HER2 Support Group Forums - View Single Post - Did your pathology report say "inflammatory bc?"

Kaye · 10-23-2006, 07:47 AM

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.

10-23-2006, 07:47 AM	#2
Kaye Senior Member Join Date: May 2006 Posts: 52	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.