Did your pathology report say "inflammatory bc?"

[karen raines hunt]

HI,

For those with inflammatory bc..........if you don't mind me asking...... did your pathology report state "inflammatory bc" or was "inflammatory bc" diagnosed based on symptoms/signs before surgery?

Thanks for sharing.
Karen

[Kaye]

It was the oncologist--at my first visit--a couple of weeks after my surgery (bilateral mastectomy for what was biopsied--stage II lobular) who said I "may" have IBC. Huh???? "May have"? He then told me he thinks that I have/had it. At the time I was in the 'gray' area of dx. This was 5+ yrs. ago.

The bc was found to be alot more advanced after surgery. In addition to the 2.5 cm lobular b.c. (which had been dismissed by my ob-gyn after I pointed it out to him 9 mos before my dx--because a mammo rept a few weeks earlier stated it was 'normal'), I had high grade dcis with extensive comedo necrosis and a separate tumor in the nipple with dermal lymphatic involvement. I was both ER+, Her2+, and had extensive lympho-vascular invasion. I had 9 of 12 positive lymph nodes not matted together. (However, first CT scan report--done one week after surgery--showed remaining lymph nodes that appeared to be matted together). I also had elevated tumor markers (at time of biopsy). I did not have any treatment after biopsy. I had surgery 3.5 weeks later and did not start chemo until 4 weeks after that. Thus, I went 7.5 weeks before having chemo after my biopsy.

The IBC component -- a nipple that began to change rapidly (sinking into the aereola) 10 days after experiencing a severe burning pain in that breast. I had 2nd opinions after suggestion of first surgeon-- 3 of 'em. Both private surgeons, including top rated surgeon at the time for bc in SoCal--also missed the aggressiveness of tumor in nipple. The only one who thought it was not related to primary tumor was surgeon through our hmo. However, I didn't go w/him because he wasn't in favor of bilateral at the time.

In addition to path. report not mentioning IBC, I was also understaged. Apparently, only the 2.5 cm lobular tumor in the breast which had 'clear' margins (even if under recommended amt. on one side) was given stage IIb. However, the staging did not include the high grade dcis or the separate tumor in the nipple. I never quite understood that. At time of dx, I knew very little about bc or any cancer for that matter. It wasn't until after radiation that I knew more or enough to ask my onc--that if I had IBC wouldn't that make stage more than stage II. He then started writing stage3 III on my charts. The 2nd opinion onc we later saw at UCLA told us that the stage didn't matter, what mattered was the treatment. He then went on to tell us that he didn't disagree with the treatment I was getting but wouldn't have necessarily given the same. However, since treatment had already started he would NOT tell us what he would have used. He was thrilled, though, that I was being allowed Herceptin (out-of-protocol at the time). However, we are not so sure it was really out-of-protocol based on all that was going on.

[Margerie]

I have always wondered if I might have had IBC also. I was diagnosed IDC Stage IIB/IIIA because I had 2 IDC tumors in the left breast- one 1.5 mm and one 0.7 mm. There was also a focus of 8mm IDC in the skin superior to the tumor. This tumor appeared to be in the lymphatic spaces, but did not extend to the epidermis. The path report also describes the IDC tumors "approxiamately 50% of the tumor is in situ with a comedo pattern displaying high grade nuclear atypia."

This all makes me suspicious along with my inital complaint of a tender thickening of the breast and some nipple burning. But there was documantation of "no involvement of nipple, areola or dermal lymphatics."

When specifically asked, my surgeon said it was not IBC. I did not ask oncologist. Path report says IDC and DCIS with cells arranged in strands and solid nests with less than 10% luminal differentiation. I guess it is all semantics- I went full blast with treatment.

I have been searching articles on the specifications for IBC diagnosis. Looks like there are still some discerpancies. I have read before that a tumor emboli in the dermal lymphatics does not warrant a higher stage in the absence of clinical symptoms of IBC (peau d' orange, edema over 1/2 breast, skin thickening, etc.) But some articles say any dermal invaion should be considered inflammatory.

The best I could find today:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=14735481

[Kaye]

I was told that mine was considered IBC because of the dermal lymphatic involvement.

[Sandy H]

Mine is on all my reports, pathology, consults, etc. I was told that IBC is always staged at 3b and if it is in the bone or organs then it is stage 4. Some are calling IDC as IBC and its not the same. One can start out with IDC and then end up with IBC later. hugs, Sandy

[Lindalou]

Dear Sandy: The same happened to me. Pathology report said IDC and was later changed to IBC - but once I had my mastectomy and the breast went to pathology it came back that the skin on my chest was not effected by cancer that I am not back to IDC. What do you make of this? Lindalou

[lexigirl]

My original diagnosis was IDC stage IIIA. I had a small pimple that actually spread to a rash about the size of a nickel after my mast. My dosca thought it was from the tape used after surgery. I insisted on a skin biopsy as I had read about ulcerated cancer in Dr Love's book. It came back positive for dermal involvement. I rechecked my path report and it didn't sate anywhere that there was dermal involvement. I guess it hadn't spread that far yet.

Lexi

[Sandy H]

It is my understanding that one does not have to have IBC to have skin mets or skin involvement. I have met those in my oncology who were not IBC and they were being treated for skin mets. I hope this helps. Again, keep in mind IBC is always staged at 3b and if it has spread to bone or organ it is stage 4. It may start our of IDC and following surgery changes to IBC. hugs, Sandy

[simimom]

My path report indicated IBC. I found the "tumor" myself, went to my PCP. He didn't feel anything; mamo didn't find anything. In fact, their report said everything was normal. I went back to my primary care dr. and he finally sent me to a surgeon. Had biopsy, came back IBC. Started with chemo -- Herceptin, taxol and carbo -- 8x; then MRM (left) and then 35 days of radiation. After mastectomy my path report came back negative for any sign of cancer in the breast tissue and lymph notes. It's because of Herceptin!! I had all the classic symptoms -- swollen, red, warm breast, and pain from armpit to nipple. Since I was born was inverted nipples, that symptom may or may not have been present. I was dx in Jan. 05. My reconstructive surgery is scheduled for this Dec. I am very fortunate that my surgeon recognized it at once and treatment was started right away. I am also extremely fortunate that herception was there when I needed it!!!!

[vickie h]

My reports all said IBC, pathology, core biopsies, Oncs report, etc,.I was on a UCLA study and got Herceptin from the beginning, I was stage 3b/4 because of skin mets. After I went off the study (a new tumour
emerged above the scar line from my left MRM in 6 weeks) and then I was definitely a stage 4 so I could continue Herceptin. My Onc said IBC is the misdiagnosed breast cancer, It speads like wildfire and mamos done as little as 1 or 2 months before can show nothing, especially if it is diffused. I had an itchy breast, sweeling, warmth at site. My primary care doc put me on antibiotics for a breast infection...that went on for a month until I was hospalized with pneumonia and insisted on a CAT scan which showed my lymph nodes light up. I don't know how much longer that could have gone on (at the hospital, they also said it was a breast infection and were treating it with warm compresses) I had to insist on that CAT scan that probably saved my life. I had a 7-9cm tumour and 6 of 19 lymphs removed were positive at surgery. I was NED, clean margins, etc. But as I said there was a new tumour just weeks later. I have learned to do alot of pro active work on my own and suggest that everyone get 2 or more opinions everytime they star chemo or their chemo is being changed. It can make a huge difference. Love, Vickie