Hi Wendy Yes I have inflammatory breast cancer. I was diagnosed 22 October 2010, almost 6 weeks ago. I am going through chemo now, so it has only just begun for me. It is a very scary time for me as I have two small children and my life has just be turned upside down. I'm not sure when you posted on here as I didn't see a date. So where are you in your journey with this terrible disease?

Hi Paula, I'm so glad you found me on here, but sorry you have this awful cancer. I have just finished my 6th and last chemo treatment I hope. I only found out about 5 weeks ago that my cancer was in fact IBC. They hadn't told me when I was first diagnosed in July. I was on the Chemo EC which is the red bag plus another bag that makes you get a sinus headache. My breast tumour has shrunk and I have another CT scan on Monday to see how my lungs and the breast tumours are going before I have to see the surgeon. I know I'm not going to like what the surgeon will probably tell me. After that I have a bone density scan booked in to check to see how my bones are before my onc prescribes me some hormone blocking pills. I'm looking forward to my hair growing back again but have ordered some new wigs as it might be 8 months before my hair is at at wearable length. It's been a very scary time for me and they have told me they cannot cure my cancer, only try and control it to prolong my life. Let me know how you get on and ask me whatever you like as I'm probably just ahead of you with the chemo treatment. I thought I was the only one in Australia with this cancer. I have had a lot of inflammation in my body for 9 years and have been unable to stop it. ( inflammed rib cartlidges ) I feel this is the cause of my IBC. Have you thought about the cause of yours?

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.

Paula, Sorry that you ended up in Hospital from your Chemo. I aways stayed overnight with each chemo treatment and I take a few vitamins to help with my immune and Q10 especially to stop the heart damage that the red bag E is known for. I had the bone scan and the CT scan before the chemo and the CT scan came back with spots on my lungs. I also had needle and core biopsys which showed lymph nodes had the cancer too. My hair started falling out about 18 days after the first chemo, after a few days I got my sister to cut it off as I was moulting everywhere. I was supposed to have the FEC chemo but ended up with just the EC. Not sure about the 100. It was supposed to change at Chemo 4 to D chemo but after another CT scan showed that the tumour in the breast had shrunk quite a bit the decided to stick to a good thing and keep me on the EC but I had to have a heart echo to make sure there was no damage already to it. Half way through my chemo, I found it was flaring up my rib inflammation very badly and I was in pain so they agreed to cut down the chemo by 10% which was a good help to me otherwise I was ready to give it up. I'm still recovering from the chemo and would like to go to the dentist whenever I'm allowed to as the chemo has made one of my teeth crumble. I'm having treatment at Cabrini Hospital in Melbourne. It's a very good hospital and everyone is lovely which sure helps when you are going through all this. You are right about the large amount of people with cancer, so many just sitting there taking in their chemo. It's like an epidemic. From the day I was diagnosed, each night for weeks I would wake up shaking and dreading the treatment in store for me and thinking about dying etc etc. Now I don't shake anymore and I sleep better although the idea of a mastectomy really freaks me out. I can't think about it I'll check out the IBC support mailing list you mention. Thanks for that.

Welcome Keli Just a quick Hello for the moment I have Just come out of hospital on the weekend after having a mastectomy with 2/3 lymph nodes taken out.. I have to go to the surgeon tomorrow to have the bandages off and because the lab report came back with 8 or the 9 lymph nodes with cancer I'm going to be sent for radiation treatment. Also I have a script here for hormone blockers which I'm supposed to start soon too. My hair has started to grow back but I didn't know I had grey hair. I'm in Melbourne and have been pleased with my doctors but must admit felt alright till I got diagnosed then was stressed out of my brain, then the chemo made me feel so ill. There seems to be no time between treatment for me to have a holiday from it all. Will catch up soon, I'm so tired now.

I have IBC | BCNA Online Network

69 Replies

WendyA
Member
14 years ago
Keli, so sorry to hear about your setback. I'll be thinking of you, so sad you have to do chemo again. That is the worst thing. I'm keeping my wigs in the hope I won't have to wear them again.

I too was told that all they could do for me was to try and prolong my life with treatment. I'm having tests next week and already getting nervous about it all.

We plan to go caravaning to Cairns this winter and I don't want anything stopping me.

All the best Keli, keep us informed.

Love Wendy
terri_parkes
Member
14 years ago
Hi Keli

I can't believe what a strong person you are. I've just reread all your posts & although all of this terrible stuff has been going on for you, there always seems to be a bright side as far as you're concerned. That really sucks that it has reared it's ugly head again & you have to go through a third round of chemo. Are you still working? I hope not. I really don't know what else to say other than my heart goes out to you. You are truly remarkable.

Terri

xxx
WendyA
Member
14 years ago
Happy Birthday Sue for last week and many more to you. You are truely and inspiration and I loved reading your post. We are doing a big trip in about 3 months time in our caravan. There are 2 times, now and too late. So it has to be now. Happy travels.

Wendy