I have IBC

Hi

Yes Wendy, you are just ahead of me with this cancer. I have my 3rd chemo round this Tuesday 7 Dec. I have to have 6 rounds then a mastectomy then radiation and maybe more chemo. I have had a bone and CT scan and both came back clear but invasion is in my lymph nodes.

I actually had a an terrible feeling I had this type of breast cancer as I was still breastfeeding my youngest and he refused to feed from my left side but continued to feed from my right. I just assumed he was weening and the breastmilk would dry up but it didn't. I do alot of research on the net and this 'IBC' kept coming up from all the symptoms I had - and yes I had mostly all of them. The GP I went to said it was mastitis and put me on antibiotics, even though I told him I was scared that it was IBC. I knew it was not mastitis as I was not sick and had no fever, so I went for a second opinion and asked for an utrasound and tests to see what was going on.Two ultrasounds, two mammograms and three samples taken from a biospy and a report from the doctor who did the biopsy, stating it was suspected inflammatory carcinoma.

I knew then I was in trouble. The next day the results of the biospy came through and it was what I feared most. I am not sure why I have this cancer, it could be linked to hormones, I really don't know.

I have just purchased a wig today. I am so happy with it and I feel 'normal' again. My hair started falling out 2 weeks after my first treatment and it was everywhere, so I had it shaved off. I am on FEC100 chemo and have become neutropenic from it and ended up in hospital twice in the last three weeks.

I don't think they can properly cure any cancer, although they can get rid of it for some time but once you have had cancer you are at an increased risk of getting it back again.

I am on an IBC support mailing list which is full of IBC survivors all around the world (mostly from America). You may  already be on it but if not just google 'IBC support'.

Where do you live and where are you being treated? I live in Queensland and having treatment at the Princess Alexandra Hospital. I am happy with the treament I have been receiving although it is a very busy place. In recent weeks I have realised that so many people have cancer, maybe not IBC but cancer is everywhere and I had no idea until I got it.