Anyone with Info about IBC

Gatsby54 · New User Joined: 10 Sep 2007 Posts: 3 Location: AZ

Hi Everyone,

I've been lurking for about a month and have been afraid to say Hi, but I have so many questions, I just need to talk with someone. Sorry for the length of the message.

I am 53, have been perimenopausal for 4 years, and only spotted last month (2 weeks late) instead of having a period - which is the first time this has happened. 5 weeks ago, I had severe pain just above my left breast. I also noticed what appeared to be slight bruising and warmth. Two days later, I started having sharp pain in the breast, under my left arm, down the underneath of the arm to the elbow, and up through my left collar bone and neck (all the lymph node places). I also had a place about 3 inches above my breast where the skin felt "sticky" for about 10 days. I went to the doctor, but my doctor could not find any swelling in the nodes (or anything in the breast) despite the continuing pain. (I do have systemic lupus, though, and I'm not sure exactly how my immune system reacts to anything at this point). He thought the "sticky" skin might have been shingles (although no blisters appeared). He also thought the other area might be a bug bite and gave me 10 days of antibiotics

The doctor referred me for a mammogram due to the pain, which was negative except for denseness in that breast which looked the same as the previous 5 years of mammograms. After getting on the web and terrifying myself about IBC (and seeing it was often mis-diagnosed as a bug bite), I asked my GP to refer me to a breast specialist, as my maternal grandmother had BC at 35 and I've always had a great fear of it. The doctor saying I might also have shingles also scared me because I know this can be a sign of an underlying cancer.

Of course, 2 weeks later at the breast specialist appointment, the discoloration had faded and she said she was 99.9 percent sure I didn't have IBC. What made me uncomfortable with her opinion was that she stated that IBC doesn't cause pain. All the websites on IBC list pain in the breast as one of the symptoms. This made me doubt everything she said. 3 days after my appointment with her, I got a red, raised rash on that breast (just to the right of the areola) about 1 1/2 inches long. Her office could not fit me in to see her at that point. The rash lasted about 10 days. I have also noticed 6 or 7 little "bites" (tiny, raised marks) that come and go quickly (within 24 hours) during this whole thing.

My PCP (who is wonderful and hearing my concerns about IBC) requested a breast MRI, but the insurance company (TRICARE) is denying it because there is no palpable mass. I have appealed the decision and sent them info on IBC as they appear to be clueless about it and the fact that you rarely get a mass/lump with it.

I am still having the pain, mostly in the breast and down the underside of my arm to the elbow, and the occasional tiny "bite" mark. The breast is very, very slightly pink (an area the size of a quarter in the location of the original rash) and I also see a very slight "bruise" about an inch above it. (Although my husband says he can't see what I am calling a bruise).

My questions: Does this sound like IBC? Would the rash fade or would it persist/worsen if it were IBC? Since it has been 5 weeks since the first symptom, would I be seeing something else if this were IBC? Besides continuing to push for the MRI, what else should I be doing at this point? I haven't been able to think of anything else and am absolutely worried sick. Any ideas/advice/comment would be so greatly appreciated!
_________________
Pam

Muttsmom · Posted: Mon Sep 10, 2007 5:19 pm Post subject: Re: Anyone with Info about IBC

Hi Pam,

1st, shingles and cancer as far as I know aren't related at all. You can get shingles during chemo or anytime your immune system is compromised. It's from the same virus as chickenpox, so if you ever had them, you can get shingles. I had them during radiation, which was after chemo.

As far as IBC, I have a good friend that was dx with it and as far as I know, the rash and fever of the area doesn't come and go. But, like any other kind of BC, the only way to be sure is with a biopsy. Mammograms are great for many ladies, but they also miss large tumors in others, like mine did.

I personally would ask for a biopsy so you have a definate answer and not have the contant worry. Not knowing is horrible.

I'm troubled with the fact that the breast specialist couldn't find time for you. I'd ask my PCP for another recommendation or do what I did when I was told I was fine, to come back in a year, I called a surgeon myself and had the biopsy done.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

Gatsby54 · New User Joined: 10 Sep 2007 Posts: 3 Location: AZ

Nancy,

Thanks so much for the quick reply. My PCP is going to do a skin punch biopsy himself (since he doesn't have to ask permission from the insurance company to do it). He did say with IBC that a negative biopsy isn't definitive since there is no mass to biopsy and they're just trying the biopsy in an area that looks discolored/red, but that it is worth a try anyway. He is also going to continue to push the insurance company on my appeal for the MRI and on a second opinion from a breast specialist in IBC.

If the insurance doesn't come through, my husband said we would set up a consultation with an IBC expert ourselves and see what they recommend.

The "not knowing" is definitely enough to drive one over the edge. I can't seem to concentrate on work, my husband or anything but this worry.

Again, thank you for the reply. It was so kind of you and much appreciated.
_________________
Pam

Muttsmom · Posted: Mon Sep 10, 2007 8:05 pm Post subject: Re: Anyone with Info about IBC

Hi Pam,

I just asked the friend of mine that was dx 9 years ago with IBC (and doing great Smile

and she said the Skin Punch Biopsy is what was done to confirm her IBC. Sounds like that's the only biopsy they do for IBC since 9 years difference and they are still doing the same kind of biopsy.

Keep us posted.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

Muttsmom · Posted: Mon Sep 10, 2007 8:14 pm Post subject: Re: Anyone with Info about IBC

Hi Pam,

This is what my friend said about how hers started and another lady she met on a BC board:

Mine started like a sore pimple, and I think Maryann's started that way too. After a little while it was like mastitis, (a sore, hot, infected breast), but later it developed a thickened appearence. Mine would get less red at times though. This is not a type of cancer that you can wait around with, although it took me several months to get diagnosed, but she should have it checked out soon.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

Gatsby54 · New User Joined: 10 Sep 2007 Posts: 3 Location: AZ

Nancy,

Thanks for the further information. I had the skin punch biopsy - just waiting for results now. Doctor was hoping to hear by the end of the week.

It's so good to hear of your friend's survival story - it really gives me hope that if it is IBC, I have a chance to survive it. Just trying to hang onto every possible good outcome.

I'll let you know when I hear something. Thanks so much again for the info and your interest - it means a lot to me.

Pam
_________________
Pam

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