Freaked out!!

Hi girls!! I haven’t posted in awhile but I use to post on Secondary forum. Yes I have metastatic breast cancer in my lungs. I had a BC in 1995 and a bilateral mastectomy. In Nov 2005 found it had set up camp in both lungs. I have done very well, have been on vinorelbine chemo for 2yrs now and tumors have remained stable for 3 1/2yrs.

NOW the surprise!! Just about two weeks ago woke up with and inflamed area on my right breast. Left it go over that weekend and it did get lighter. Went for chemo last Wed and onc said it didn’t look sinister and put me on an anibiotic. I will be finished the meds tomorrow and no changes. I talked to the nurse practioner and she said biopsy time for IBC.

Just wondering if anyone here has had IBC long after a mastectomy. This has me more scared than my mets since if it is IBC it came about while I was already on chemo and have very little sking that would be breast skin. I have a saline implant and had expanders to stretch the skin.

By the way I live in the USA, but always liked this site the best. Thanks for listening, Funnyface

Sorry I am adding a post so that this goes back to the top. Hope someone out there will be able to advise.

I just wanted to wish you the best and add to the previous to get it at the top.

Good luck.

Hi Funnyface

Sorry I can’t help but bumping this back to the top for you. Take Care


Hello - sorry to hear that you are going through this new worry… I think most of us in the IBC section have only had fairly recent diagnosise - last year or so… I’m not sure if anyone on the secondaries section would know of anyone who has had a late case of IBC (as some of them have been posting so much longer…)

Sorry i can’t help more…


Hi funnyface,

Totally understand why you are freaked out.

Your BCN has suggested the best course of action. Only a core biospy will determine if the rash is indeed IBC. It’s good they they are moving quickly after trying antibiotics, though scary as hell for you I know :frowning: Hopefully you will just need a further course of stronger antibiotics.

I don’t personally know anyone who has had a dx of IBC after such a long time. However, I use the site for reference and have read posts where ladies have developed IBC following reconstruction, so a shortish time after their initial dx (the intial dx was not IBC).
Take a look at the site, they do have an IBC forum.
IBC is still a rare dx, but it does respond well to particular chemos (FEC/TAXOTERE).

I hope your skin shows some improvement quickly and that your biospy results are clear.
Please come back and let us know how you get on.

Jackie x

Hi Girls!! I’m trying to post once again. My posts never seem to arrive. First of all thank you to those who kept bumping up my posting.

Jackie thank you for the info on the other site. I did pop in there and took a peek.

I did get my results today and it is not IBC. It is an infection and they are waiting to find out the best antibiotic to use on it, since the other one failed.

If you ever need me you can find me on the secondary forum. I just hope none of you need to come there!! Hugs, Funnyface