I have IBC

Oh, Sue, what a shock, huh. I also have IBC and it definitely gets your attention. Do not read about the stats since that won't help you psychologically and also they don't necessarily have anything to do with you. As my surgeon and MO say to me, the idea is to turn IBC into a chronic disease that can be treated over the rest of my life. Mine certainly has been successfully treated with chemo twice. I am NED (no evidence of disease) and have been so for a year, and this has been a good year. I'm triple negative, so I have fewer drug options but so far I've only needed one. When I have a recurrence (very likely since I'm stage IV) I can still use the same drug and I'd expect good results within a few months.

I was on a trial to begin with (Abraxane and Avastin) but had to drop out due to problems with the Avastin (go figure since that is a pretty benign drug). But the Abraxane worked like a champ. Here's to hope that you will also be a good responder to your trial drugs.

So sorry you have got your diagnosis. I remember it well when I heard my IBC dx in Nov 2013. I feel this is a club that we never applied to, but nonetheless are now fully subscribed members. There are lots of us that have been through the treatment and come out the other end. I feel so much better now, back to my normal self. Even though I have now been dx with DCIS in my other breast, I feel so much more able to cope with this and not get so scared and upset. I'm just bringing forward my reconstruction and having a right UMX at the same time. I feel that IBC is only a special form of IDC and just behaves a bit differently. I had neo-adjuvent chemo and my swelling and other symptoms subsided very quickly and a lump formed. I didn't achieve a perfect response - but it was good enough for me as I had only a little left at surgery. I can't advise regarding Her2+ treatment, as I was Triple negative. I do know that having chemo didn't feel like being hit by a train like I feared. We all react differently, but there are lots of things that can be done for side effects, both medically and complimentary. My nurse coordinator gave me very good advise - take each stage at a time and don't drive stressed. I would also advise to accept all the help you can, and be prepared to suggest how people can help - meals, lifts, childcare etc. I tried to remember how nice it is to help others. My lovely neighbor would cook my family a meal eery now and then and it was lovely to know how much she cared. I also had a few friends and my sister stay from the UK (Im an expat in California) for a week each to help h=keep my family on track.

Best wishes and Happy Birthday Susan

Sarah xo

(Edited for typos)

Hi Sue -- I am sorry that you have become a member of this ever growing club. Getting a dx of IBC is frightening. Please do not look at the stats because they do not apply to you -- you will not become a statistic. Unfortunately IBC has been little understood, but now I find that it is getting more attention. And it should since it just suddenly appears and grows very fast. I was diagnosed with IBC in January 2005 and am now 10 years out with NED. I was fortunate in that it had not spread to any of my lymph nodes. I also consider myself fortunate in that I am HER+ and was able to take Herceptin and my chemo cocktail was taxol and carbo.

Sue, you mentioned you had a biopsy a week after your ultrasound and mammogram...were there any abnormalities on those tests?