Trip Neg 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

Hi Livs,
I am not sure whether I can help, but wanted to reply as you sounded pretty fed up and desperate.
I think the one thing that really does matter above all else is to trust in your treating team, so if you didnt feel understood or respected, then absloutely right to sack the oncologist! Hoping you fare better with the one you meet next week.
What chemo did you have? I wasnt sure whether you live in UK, USA or Australia (forgive me, chemo brain)?
I hope that my experiences and perspective might just help you think about what you are are going through. I have had treatment for triple negative breast cancer twice - in 2009 had 4 fec and 4 taxol, then WLE then rads. This year diagnosed with a triple negative cancer in other breast (this is a long story and not relevant for you). This time had carboplatin and docetaxol x 5 (couldnt manage a 6th).
I didnt have IBC, but both times triple neg, grade 3, lymph node involvement. First time the ‘mass’ grew 2cms in about 3 weeks (time between initial scans and then MRI). The first time, the tumour did respond to chemo and shrank. Second time, had already had mastecomy so dunno impact, except that because both tumours exactly the same, no-one really knows whether 2nd tumour was ‘new’ or a ‘recurrence’ - an important distinction for me in terms of prognosis.
This is all a bit long winded- sorry! Would it help to have a really good think about some key questions/issues for your new oncologist. I know it sounds obvious but I have a good relationship with my doctors, they cant do emotion, and one in particular could not deal with me when I got really cross (believe me, it was justified!). They are scientists and forget its our bodies.
Ive got a slightly different perspective on the question of chemo as I am dealing with the long terms side-effects. I’m also worried that if cancer returns, I will have already had four different types of chemo and my options will be limted.
It seems to me that what you need to know is what you will gain in terms of benefit in having more chemo (or what you risk by not doing so??) If you have more, how many cycles would they propose? How will you cope (how are you now?) if you have more? You say you had 5- but how many more were there planned?
I can completely understand that you want to blast it all and esp do so while you are ‘well.’ It sounds as though have been badly let down by professionals too. When all is said and done, you need to be sure that you have done everything you can.
The BCC helpline is staffed by a wonderful team- you could speak to them. I have. Sometimes it helps to just talk it all through.
There are some very knowledgeable ladies on here. Hope they come on soon.
Take care and good luck, Rattles

Hi Livs, I have just spotted your post,
Firstly let me tell you about my own DX. I have IBC with mets to lungs and spine , dx from the start, 24/02/2011… I had 6 cycles of Docetaxol with Carboplatin, I also have Herceptin, the chemo worked well for me , to cut a long story short I am currently NED(No Evidence of Disease). When I had Mx and full node clearance there was still some cancer signs in my breast and nodes, my Onc said the rads would mop up any remaining cells.
I have spent the last 18 months making friends to ladies with IBC through Facebook mainly, but also some American websites, One particular lady is called Terry lynne Arnold, she is also an IBC survivor( triple neg) who works very hard to help with research of IBC. I have found these ladies a great support and full of advise. I don’t know if you have come across her but if you want any info let me know. Knowledge is power !!
Jean x
link to Terrys facebook page

rattles & tillybob

tillybob so sorry to hear your mets and so happy with your current ned…((happy))

thank you both, loved reading yr posts and rattles please dont ever apologise for your effort when you call it long winded, its not its precious info that i appreciate.

will definitely have a look at facebook Terry lynne Arnold…amazing

& rattles hear what you say and have to put it into perspective, so sorry you had to endure this a second time.
im in primary stage now and more than like will go to secondry and to be honest dont like my chances then, im not being negative and i know stats are just that but im just a realist.
my thoughts are that i want to kill any of the little suckers left now and im sure there are quite a few floating around still.
my margins after mastect were only 0.3mm and having 18/24 nodes positive and cancer was still huge my way of thinking is lets try just a bit more before its mets.

just need to find an onc that i trust, whatever the outcome good bad or ugly i just need to have confidence that we gave it our best shot.

thanks and much luv to you both.