Her 2+ with dermal lymphatics invasion

Jbh_9904

I was diagnosed in Feb 2019 with IDC. I had a 4.6cm mass and breast slightly larger than the other which has always been a little larger. Since I had lymph nodes involved they started me on TCHP March 5 2019 and after the first round my skin broke out, face neck, back and a red rash came about over the area of the tumor/mass. I called oncologist a d she had me come in to look at my skin. She gave me a topical cream and never thought twice about the rash. In April I met my breast surgeon who also saw the rash and asked if oncologist knew about it. Which I told her she did. The rash never bothered me, no itching or pain it was just there. After 6 rounds TCHP I was set to go on to surgery for bil nipple sparing mastectomy and axillary lymph node dissection. During the surgery the surgeon said she was going to take a biopsy of the skin rash. The biopsy came back with cancer in the dermal lymphatics. She did not perform the nipple sparing mastectomy but went ahead with axillary node dissection. As you would expect I woke up from surgery Furious that this rash had not been tested sooner. So back to the oncologist they now have started me on AC x 4 weeks to see if the rash would clear. Anyone have any similar experiences? They are treating me as if it's IBC. I feel like I'm starting all over again. 🙁

Flo80

Hi There . I think the oncologist should have done a punch biopsy earlier to see if there is cancer in the breast skin or not. Also please ask them for MRI as well. Ibc needs to be treated differently and it’s always chemo first and then surgery that too comeplete mastectomy non skin sparing and then radiation. Cancer in the breast skin does confirm IBC I believe. For me they just took one biopsy and that did not have cancer but they treated me with IBC protocol and I think it’s good.

Please get a second opinion with an IBC specialist. And for me they are doing 4 dense AC and 4 dense Taxol. Also please post this in the ibc lounge as well as there are people who know more about IB

LoriCA

I can understand how upset that would make you, but I'm not surprised that they didn't initially test the rash for a couple reasons - first, an IBC "rash" would not suddenly appear on your face, neck, and back all at the same time. It would start on the breast, and if it is resistant to treatment it spreads out through the skin from there, you can actually see it spread. Mine is resistant and spreads super fast, have gone through two rounds of it spreading out of control so far, but it always radiates out to my other breast, toward my back and down my abdomen. Your description sounds exactly like a Herceptin rash, which many of us get, and that's probably what they figured it was since it suddenly appeared on your face and back after your first infusion. I get a mild case of it on my face and upper arms.

Sounds like you got hit with worse case scenario - a Herceptin rash at the same time you developed secondary IBC, which delayed your diagnosis. I'm really sorry to hear that jbh, if this next round of chemo doesn't clear it up, you might have good success with rads. With IBC they often give a much higher dose of rads than they do for other breast cancers to try to overcome resistance.

Missmom79

sorry I know you guys are talking about a different t topic, well kind of. Anyways Leslie asked if my oath report said it had any dermal lymphatic involmemt and I said I hadn’t for the path report yet. Well, I for it today from the dr that pit me on a higher dosage of Xanax and she printed dot out for me. I do not know why it’s so short? Is that normal. This is what it says as follows

Right breast at 2:00, core biopsy.

-high-grade solid DCIS with central necrosis

-tumor cells are negative for ER(0%) and PR (0%)

-microcalcification is present in nonneoplastic tissue

MICROSCOPIC DESCRIPTION

Immunostaining for smooth muscle myosin heavy chain and p63 highlights myoepithelial cells surrounding DCIS

GROSS DISCRIPTION

CIT:5 min

FFT:10 1/2 hours

Immunohistochemical staining for ER,PR, Her/neu and Ki-67 is performed on tissue in 10% neutral buffered formalin using computer- asssited technology. Ventana automated slide stainer and antibodies are used. Antibody clones are monoclonal and detection is ultraview. Percentage of tumor cells exhibiting nuclear staining for ER and PR,or complete membrane staining for Her2/neu is determined by ventana virtuosos. Scoring for ER and PR utilize the percent of positivity stained nucleii with greater than or equal to 1% considered positive. Tumors with Her2/neu 2+ results are sent to a reference laboratory for Her2 FISH analysis.

LoriCA

Yes missmom, they don't always give you the complete multi page report with all of the photos since that part is really only relevant to medical personnel. You have a summary page. The only thing you are still waiting for is your HER2 status, Looks like your test may have come in as HER2 neutral/equivocal with the IHC test and it was sent to an outside lab for FISH testing, which is how HER2-neu should be handled. . HER2 status may play a role in your treatment options (targeted therapy), although since DCIS is usually only treated with surgery and sometimes rads, it likely won't matter in your case. If your FISH test also comes back HER2-negative, you are Triple Negative, which is aggressive. I'm sure there are other TNs in the DCIS forum that can give you info on how it is treated.

It's impossible to have DCIS and IBC at the same time. IBC does not start in the milk ducts, and if you had IBC it would mean that the cancer cells had escaped and were no longer "in situ", at which point it would no longer be DCIS (the IS stands for in situ).

LoriCA

Let me clarify my statement that it's impossible. It could remotely be possible if you had BOTH DCIS and IDC. You can't have DCIS and IBC, without also having IDC. DCIS and IBC start in two completely different locations of the breast.

Missmom79

well I just didn’t understand the path report. So you’re saying I can’t have all three? Idc,DCIS and IBC correct? IBC is a subtype if IDC. So I guess I’ll go to the forum for that but what would explain the IBC symtoms. Which had been a month now and has completely stayed the same.

Leslie2010

Missmom79: we are trying to help based on our experiences, but please understand as stated before, only medical doctors can give you diagnosis of your cancer status. I got confused a little, sorry, the mammo place can’t provide any dermal lymphatic status based on core biopsy. Now the mammo place confirmed you have DCIS, not sure about inflammatory and send you to a surgeon, which is standard procedure. I will urge you to ask the surgeon about the pink area on your breast and how he/she can assure you it’s not IBC. Hang in there!

blue22

Missmom has there been any mention of a punch biopsy or an MRI? For me the MRI showed skin thickening, which suggested IBC, and the punch biopsy confirmed that.

DCIS and IBC are very different. I had IBC in my left breast, and DCIS in my right. IBC meant I had chemo, followed by a mastectomy with lymph node dissection and radiation. DCIS only required a lumpectomy and possibly radiation (TBD).

sbelizabeth

When a small lump was discovered in my breast, all attention was then focused on the lump, and the red skin and peau d'orange were ignored. After a lumpectomy and sentinal node biopsy that revealed a lot of involved nodes, I saw my oncologist for the first time. She ordered a biopsy of the skin. Well, look at that...the skin was full of cancer. This changed my treatment protocol considerably. Had someone thought to biopsy the skin in the first place the lumpectomy wouldn't have been done; I would have headed to chemo immediately.

Missmom, I would urge you to insist on a skin punch biopsy--maybe of several areas within the redness--to discover why you've been diagnosed with DCIS and the skin of that breast is red.

Missmom79

no she did not mention a lunch biopsy. I see a surgeon in buffalo on the 23 of this month. The mammo showed skin thickening but I have a bunch going on in there I guess. I understand the cire biopsy would only show what’s inside and what’s no outside of the breast. But IBC is a subtype of IDC which the core biopsy says I do not have IDC. Now I’ve told it’s not possible for IBC to derive from DCIS

sbelizabeth

That's correct, Missmom. DCIS, by itself, isn't invasive. It develops in the ducts of the breast and has NOT broken out of the duct. If DCIS is your only issue, then you don't have invasive cancer. The redness is due to something else.

That being said, it's possible that there's the DCIS that was biopsied and diagnosed, and then SOMETHING ELSE malignant going on your breast that they haven't diagnosed or seen. I don't want to scare you. But after my own experience, if it were my own DCIS diagnosis and I had redness and skin thickening, I would demand they get to the bottom of the redness and skin thickening. DCIS, by itself, can't cause that.

Missmom79

I had an mri today. He is trying to figure out what and Where it is so if it is invasive then it can be treated. It’s been 5 weeks since the symptoms. I’m so worried about it spreading. Yes the dr did tell me dcis will not cause that by itself. Now after the mri I don’t get to see him until September 3rd. But his nurse stays he is going on vacation but doesn’t really go on vacation. If something arises he gets to it. And his nurses,s said he checks on his patients by calling them individually and asking them how there feeling.