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Topic: Please look at these pics if it is IBC

Forum: Not Diagnosed but Worried — Meet others worried about developing breast cancer for the first time.

Posted on: Feb 19, 2010 10:17AM, edited Feb 19, 2010 12:23PM by cyfarian

cyfarian wrote:

Hi.  I have been experiencing breast changes for 6 weeks now.  I am 21 weeks pregnant, so of course some changes are normal. I have been to breast surgeons, had an ultrasound and denied a biopsy.

  1. Jan 7th, I noticed a pink circle measuring 3.5 inch in diameter on my right breast.  Very tender, no lump.  After a couple of days, I put the shower head on light pulse and massaged it for 20 minutes.  Pinkness faded, but tenderness stayed.  Went to OB, asked specifically about IBC, ob wasn't concerned. Then itching in both breasts near armpit started.
  2. Feb 5th, started feeling pain in right breast where spot was up to armpit.  Intermittent sharpish pain that would last for about 30 seconds in slow pulse like throbs.  Sometimes pain felt different...like compression.  Noticed left nipple (not areola, but the actual nipple) increased in size by about 40% more than the right nipple. Left nipple stays erect most of the time.
  3. Feb 8th, noticed mild pitting.  Very visible in natural light, but UV light obliterates the shadows and makes it harder to see.

I saw two breast surgeons and they didn't seem concerned.  However, they both said at least one thing about IBC that I knew to be wrong from my research on it so I don't know how well informed they are.  I went through a 4 year journey of being diagnosed with Sarcoidosis and was misdiagnosed for over a year and told I had Multiple Sclerosis instead.  Took 4 years to get Sarcoidosis diagnosis.  Along the way, more than one doc thought I was overreacting.  I have already learned the hard way that doctors can and will make mistakes and I just want to see what your opinion was.  Below are the pictures.

Do you think the second one shows early signs of Peau D'orange pitting?  It is hard to capture on a camera.(EDIT: photos not showing up...please click on links instead...

Pink Spot

Pitting?  It is hard to capture on camera...do you see it? Early Peau D'orange?

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Posts 1 - 9 (9 total)

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Feb 19, 2010 12:01PM Faith316 wrote:

I did look at the pictures and I couldn't really tell about the Peau D'Orange.  Hard to see.  I do see the pink spot on the first picture.  It really doesn't look like what my IBC rash looked like.  The fact that you had the itching or discomfort in both breasts instead of just one is reassuring that it most likely is not IBC.  Pregnancy does cause a lot of changes in the breasts including increase in size and tenderness.  But, that doesn't mean that it couldn't be something.  You are smart to have it checked out.  Maybe your dermatologist will do the punch biopsy for you.  They can do that.  It will ease your mind.   My guess is that it is not IBC.  Please let us know what you find out.

I'm also curious --- what were the things about IBC that your doctors said they were wrong? 

DX 4/08 IDC, ER-, PR-, HER2+, IIB, Grade 3,lumpectomy,2/8 nodes,4 AC,12 wks.Taxol,Herceptin,30 rads. DX IBC 6/09 while still in treatment. Now Stage III. 6 mo. of Xeloda done, still on Tykerb. Uni-mx & another node dissection 2/4/10.

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Feb 19, 2010 12:11PM, edited Feb 19, 2010 12:20PM by cyfarian

Thanks Faith.  Obviously I do not want it to be IBC, but I have lost trust in doctors in the last 4 years.  I just have a gut feeling that there is something wrong and want it looked at further.

The first doctor said that dimpling is normal during pregnancy.  She also said that she suspects that my pink spot was folliculits.  I went home and googled folliculitis, which looks like a zit.  My pink spot looked absolutely nothing like a zit.

The second doctor said that if it was IBC, then masectomy would be first line of treatment when I have read repeatedly that chemo is first.  He said you can't have Peau D'orange without the skin being pink, but I can't find anywhere if that is true or not.  Can you have just the dimpling on white skin...or maybe just slightly pink skin?

I really think that they probably have never had a real life case and only look for textbook presentations.

I'd love to hear other people's opinions about the pics and if they have a suggestion as to whomelse I could follow up with other than a breast surgeon....will definitely check with a dermatologist.  great idea!

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Feb 19, 2010 12:46PM Faith316 wrote:

You are right.  Mastectomy is not the first line of treatment for IBC and yes, you can have Peau D'orange in an area of the breast that is not affected by the rash.  You are also probably right that those doctors may have never seen a case of IBC since it is so rare. 

Upon looking at the first picture again, it does look like there is a 'center' in the middle of the pink.  Maybe it could be folliculitis that hasn't come to a "head" yet.  At any rate, trust your gut and get it checked out further if you have any doubts.  Better safe than sorry.  Re: going to the dermatologist ---- you could also probably get in to see a dermatologist pretty quick.  Let us know how it goes.

DX 4/08 IDC, ER-, PR-, HER2+, IIB, Grade 3,lumpectomy,2/8 nodes,4 AC,12 wks.Taxol,Herceptin,30 rads. DX IBC 6/09 while still in treatment. Now Stage III. 6 mo. of Xeloda done, still on Tykerb. Uni-mx & another node dissection 2/4/10.

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Feb 19, 2010 12:48PM awb wrote:

of course, I'm not a physician, but in the pictures it looks like mastitis, which is extremely common during pregnancy and nursing. The breasts go thru tremendous hormonal changes and can look very different from the norm.

Anne

"I don't know what the future holds, but I know who holds the future"

Dx 9/5/2003, LCIS, Stage 0, 0/0 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Feb 20, 2010 01:21AM ateepay wrote:

IBC can happen in both breasts but that is really rare.  And it is very hard to tell from your pictures but your gut feeling should be your guide right now.  There are more doctors across the country who have seen many many cases of IBC, so if you are still feeling you need a "skin" biopsy and a doctor who understands IBC, there are many here that can help you.  

Ruling out IBC will calm you, which is what you need for your babies and your health.

Patti 

Patti

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Feb 20, 2010 01:33AM Fidelia wrote:

Once you lose faith in the infallibility of doctors you cannot rest until you get an absolutely reliable diagnosis from a test or set of tests that YOU can believe will exclude your concern. A punch biopsy of the spot is probably the best approach to ensure that a sufficient amount of tissue is collected. If, as is most likely, it is some form of skin infection - you will know in about 24 - 48 hours that it is NOT IBC - see a specialist who takes you seriously and unless there is some amazing technical reason that you cannot have a biopsy - then have the test and put your mind at rest - pregnancy is hard enough without these very valid concerns. Please let us know how you get on :)

Fidelia

Dx 12/1/1997, DCIS, 2cm, Stage IV, 0/5 nodes, ER+/PR+, HER2-
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Feb 20, 2010 10:38AM cyfarian wrote:

Thanks ladies.  I will def followup and demand a biopsy.  Please note that the pink spot is gone.  Where would you have them biopsy?  Where the dimples are?  They cover most of both breasts. Does a fine needle work?  Does it have to go deep, or just under the skin?

BTW, after taking 50 pics and playing with the settings, I finally found a setting that showed the dimpling.  These two shots are both of my left breast, but I have this dimpling on both breasts. 

1. Do you see it? 

2. Do you think it could be peau d'orange?  If not, what?

 Peau D'orange view 1?

Peau D'orange view 2?

p.s. will insurance pay for a 3rd opinion?  My husband was laid off and we lost our insurance, so we are on medicaid now.  thanks.

Jill

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Feb 23, 2010 11:40AM cyfarian wrote:

I just wanted to update that after returning to the first Breast Surgeon today, I am going to let this drop for now.  She said that mild edema and thickening is normal during pregnancy and refused to do a biopsy.  She said that there isn't enough information about pregnant boobs on the internet, but that she is 1000% confident that I have normal pregnant boobs and not IBC or anything else of concern.  She also said that IBC doesn't present in both boobs.  I questioned this because I know that I have seen one woman online saying that she had IBC in both boobs, but Dr. Penman said that they must have been misdiagnosed.  To note, she is the Medical Director of a very good breast cancer center and has seen many cases of IBC, so it makes me feel better. 

Thanks ladies for all of your help and sending heeling thoughts to those that need them.

Jill 

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Feb 23, 2010 11:49AM leaf wrote:

Good for you, Jill!  I'm glad you followed this to where you feel comfortable, at least for now.  I bet you have a lot more knowlege than you did before you had breast symptoms.  Best wishes for the rest of your pregnancy and the wonderful birth of a very special child.

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen