New Here ... Is it IBC and what should I do next?

carol18

Hi everyone, I woke up 3 weeks ago with pain so bad in my left breast I couldn't stand it. I started antibiotics immediately after a call to my family MD who thought mastitis. Pain continued and developed redness after 1 week of antibiotics. Seen by specialist who changed antibiotics and ordered US and biopsy. US negative. Mammogram 1 month before this started showed a "suspicious" area which was also seen on MRI but told to wait and have repeat US in 3 months. Anyway, had biopsy (1 punch) and told it was negative. Was told I've had enough antibiotics and they don't know what's wrong with me. This morning I wake up and I have what looks like bruises on the breast. I was told yesterday when I went to have my stitches out from punch biopsy that I was wasting their time and nothing was wrong with me. Well, I don't think it's normal to have such pain ... mainly stabbing like a knife in the nipple and areola, hurting just to have blouse touch me ... redness that comes and goes ... and now this "bruising". Can anybody suggest what I should do next? I'm scared but after yesterday being told I was wasting their time, I feel intimidated.

Thanks for your help.
Carol

shrink

Hi Carol:

I had the bruising and redness that came and went. My skin biopsy was neg. but I was still diagnosed with IBC because of the sudden onset and my descripton of the process. As you probably already know IBC is a very rare and very aggressive form of bc and should be treated immediately. Don't let the doctors blow you off. Get to a facility which speicalizes in bc dx and treatment. You may feel intimidated but it's your life we're talking about. I get a lot of information and support form ibcsupport.org. and MD Anderson in Houston which specializes in IBC. Sorry you're joining us here but you've come to the right place. Let's hope it's not IBC but even if it is, there's treatment and hope.

carol18

Thanks for your reply. How were you diagnosed if your biopsy was negative? Mine was negative too. The center I'm going to is a cancer institute.

shrink

IBC can be diagnosed clinically, that is, based on presentation and physical exam - redness, rapid onset, swelling, bruise, pain etc. False negatives are common I was told. I won't know for sure if this is, in fact, IBC until my surgery which will allow the pathologist to explore larger areas of tissue. So, I live with the ambivilance. The treatment is the same though as for any large tumor (6 cm) with node involvement so I'm not missing out on getting what I need pharmacologically (4Ac and 4 Taxol), surgery, more chemo, radiation and medication but I would like to know for sure. I also have DCIS, ILC and IDC. How could all of this be in one small breast? I had a mammo a year and a half prior to any symptoms and a gyne exam 6 weeks before the mass appeared. No findings until I saw that bruise and a walnut sized, diffuse lump/clump which grew rapidly during the next two weeks and then got smaller and softer. I thought it would go away and went back to the gyne when it didn't. She immediately sent me to the surgeon who did needle and core biopsies. He phoned the next day with the news (while I was in a cab on a business trip). The good news is that the mass is responding to chemo and now down to 3.3 cm from 6 cm. I think it's neat that my BS's name is NED!

carol18

Hi, hope it's okay to write again ... you seem to be the only one responding to me and I really don't know where to turn. Yesterday was the day I was supposed to call for my biopsy result, which I did. The oncologist said the one tissue sample they took in a punch biopsy was negative for cancer. Yeah! ... or no? I told her that I had developed a red speckled appearance on my breast and bruising. She said, "Oh, what's that from?" Duh, I wanted her to tell ME, not vice versa. I still have pain, this weird redness, now bruising. She finally said she would take a look but couldn't imagine what the bruising, etc. was from. I have an appt today at 3pm. My question ... am I crazy thinking something is going on with the breast or is she crazy thinking there's not? What would you do next??? Please help me.

shrink

Write anytime and you're not crazy. As you know, IBC is a rare form of bc and many doctors have never seen it or even know about it. Bruising and reddish rash and pain are some of the symptoms of IBC and the nurse or at the very least the doctor should know that. It may be something else but insist on seeing the doctor. Have you had needle biops and core biopsies yet? My skin biopsy was neg. too but I had so many of the other symptoms, that it's part of my diagnosis along with ILC, IDC and DCIS (found by the needle and core biopsies). If the doctor blows you off and even asks you what you think it is, tell him/her you think it's IBC and insist on another opinion soon. Please let us know what happened.

carol18

Hi Shrink, thanks for your response. The oncologist stood me up today for my appointment. I waited 2 hours and no show. They said she was in surgery and had surgeries scheduled all day and didn't know why she told me to show up today. It's so much different here in Italy than in the US. I told hubby I want to go home to the US if this continues. Husband finally got in touch with oncologist and she said to come to the cancer center tomorrow (Saturday)and she'd take a look. She promised him she would be there. This is driving me nuts. No one here will listen to me. I hope tomorrow will be different. I don't want to die because they made me wait and wait. There are no nurses to talk to here ... you go directly through to the doctor. Even today at the cancer center I had to ask to people walking in the hallways where the doctor was and they just all said she's in surgery all day and we can't help you ... you have to talk to her. You never know how much you've got until you don't have it anymore. The US may have problems with health care but at least there I think my voice would be heard by someone. Thanks again for writing. I'll let you know tomorrow after my appointment what she says.

carol18

Hi, I finally saw the oncologist today. She told me that the one sample punch biopsy came back as "inflammation", not IBC. She refused to do any more biopsies. She said that the discoloration does not go away and come back again. She said I probably have diabetic mastopathy. In researching this on the internet, I find this disease is mostly found in diabetes type I patients (I am type II and under control) and that the patient presents with a really hard lump ... so hard that it's difficult to pass a needle through for biopsy. I have no hard lump. She gave me some cream to put on for the "bruising" and that's that. I tried to get a copy of the pathology report but the department was closed and she said she could not print it out from her computer because that was for "internal use only". So, to see what's actually written on the biopsy report, I have to wait until Monday. Then, she told me that the new mass on my mammogram was what worried her and that I should have a "mammotome" of that nodule very quickly. I am so fed up with this whole thing. What would you do?

shrink

I don't know what a mammotone is (ultrasound?) I'd still seek another opinion. My onc said that the inflammation could come and go. I would post on the ibcsupport.org site. It's exclusively for IBC. You will probably get some quick responses there. For each month there are hundreds of posts. You can search by date, topic or author and register to post your own questions. Maybe by the end of this weekend you will have more information and support to go on.

Good luck with this. It sounds confusing and terrifying.

Shrink

VAY

Shrink:

You need to find another doc immediately! No one here or any other website is qualified to give you an accurate diagnosis unless they are physicians. There are many different symptoms of IBC so you can not compare what you have to anyone else. I never had swelling or pain or redness, etc. The only way to truly diagnose is with a core or punch biospy. I pray that this is merely an infection of some kind and I know you are not looking for trouble but until you are comfortable with the results, you need to keep pushing. Get your path report on Monday and then look for another doc. Besides, it does not sound like this one is respecting you very much! Good luck and keep me posted.

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mrs_X_Sunneedazee

I was blown off by Drs for almost a year! My IBC first presented as "mastitis" in June 06. I had antibiotics, and ended up in the hospital with IV antibiotcs. They "helped" but my breast went from completely red and inflammed to a purplish pink bruise looking. The pain went away, but my breast steadidlly grew larger and larger until I had a baseball size mass in my breast. (i was breastfeeding an infant with my good breast this whole time so the DR kept on telling me there was just milk in the breast and scar tissue). It wasn't terribly painful, but I did have occasional stabbing pains and lots of itching.
When I had my frozen section punch biopsy it came back negative, but they had done a lymph node biopsy in my armpit, and a core section biopsy and they both came back positive.
I really would visit another Doctor and make sure that this isn't IBC. I saw 4 different DR's over a 11 month period before mine was finally diagnosed, and by that time it had spread!!
I don't want to worry you, but I wish I would have followed up more aggressively sooner! It is better to be safe than sorry! Good luck!