ibc recurrence

Hi my name is mel and I have inflammatory breast cancer can anyone see my messages???
Only joined today
love Mel xx

Hi Mel,

was just about to reply on the other thread … but here it is instead!

I was just diagnosed very recently, in Feb 2008. I’m 40 years young, and have two babies aged 2 & 8 months.

My story so far as it is …
Early Jan 08; small lump about the size of an almond in my left breast, but as I was breastfeeding my son, I assumed it was a blocked duct
Mid Jan 08; lump the size of a plum, so booked to see GP, a week later seen with lump the size of an orange & refered to be seen at breast screening
End Jan 08; no mammo as still breast feeding, but ultrasound and core biopsy, lump now 13cm x 10cm
Feb 13th; IBC diagnosis
Feb 14th; CT scan
Feb 21st; Hickman line inserted & first chemo (FEC) & brain MRI
Mar 3rd; Bone scan
Mar 13th; Second FEC
April 3rd; Third FEC cancelled as lump increasing in size & CA125 increasing
April 4th; First Taxotere

My IBC is grade 3, and stage 3, so pretty shitty! On the plus side I’ve only got spread as far as my lymph, and it’s Her+ & ER+ so will be having Herceptin for a year & Tamoxifen for five years.
I’m waiting to hear whether or not I’ll have surgery, unless the lump shrinks a lot I’m not sure, but before then I have three more lots of Tax. Eventually I’ll be having six weeks of rads.

Hope this helps some, Love Rebecca x

Hi Rebecca
So glad you answered me was worried noone could see my messages.

I am 34 and have a 15 year old daughter.
Have had this for 3 years.
May 05 found lump was told it was fibroedanoma or whatever???
end of may nipple had turned in had a core biopsy diagnosed ibc
had 6 fec, breast removed and implant put in at same time, rads 20
june 06 hercetin for a year
as soon as herceptin stopped skin rash put on 6 tax more rads 8 put back on herceptin
2 months later more skin rash only on affected side again.
dont know what grade i am chose not to ask to many questions.
Yours is different from mine though as i not having tamoxifen.
Hope you are well after your tax. How are you finding it???
Hope your children are ok too, must be hard work as they are so young, they’ll keep you smiling though im sure
love mel

Hi Mel

It’s good to talk!

IBC is so relatively rare, and to be honest a “worse” disease in some ways as it often goes undiagnoses & threated as an infection

Tamoxifen is because it’s ER+, and it’s for five years. I also may need to lose the ovaries as I’m still pre-menopause.

Tax had, in honesty, been hideous. My mouth feels like a sewer, my bones ache, and all my food passes straight through without stopping! The good thing is it’s mean’t to do the trick with shrinking nasty lumps.

The children are great, but demanding, but they do give me a reason to kick this into touch!

Love, Rebecca

Hi Rebecca
I agree about the tax I found it hard… also agree about IBC very hard to detect.

Been to see my onc today, got skin mets not life threatening but he got me signed up for that new drug trial lapatinib and also the chemo tablet capecitabine, not starting yet as he thinks that although skin met is back the herceptin is keeping it contained. but at least there are other options for me, I will never get rid of it but at least they can control it.

It is good to talk to someone with ibc as you dont feel so alone, trust us to get a rare one, we must be special!!!

Glad your children are good and you sound fine.

Life’s good keep chatting

Love Mel x