For Anyone Knowing About IBC

Public Archive
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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 GP (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 (from US - sorry if there are Americanisms in my message)

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hi pam when you went to breast clinic did they do a mamogram or ultrasound
as i feel you need to be checked, you are having far too many symptons and not enough answers

so i wld push blooming hard to get the referal

love and support
cee

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Cee - thanks for the note.

I had a mammogram which showed the same, usual breast denseness as previous ones. They recommended the MRI because of the pain, which is what my GP is pushing my insurance company to approve. He is also trying to get me in for a second opinion with a high-risk breast specialist since most of the symptoms came after the first specialist appointment. My wonderfully dear husband has said if they disapprove the second opinion, we’ll get a consultation on our own. (Wouldn’t be able to afford tests, but if the consult recommended some, maybe the insurance company would re-look).

The waiting is just terribly difficult - with the worst-case scenario running around in my head 24 hours per day.

Thanks again for the note and for your support - it is much appreciated and a true blessing!

Pam

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Hi Pam,

First let me start by saying I have IBC.

I’m not sure about your symptoms, obviously we are all different but any breast pain, rash or swelling needs to be investigated thoroughly.

Mammograms are not the best way to dx IBC.
You need to request an ultrasound and a biopsy.
The fact that you have already had some antibiotics but the rash persists does concern me. I have not heard of the rash coming and going, usually the symptoms of IBC do get prgressively worse so I sincerely hope all your test results are good.

I must add that I am astounded that a breast ‘specialist’ could state that there is no pain with IBC.
You are absolutely right, it is one of the main symptoms.

Please let us know how you get on with your tests or if the rash has cleared up (hopefully it has).
Take Care,
Love
Mabel
x

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Hi Pam

Just wanted to say Hi, and definitely think you should push hard for a referral. OK for them to say no, but it is not their health at risk. I cannot believe that they won’t do this. Can you not change docs and see if they will refer you.

Good luck and I hope that you get somewhere so can get some proper answers, but remember we are all here to help you whatever the outcome and will support you through this.

Take care
Love
Dawn
x

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Hi Pam, I echo dm,s post, push girl. remember YOU don,t work for your doctor HE/SHE works for YOU
Best wishes,

Rosie xxxxxxxxxx

PS. Remember, Its YOU wearing the hospital gown.

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Hi Pam, sorry you are having such difficulty in getting a proper diagnosis.

I had invasive ductal carcinoma and DCIS in Jan 2003 - had lumpectomy and then total axillary removal, as the cancer had spread to my lymph nodes. I had our normal UK 3 yrly bc mammogram in Nov 2002 and got recalled in Jan 03 - some kind of mix up with another patient with same name led to the delay. I then had the three step procedure - compression mammo, ultrasound and core biopsy. There was no doubt about the cancer diagnosis on that day, subsequently comfirmed by the pathology report of the core biopsy. Even in my naivety I knew a spiculated black mass on the x-ray meant cancer. I had a non palpable 2 cm tumour, which even my GP could not feel in either breast, so I was perplexed as to why I would be recalled. I had however, noticed for some time, pain in my underarm, radiating down to my wrist, but thought it was arthritis and did nothing about it. I guess the spread to the lymph nodes caused this pain. I have never been offered, or asked for, an MRI - they are not usually used in the UK for diagnosis of breast cancer. The only definitive dx is through core biopsy, or in the case of Inflammatory Breast Cancer a skin punch biopsy. Perhaps your insurance company will approve one of these tests?

You really have to be proactive and your own best advocate. I think we all know when something isn’t right, and our instinct usually proves us right.

Good luck with further testing.

Liz.

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Mabel, Dawn, Rosie, and Liz -

Thanks so much for your input/support. My GP did a skin punch biopsy which came out negative (he didn’t need insurance company approval to do it). He did say that a negative result doesn’t mean I don’t have IBC, but that a positive result would be definitive for a diagnosis. I guess the problem with this biopsy is, since there is no mass involved, it is difficult to tell if you’re biopsying the correct area. He took the sample from where the skin was still pinkish from where the rash had been.

Yesterday, the insurance company turned down the MRI again. But they did approve me to go for a second opinion at the Mayo Clinic in Scottsdale, Arizona (about 3 hours from where I live). The Mayo (in all 3 of its locations) is very well known for high-quality care here in the States. My appointment is this coming Tuesday. So I’m hoping I can get my concerns addressed and get approved for whatever testing is needed to tell me where my symptoms are coming from. (I hope the least they will do is an ultrasound).

I’ll keep you posted. Thanks again for your concern and support. It means a lot to me!

Pam

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Hi Pam,

Just want to wish you all the best for the second opinion on Tuesday.

Sounds as though you are pleased at being referred to the Mayo, I think it helps a lot if you have faith in the hospital doing the tests as you will trust their decision.

Still got my fingers crossed for a good outcome.
Take Care,
Love
Mabel
x

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Hi Pam

Wanted to wish you well for Tuesday and hope that these results are more conclusive and good news too.

Let us know how you get on and keeping everything crossed for you.

Take care
Love
Dawn
x

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hi hon, i think cos you got a negative result on biopsy,it sounds as though there is no cancer, but a second opinion does not hurt so i wish you well for tues, i go next fri at 2pm

all hopes and prayers
love
cee

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Hi everyone – here’s an update.

Went to the Mayo. All they did was look at the breast, saw no clinical signs, so they said they were 99.9% sure I didn’t have IBC. (Although they have misplaced 5 years worth of mammograms). They told me to go back to the GP to address the continuing pain. Total waste of time and money. I somehow thought I could go there and they would be able to tell me what is wrong.

The small bruise showed up again a couple days ago in the exact same spot, but no other “clinical” signs - just the pain in breast, underarm, down the arm, in collar bone area. Also have since had pain on right side of collar bone and underarm (although not a lot). Lymph nodes still not swollen. The pain is intrusive. Every time I try to forget about the whole thing, the pain becomes more intense and makes me start worring sick again.

What do I do now? Sit back and wait and believe this is nothing serious? If this is really IBC, will other symptoms finally show up before it is too late to do anything? Are there some tests that can be run (besides a 2000 MRI) that I should consider paying for myself and that would be useful? Should I demand that my GP do a skin punch biopsy of the bruise? My patient husband is losing his patience - after all, if the Mayo says you don’t have IBC, then you don’t have IBC.

Feeling very alone at this point.
Pam

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ceegra -

How did your appointment go? You’ve been in my prayers.

Pam

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Hi Pam,

Speaking from my own experience IBC is such an aggressive cancer other signs would have appeared by now and would not disappear/reappear without some kind of treatment.

That said I can perfectly understand your fear and confusion at the pain and rash you are experiencing. You do need an answer.

The biopsy would definetly have confirmed IBC.

In my case they took 8 samples, you don’t say how many biopsies were taken.
These were all taken from the outside of the breast and one was a ‘cut’ rather than a ‘punch’ due to breast skin being thicker in areas.

If it were me I would be keeping a very close eye on things, looking for any changes or maybe a pattern. Could the rash/bruising be cylcable?

Mabel

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hi gatsby
why do you think you have ibc, you have had the biopsy and full examinations, the pain maybe anything even relating to a boney injury, you need to persue the prob of pain with your gp

i got the all clear even tho they found lipomas and a fluid cyst they did nothing and told me to ignor them unless they cause me probs,

i do get breast pain but i put that down to the fact that i have larger breasts

sweetie i would be elated that you dont have ibc

wish i could ease your pain tho

love to you
cee

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Hi everyone.

The bruise came back again. GP looked at it and thought it odd it always comes back in the same place and is where all the pain started. I’m also now having sharp pain under my left rib cage. He referred me to a surgeon to do a deeper biopsy (along with an ultrasound). (There was only one sample taken during the skin punch biopsy and that was after the rash had faded). The appointment is tomorrow.

Thanks for all the input and support. It is much appreciated. I’ll post an update when I have one.

Thanks again.
Pam

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Hi Pam,

Just to wish you good luck with your next biopsy.
Hope you get some answers very soon,
Love
Mabel