inflammatory breast cancer

[Siamo Uno]

My sister in law, who is 53, had a pretty good sized benign lump removed from her right breast in late August. She latere developed what was thought at the time to be mastitis, and has been treated with several rounds of antibiotics, with no improvement in her symptoms. Two subsequent ultrasounds showed no infection remained, and yet her breast is enlarged, painful, red and purple looking, and her nipple is inverted. So the surgeon decided that she needed a mammogram, which she had last Thursday. That mammogram showed two suspicious areas in the breast, and also skin thickening. So she is scheduled for a skin and core biopsy this Friday. After her mammogram, she got up to use the restroom, and heard the techician ask the radiologist if he thought it could be inflammatory breast cancer. She did not hear his reply, but went home and looked it up on the internet. Needless to say, after what she saw on the internet, she is very frightened, and called her dr. today to see if she could have her biopsy done sooner than Friday, since she has now developed a nipple discharge over the weekend. She has all the symptoms of inflammatory breast cancer. Her surgeon is out of town until Thursday, so her biopsy can't be done any sooner. Given that she has had these symptoms since the beginning of September, she is afraid for any more time to go by in case it is inflammatory breast cancer, because it spreads so quickly. She just lost her mother on August 1st to small cell lung cancer, so naturally she is worried she will suffer a similiar fate. Given what I have told you, is there a chance that this is not inflammatory breast cancer? She has been on high dose broad spectrum antibiotics for over two months, and the breast symptoms are worse, and now there are worrisome mammogram findings.....

[katarina777]

Thanks for the update. I am no doctor, but sometimes that may actually be to someone's advantage. I am sorry you and your sister in law have had to go through this ordeal.

I really, really want to encourage her, as you, not to stop now. She just can't. She needs to go to a top notch breast cancer clinic, or surgeon, familiar with IBC and everything else.

Don't waste you time on anything less but the best, and I agree with you, no dermatologist.

I myself had IBC and 'they' all immediately recognized this, even before the biopsy results came back.

I don't know what the symptoms of mets are, but I do know that my cancerous lymph nodes could neither be palpated, and nor did they show up on MRI or ultrasound. luckily, the surgeon really knew what he was doing when he did the biopsies, also 4, but all at the same time.

Please keep us, or me, informed? best to you, Kat

[Siamo Uno]

Another update...my sister in law got her biopsy results and all four biopsies were benign...so she has had a total of five benign biopsies since she has had the symptoms of IBC. Her dr. told her today that despite her symptoms, she doesn't have IBC. She said she can refer her to a dermatologist, or a breast specialist, and now my sister in law says she doesn't want to do anything at all. She is tired of being poked and proded, and she has five benign biopsies under her belt, so the dr. has now convinced her she doesn't have IBC....Well she doesn't have an infection either, since she has had so many rounds of antibiotics. And yet her breast pain, redness, swelling, itching, peau d' orange, thickened skin, and enlarged lymph node remain and are progressing. So I want to know what you doctors think. Should she just assume she is fine, or pursue a second opinion? Of course as I said she now doesn't want to get a second opinion because the surgeon has her convinced she is fine. I know IBC can be very hard to diagnose, and I read today that sometimes it is diagnosed based on clinical presentation only, without any pathological results to back it up...I'm afraid she still might have it and if she does nothing, it will be too late to help her by the time she starts having symptoms from metastasis....I'm so worried about her.

[katarina777]

This sounds very complicated and we really do not have enough information, like: "Was the lump that was removed really benign?", and "Why was it removed"?
I can understand why she is scared, as this is very upsetting. I don't think she will be able to get an earlier biopsy, as I don't think anyone not familiar with her case would touch this. best wishes for both of you, kat

[Siamo Uno]

What are symptoms of metastasis of IBC?....if someone has it and it remains untreated, what are they likely to experience?

[Siamo Uno]

I wanted to update on my sister in law's condition. Her breast symptoms continue to worsen, and she now has a very enlarged lymph node in her armpit. The core and skin biopsy she had came back benign, so her surgeon decided to try yet another round of antibiotics and have her come back in two weeks for more biopsies. There was absolutely no improvement on the antiobiotics, in fact, the symptoms have worsened, with the nipple still being inverted, even more peau d' orange, and skin thickening and nipple discharge. The breast is twice the size of the other one. And the pain has increased trememdously and not only does her breast hurt, but it hurts under her arm and up through her neck as well. Three days ago four more biopsies were done, and she will get the results this afternoon. Her dr. told her that she feels she got an adequate sample with the first biopsy and since it came back benign she feels these four will as well....I can't believe she would say that to her and give her false hope. Her dr. also told her if the biopsies came back benign that she is going to send her to a dermatologist! My sister in law feels that she has IBC and this has been going on for months now so if she has it then it has spread by now. She said if these biopsies are benign, she is getting a second opinion, she is NOT going to go to a dermatologist and waste more precious time trying to get a diagnosis...this is not a skin condition...even a dr. at John Hopkins who she sent her history to emailed her and told her that if things are worsening to assume it is IBC and get herself to a NCI breast center ASAP....so she said she is getting a second opinion if the biopsies are benign. She knows that IBC can be difficult to diagnose and that it sometimes takes many biopsies. I have seen her breast and believe me, this is no skin condition. I almost hope that one of her biospies comes back positive, I know that sounds horrible, but at least then she can start treatment...too much time has passed already and that is dangerous when you have IBC. I fear she will be stage 4 before they find it.

[Cleveland Clinic]

Dear Saimo Uno:  Without evaluation, it is impossible for us to speculate on what this might be.  There is always a possibility that her symptoms are not related to breast cancer but investigation, including biopsy, is necessary to sort out what is going on.