ibc..path report- what would u do?

hi ladies

would apreciate any comments.

what would you do?

ive sacked my oncologist and have an appointment with new onc 18th October. i want more chemo & fingers crossed he will give it to me… i know most will say no to more chemo, save it for when you really need it, that being when it mets, highly likely, ibc trip neg 18/24 nodes - 13cm, not responding to chemo…

why i changed onc is on my 5th treatment of chemo i knew that the cancer wasn’t responding, one of the first symptoms of ibc is burning, itchy red inflammation, knew it had came back, it was again on the surface the breast next to the nipple & had all the symptoms, it was coming back full steam.
then 2 days after the 5th dose of chemo i mentioned that i thought it was coming back to the onc,
she just looked at me with that… WTF are you talking about? right then i was convinced that in australia ibc is treated completely different here US, having such a poor prognosis, the US treat it much more aggressively.

when i was first diagnosed it was 10cm, after mastectomy the path report showed 13cm, so it grew 3cm in 2 months, i know this because i had just had a scans done prior to 5th dose and it showed that nodes were shrinking and all was looking ok, the tumor had obviously only grown during the last 2 doses… it had become chemo resistant…not good- trip neg…and this so called onc looked at me like i was an idiot.

would you demand more chemo even tho in australia they don’t like to give more chemo after all traditional treatments have been exhausted…my onc… said NO! - NO WAY!
…remembering this is trip neg cant have anything else except chemo?

mastectomy 13/09/2012
pathology report reads…
lymphovascular invasion - abundant
perineural invasion - abundant
apical node involvement - abundant
ibc trip neg 13cm
grade 3 stage 3c

and if one sort of chemo doesn’t respond shouldn’t they have known and switched chemos?

i’m cool, as cool as one can be with cancer, what i do know is… i want to give it my best shot whilst im relatively healthy and what i don’t want is to have to beg or convince professional people, (those people hold the cards to my life)…just want them to fight with me,
not against…was again feeling despair & even more frustration, the feeling i had when it took all these professional people 4 months of prescribing antibiotics before being diagnosed with ibc, and in that time it spread to my nodes…they just dont get it!

what do u reckon?

treatment so far
chemo, mastect with full node - rads in next couple of weeks…

just frustrated


[color=#000080]much luv

dx Apr 2012 Inflammatory Breast Cancer 10cm - Trip Neg.
Adriamycin Doxorubicin (aka red devil) Docetaxel Taxotere/Cyclophosphamide.
6 Chemo finish 13th Aug 2012… Mastectomy & Node clearance 13/09/2012…17/24 nodes positive.
Rads 5x7 weeks soon

i am an ibc lady too…
have you checked out the ibcsupport.org site in the us? They have a mailing list, and i think there are a few Australian ibc ladies there who may be able to help you out re treatment etc for ibc in australia, and where to find the best medical team…
I hope that helps…

big hug


Hi Liv and welcome to the BCC forums

I am sure you will have lots of support soon from your fellow users soon, we do have a overseas helpline number you may wish to call, it may help to talk it over and discuss your options with one of our team. The number to call is (+44) 2076 200 077 (open UK time 9-5 weekdays and 9-2 Sat)

Best wishes


Hi Livs I have answered your post on the Triple neg thread.
Jean x

thanks you lovely ladies.


Hi livs

I also have (had) IBC (DX nearly a year ago), not triple neg, but positive everything as it seems (HER2 +++, ER 4/8 pos). I had 6 chemos, 3 FEC and 3 Docetaxel and my onc called it a “glass half full, half empty” situation after looking at my path report after MX. It took me a while to get over this comment as she wasn’t particularly positive but rather cautious. I find it hard like you to somehow accept the treatment I got is the best for my type of cancer as on the forum I can see people who have a “better” diagnosis get the same treatment, I was asking for more chemo but no luck.
Sorry I have no advise for you, just wanted to send you a big cyber hug and give support.

Love from 3N3 xx