IBC clinical diagnosis

Annie2012

My oncologist says I have IBC by my symptoms, although it is not confimed by pathology. Did many of you have the confimation of IBC by your pathology?  It was very agressive and got to 9CM in 6 weeks.  My breast was red, swollen and warm to the touch.

ibcmets

Annie,

Mine was confirmed by pathology and referenced on ultrasounds due to the skin thickening.  I had same symptoms as yours and itching.

Terri

Annie2012

Terri

I found a lump early last Sept and after having a biopsy done, was confirmed I had DCIS cancer. Shortly after my breast became red and inflammed....I thought it was infected from digging around and doing the biopsy, although the redness was on the opposide side of the breast. They put me on antibiotics and nothing helped. I had a punch biopsy done of the red area that came back fine. I knew something was wrong, so I transfered my care to a larger cancer center 75 miles away and have been doing my treatment there since October 17th.  Had another biopsy and they told me it was a very aggresive cancer.  My biopsy said invasive ductal carcinoma grade 2. I have just finished 5 months of A/C chemo and Taxol chemo. My tumor has shrunk so much you can hardly feel it after being 9 CM. My oncologist said IBC is not always confimed with the pathology, only her clinical diagnosis. I have surgery on April 3rd. I have to wait for my counts to come up first.  Then I will have radiaton after the double mastectomy when I have healed from that. I am triple negative and Brac 1 positive also.

Kicks

All my Drs said that Inflammatory Breast Cancer can only be cinfirmed by a biopsy/pathology report.

I saw my PA a  week after I found a very enlarged lymph node under arm (she was away on vacation) and she told me that she was 'sure' it was IBC but we had to confirm it with path.  That was at 1100hrs - I was at radiology for a new mammo (last was 2 mths before) at 1300hrs and left there at 1500hrs after a neew mammo, sonogram and biopsy.  Radiologist said he was sure it was IBC but until the path was in he could not say absolutely.  He called me the next morn at 0800hrs with the pah report - IBC.

'Symptoms do not confirm anything in most cases!  I would reaally have a problem with doing anything as aggressive as Chemo and Rads without PROOF it was appropriate.   Just the way I feel. 

KarynK

Hello all -

I just had a skin biopsy yesterday.  My symptoms have been around for a month but have not been as agressive as what I have seen here.  The pink/redness has been there the whole time with various degrees of color but the stabbing pain just started on Saturday.  Oh and I did 10 days on antibiotics with no change for the good only saw color expand a bit and pain start.

I am wondering how common it is to have a skin biopsy come back negitive but it really is IBC?

Any thoughts?

Thanks
Karyn

Annie2012

I am not sure what to think.  I dug out my pathology report yesterday from my biopsy before starting chemo back in October and it says invasive ductal carcinoma, Nottingham grade 2 indeterminant for lymphovascular invasion.  I know the chemo before the double mastectomy would be the treatment if I had IBC or even if I have a large tumor of IDC. So I pray I did the right thing by listening to my oncologist and having the chemo done before the surgery to shrink down the large tumor. Reading through the symptoms in this website, as far as the redness goes and swelling they could be symptoms of either kind if cancer. Since I am triple negative, that would explain the aggressiveness of the tumor. Since this oncologist is my 2nd opinion, at a large cancer center, do I go for a 3rd opinion before surgery April 3rd? I will have the surgery anyway since I am Brac1 positive. She insists it is IBC, even if my pathology says IDC. I have been reading your posts for some time and you are all wonderful, giving so much advice and comfort out there in this struggle we have to go through.  I joined yesterday so I could thank you all so much and may God always give you strength and peace through this journey.

ibcmets

Annie,

You have taken the right steps.  Chemo is always b/4 surgery with ibc.  I also had a 3.5cm invasive ductal carcinoma tumor along with the ibc.  I'm glad your treatment is working.  I had the same chemo.  Check the surgery boards here for any info you may need.

Terri

Sjesse12345

Annie, I also had a 5cm IDC tumor, this is actually what I found in the shower one night (10.5 months after a clean mammo), got in to my GP 2 days later, sent for a mammo and US and they did a biopsy there.  Came back as IDC, went to the Breast Surgeon the next week, he said chemo before surgery to shrink tumor and maybe we can do a lumpectomy.  Had my meeting with the Onc the following week, during that week my breast turned red, some peau d'orange and nipple inverted.  Onc made a clinical diagnosis of IBC based on those symptoms and I started chemo a few days later.  So my treatment would have been the same up till now (still going through chemo).  I asked her after my first chemo about being sure about it being IBC, she said she is sure and if we had done a biopsy we could have done a few and still gotten a negative result.  Of course I'm still hoping that at surgery we find out it isn't but I have a strong feeling it is.  Based on that though we are doing the aggressive chemo so I am comfortable with that part.

If I understand correctly you had an over 9cm IDC triple negative tumor?  If that is correct I believe you would still have done aggressive chemo before surgery, that seems to be the norm now from what I understand.

Annie2012

Terri

Thanks for your response! Your pathology confirmed IDC and IBC. Were these biopsys done at different times, and if so how many days, weeks apart? I guess I am basically just trying to be sure of my diagnosis. When I have surgery will they be able to tell if I truly have IBC with that pathology or maybe not after having the chemo? I had decided against the reconstruction if I have the inflammatory, but if I only have the IDC, I would think a little more about doing it. I wonder if many out there have been diagnosed with both IDC and IBC??

Annie2012

Sjessie, You sound alot like me! I went in with a lump I found first, then after doing the biopsy, several days later all of a sudden my breast got red, swollen and warm....like the biopsy stirred things up and all now I have symptoms of IBC. I also found the lump 2 months before my next mammogram was due. I guess either way if I have IBC, IDC or both I believe the chemo is the same, to have before the surgery.  I tend to believe what I see in a pathology report over what a Dr just thinks, but I very well could be wrong.  I see you are triple negative as well, did you have the genitic testing done?

Sjesse12345

Annie, when I read your post I thought exactly the same thing, "that sounds just like my experience".  I have been reading the IBC forum for a while now but not posting, I'm still going through denial I guess, as like you it's just been a clinical diagnosis.  You are right, the pathology after the surgery will tell the true tale, but my Onc has been doing this for over 20 years and although I haven't asked her how many other IBC patients she has had she was pretty sure right out of the gate that my symptoms showed that is what I had.  Either way I get the most aggressive treatment that they offer here so I'm ok with that.  I didn't get the genetic testing done, not sure if it is warranted, I don't have any kids and my only sibling my brother does not either so not sure what that would accomplish at this point.

The IBC and TN scares the crap out of me and I know I'm not alone there.  I have browsed the ibcsupport.org site and on there through doing some searches have found at least 11 ladies on there that are IBC TN and five or more years out.  I read those occasionally when I start down that black hole emotionally, it helps to know that there is hope. 

I am still going through chemo, have at least 3 maybe 5 more to go.

Annie2012

Sjesse,

I'm not sure we will ever know for sure, as I don't know if that will show up in the pathology after having all this chemo.  But I am just guessing on that, maybe they can tell.  My breast surgeon tells me I can have the skin sparing mastectomy because I should only consider myself triple negative, not inflammatory. Then I could have the TE reconstruction done.  My radiologist says the same thing.  I won't have radiation done until after the surgery. (I only met with her to go over treatment plans.) But my oncologist says I have inflammatory and highly advises against it. The funny thing is my oncologist and my breast surgeon are good friends and work very closely together, going over treatment for patients, but they differ on this opinion.  My oncologist only has about 7 yrs experience, she said out of her 200 patients, 6 are inflammatory.  My breast surgeon has at least 20 plus yrs of experience. The only reason you would need to have the Brac testing done is to decide if you want a double mastectomy or not. I have 2 daughters and my mother and sister both had breast cancer, so that is why I was tested.  I totally know what you are saying about IBC and TN...I try to focus on how far they have come with treatment.  Worry won't add an hour to our life. We are both doing all we can, going through the treatments and following what our Dr's are telling us to do.  God Bless!

ibcmets

Annie,

I had all ibc symtoms and by the time I got into my obgyn; I felt a small lump (idc tumor).  She did not think anything of it but sent me for a mammo the following week.  That's when suspcions of ibc & idc tumor were found through mammo & ultrasound.  A few days later, I saw a surgeon & had a biopsy that confirmed everything.

Terri

Sjesse12345

Terri, I'm curious, does the IBC show on any kind of scan?

ibcmets

Siesse,

I had MRI, CT & PET which confirmed cancer, maybe not ibc exactly.

Terri

Annie2012

I am going to be cautious and not do the reconstruction when I have my double mastectomy, as advised by my oncologist. Even though IBC wasn't confirmed in the biopsy and my breast surgeon said I could have it.  I read you need to go with your oncologists opinions, not your breast surgeon.   In case I have the IBC, it is not advised at the time of surgery. Thanks Terri I will read the info on the surgery links. I need to be better informed on what to expect at surgery and after. I read a very good transcript that Bon had posted the link for from the MD Anderson IBC center in Houston. Looks like I am doing everything he says to do with inflammatory breast cancer. On the positive side I finished my chemo on March 5, and after the taxol, my fingers and balls of my feet were really numb, however this morning I noticed they are a little better! My oncologist said it would take months to get better and then maybe won't go away completely.  Did anyone get their feeling back in a few days/weeks?

ibcmets

Annie,

I did chemo for 8 months.  I felt a tingling in my fingertips but never lost any nails.  I did vitamin B6 & B12 during chemo and did not get bad neuropathy.

Terri

IrishWendy

I have IBC, just reading thru the posts in the IBC forumI am seeing acronyms i can't identify with IBC  .Can someone clear a few up for me? IDC is not IBC correct?  I am not sure what TN is..or BMX..Can someone help thanks

Kicks

IDC in not IBC - it is Invasive/Infiltrating Ductal Carcinoma.  It is possible to have both IBC and IDC at the same time but they aren't the same at all.

TN - Triple Negative meaning that 'you' are negative for ER, PR and HER2.

BMX - bilateral (double) mastectomy UMX - unilateral (single) mastectomy.