Mastectomy path report shows "gray area" for IBC ?

DianeMarieWA

A little history - My daughter was diagnosed with multicentric BC at age 33.  She had been having symptoms for three years (!!!) before mentioning them to me.  Being a BC survivor myself and having had a recurrence in 2007, I found this news to be very distressing.  On questioning her, it seems she finally went in because the pain from her breast was radiating to her back.  Her PCP ordered a mammogram.  Because of the symptoms she was describing to me, including an inverted nipple, breast pain and possibly a rash, I was very concerned about the possibility that this was IBC.  Unfortunately, the mammogram showed multicentric BC with the largest tumor measuring 8cm!

My daughter had several tests including an ultrasound, MRI, PET scan and CT scan, and biopsies of the breast and one lymph node under her arm.  All biopsies came back showing BC.  She also tested positive for BRCA2.

Because of the size of the largest tumor, she underwent A/C and taxol chemotherapy first.  She completed that and just last week had a right mastectomy with full axillary dissection.  

The path report showed the large tumor was 8cm x 6.5cm x 3cm.  The surgeon drew a pic of the size on the back of the path report, and it is the size of an orange.  The report showed 3/20 lymph nodes positive for BC.  It also showed diffuse DCIS throughout the breast.  It also showed that the nipple was "affected".  

When asked directly by my daughter if there was any IBC the doctor replied that this was a "gray area", and although her nipple was involved she was going to call that Paget's.  My understanding is that Paget's causes itching and crusting of the nipple, something my daughter didn't really have, although her nipple was inverted.

Okay, here's my question - would the path report have identified IBC if it was there, and if not is there a specific test or process that determines when it is in fact IBC?

Thanks for any light anyone can shed on this.

A concerned Mom,

Diane

ibcspouse

Diane,

The path dx for IBC is generally stated in the Path report as Type of cancer (IDC or ILC) with tumor emboli in dermal lymphatic channels,  but IBC is a clinical DX,  The rule is if the symptoms of IBC are present with BC then a clinical dx of IBC is correct.  The tumor cells blocking the flow of lymphatic fluids in the skin of the breast causes the edema or swelling.  In about 20 percent of cases, the skin does not show the cells in path report.  The treatment she had is the basic IBC Treatment, the one thing to be aware of is to delay reconstruction if it is IBC.  I am supprised with BRCA2 gene, and the size of the tumor that a bi lat was not recommended. 

Best of luck to you and her, and you might want to post same question on the ibcsupport.org web site,

DianeMarieWA

Hi ibcspouse,

Thank you very much for your comments.  My daughter has her path report and I'll ask her to make a copy for me.  It has been recommended that she have both sides removed, but for reasons that are not entirely clear to me, they decided to do the LM and axillary dissection now, then proceed to radiation as soon as she has healed.  The plastic surgeon who saw my daughter along with her surgeon, stated that they would remove the left breast and do bilateral reconstruction about six months following radiation therapy.  

Because of her BRCA2 status, she will be having an oophorectomy with removal of fallopian tubes, and possibly a hysterectomy. She will also be on hormonal therapy at some point.

I just joined the ibcsupport.org website and will post the question per your suggestion.

Thanks again for your help.

LizM

If there is a question on whether it is IBC, you may want to have her slides sent to MD Anderson In Texas for a 2d opinion since they are the experts in IBC.

Anonymous

MD Anderson also has a great website with information on IBC and a dedicated clinic just to treat IBC, so they are the experts in the field.

Bette