly overload me.

sbelizabeth- That explains it really well--thank you! That info is really not out there anywhere so I couldn't understand how they would say it is completely different from IDC yet not different. 0__0