Could I have IBC along with IDC

Hello Becky, My first symptom was redness on my right breast, there was no palpable mass.  When I had my mammo there was a mass, and even though we knew right where it was, still could not feel it.  I had an US and biopsy the same day.  The pathology on the mass was IDC, grade 3, triple +.  The skin punch biopsy was positive for IBC.  YES it is possible to have both, and IS pretty common.  Feel free to PM me if you would like.  Have you looked into getting a second opinion from another onc?  Feel free to read my story at:  www.caringbridge.org/visit/jessicam

Much Love!!  Jessica

IBC is a clinical diagnosis or a diagnosis based on a punch biopsy of the skin.  A core biopsy will be read as either IDC or ILC or a combination of both.  I recommend getting a second opinion at a comprehensive cancer center.  Where do you live?

As Lori said, IBC is primarily a clinical, rather than pathological, diagnosis, meaning that the physical symptoms are used for the diagnosis, rather than pathology (cancer cells found).  This is directly from the horse's mouth at the Morgan Welch IBC Clinic at MD Anderson.  Even a skin punch biopsy will sometimes not show cancer, but if other symptoms are present - inflammation, peau d'orange, skin thickening (seen on scans), partially or completely inverted nipple - IBC should be the diagnosis.  And it is entirely plausible to have IBC as well as other kinds.  My wife was diagnosed with IBC, IDC, and DCSIS all in the same breast!

Becky,

I was diagnosed through punch biopsy with IBC & IDC, 3 cysts & 1 tumor 3.5 cm 6/09.  I went through 8 chemos & on hormone therapy now with Femara.  I had a difficult time as well with the inflammation that treatment did not handle.  I found an inflammation product from a health company called  Trivita; product is  Nopalea--it's cactus juice with many other juices.  I started taking this after chemo because I did not want to interfere with the chemo I was under.  It worked really well at diminishing the inflammation & redness.

IBC is serious and aggressive--this juice helped with symptoms--not a cure---make sure you see an oncologist or breast cancer surgeon willing to do the biopsy.  IBC is often confused with an infection.

Terri

I forgot to say that the chemo I had before surgery totally changed my breast until it looked almost normal so I feel the chemo was very helpful in ridding my body of some of the cancer prior to surgery. Good luck to all. You've got to fight in order to win!! 

Hi Linda--just saw your post and question....its interesting that 2 specialists noted the peau d'orange.  I haven't heard it linked with anything other than IBC.  Why not call your oncologist and ask about it?  That would settle your mind as to why it was written like that?  Do you go for frequent check ups?  Do not delay in expressing your concerns/fears to your oncologist--let the Dr look at it and put your mind at ease.

Hugs and Blessings

Carole 

Hi Bonnie and Carole,

Well I saw the Dr the other day at the cancer clinic and she said she was very certain I did not have IBC and that it would have shown in my pathology report if there was IBC as well as IDC.  She is certain that my breast became red after my lumpectomy and a bit swollen and peau d'orange looking as a result of my surgery and that it will go away.  I notice that the redness is starting to fade (which is odd because I am half way through radiation and you'd think I would be more red not less...?).  I also took a few pictures today of my breast so I can start to track changes better.  I can see clearly the peau d'orange now...it is sort of on the underside of my breast and so it wasn't that clear to me before.  It wasn't there before the lumpectomy though.  The itchy part has also stopped now as well.  I'm having no pain to speak of.  I am having a lot of trouble sleeping and my hips are starting to ache like crazy when I sleep...driving me nuts and don't know why that is starting all of a sudden.  I feel like I've turned into a complete different person in 5 months.  I used to be carefree and fun...and now seem to be full of concern and pain.  LOL.  I really don't want to become one of those people who define themselves by their health or lack of it if you know what I mean.  This really is a good place to vent though.

By the way...is anyone interested in seeing my pictures?  I will send them to you by private email if you are interested...I know we're not doctors but I figure we know quite a bit about this stuff and sometimes we can really help each other.  Thanks.

Hi Billiegirl.  Thank you for your comments.  My redness did not start until AFTER my lumpectomy.  The peau d'orange and the redness/swelling all started afterwards.  When I started my radiation, my breast was already quite red.  I'm half way through the radiation and it's not much redder...but still red.  The radiologist Dr said she "didn't like it"...and would "keep her eye on it"  whatever that means.  I don't have much pain to speak of...and no itch.  There is some lumpiness (I was told that was from internal bleeding) around the nipple where the peau d'orange is.  I see my oncologist on Monday and I'm going to ask him point blank if there is ANY possibility that I could have IBC.  I know it didn't show in the pathology report...and that prior to the surgery I had no symptoms of IBC at all...but still...it does seem strange to me to have the symptoms of IBC and nobody but me seems to be that concerned.  I'm thinking I should probably have a mx if I've got IBC.  Just wish I knew what was going on I guess.  Ok, thanks for the vent.

I'm bumping this old thread because I, like Linda, am having IBC-like symptoms after lumpectomy.

I first noticed redness over 90% of my lumpectomy breast about 6 days ago. I am a chemo patient at the moment due to my triple-negative status, and I wondered at first if my low white blood counts were allowing an infection to take off from something (internal stiches maybe?) related to the surgery.

At times the skin around my auerola looks like orange peel, but it is sometimes less pronounced. No pain or itching, no streaks, no oozing or fever. My breast really resembles some of the photos of IBC I've seen on Google.

I've been in phone contact with my oncologist since last Friday over this, and am seeing her tomorrow. I hope I get some answers as I am already freaked out enough about being triple negative.

Wow.  This is interesting.

I had a lumpectomy on 8/26/10.  On Sept. 9/16 I went to see the rad. onco and he didn't like the redness above my nipple on same side of my lumpectomy.  I had SNB on the left too.  7 nodes all clear.  They called and had me see my BS who didn't think it was an infection but she aspirated 120 ccs fluid out of the breast.  On 9/15 I had a regular follow up with the BS and the redness was still on top of the left breast nipple.  She aspirated another 65 ccs from the breast this time.  On 9/17 I had my port put on and she aspirated 40 ccs again.  On 9/22 I saw the BS agan and she aspirated 35ccs and thought "that would be it."  The redness on top of my nipple went away.  But...on that last visit we both noticed a small "white head" appeared to the left of the nipple on my left breast. 

Since the appearance of that white head I had itching.  Now I have pink coloring on my left breast from mid nipple over and ends just under my breast.  I pulled up the breast to have a good look on the underside and noticed dimpling.  It is warmer to touch than the right breast.

In the past 3 days I have worried that this is IBC.  But...I had an MRI (8/19) and PET (8/17) which did not show any evidence of this. 

The area is slightly sore and sometime itchy.  Not that any of us are doctors...but what do you think?  Would IBC show up on a PET?  I started chemo (AC) yesterday and go in for fluids today.  I am going to ask the nurse practioner to look ... gosh...hope I am not turning into one of those people that think everything is a complication or recurrence.  

Someone in an earlier post said that a pathology report would not say IBC, only IDC since IBC is a clinical diagnosis.  That is true that it is a clinical diagnosis, but your pathology report can also confirm IBC.  Mine did.

Terri,

Your diagnosis sounds very similar to mine.  I have two idc tumors and axillary lymph node involvement along with the swelling, redness, orange skin like dimples, warm skin, nipple inversion and skin thickening with a couple of mets.  So, yes, it is VERY possible to have a diagnosis of IDC and IBC.

If it weren't for the symptoms of the IBC I may have gone longer before getting the diagnosis of the IDC because I have had a history of fibrocystic breast disorder and I didn't truly become concerned with the lumps until the external breast changes occured.  The lumps I had were painful and similar to what I had experienced in the past with the fibroids and at 33 years old and having breast fed, cancer was not my first conclusion or concern.

Best wishes to you all in your continued fight!

Holly