Do these pictures suggest IBC? BS refusing to do biopsy

cyfarian

Hi.  I am 31 and 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 normal 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 very mild pitting.  Very visible in natural light, but UV light obliterates the shadows of the dimples 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.  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?

Note: mods: sorry for cross posting in two forums...saw the IBC forum after I saw the not dxed forum.  Please feel free to delete my post in the not dxed forum.

dlb823

cyfarian ~ I  don't know if anyone can venture an opinion from a photo or two, but I am curious about the "breast surgeons" you saw.  Did you go to a major cancer center and see a breast (only) surgeon/specialist (as opposed to a general surgeon who does breast surgery)?  If so, and if you've actually seen 2 of them, what did they each say is causing your symptoms?     Deanna

cyfarian

Hi!  Yup, went to a cancer center.  Saw actual breast surgeons. 

1st doc said pink spot was probably folliculitis.  Went home and googled it and follicullitis looks like a zit.  Mine looked nothing like a zit.  No lump...just red and tender.  She said dimpling is normal with pregnancy, but I can't find a website anywhere to explain this.

2nd doc said pregnancy could cause the nipple getting larger.  Pain could be from fibrous breasts (I think that is what he said...don't remember the actual term...the pain follows my lymph node area pretty closely).  EDIT: he said pink spot could have been an insect bite.

Mandy1313

Hi Cyfarian!

I can't tell whether you have IBC from the photos and it is possible that this is all some kind of pregnancy change. My sister had IBC that was missed by a radiation oncologist, a hematological oncologist and two different breast surgeons, --one at a major cancer center. Many doctors have not actually seen a case of IBC so they go by the book description and if you do not fit that pattern, they dismiss it. This caused my sister's treatment to be postponed by over 18 months from when she first noticed what looked like a "sunburned breast." She was told it was a spider bite, a mastitis, an allergic reaction to her laundry detergent.....no one actually even considered IBC.

  When she finally consulted at Dana Farber in Boston, the oncologist she saw immediately thought it was IBC and did a biopsy, which was pretty non invasive. She went in, had the biopsy done under local, and we both went back to the hotel and had a normal day...well as normal as it could have been under the circumstances.  

 So I would suggest that if you have concerns, you make sure that you are followed up on and not dismissed.  Perhaps this is a fairly common breast change during pregnancy--so let them explain that to you and tell you what it is.

Sending you a warm hug.

Mandy

cyfarian

Mandy, thanks for the response.  How is your sister doing?  I hate to hear of such a delayed diagnosis.

My sarcoid diagnosis took 4 years...thankfully sarcoid isn't immediately life threatening, so while the delay means that my disease progressed unchecked for years, it isn't the worst thing ever.  

Thanks for your thoughts Mandy. 

Jill

dlb823

Jill, I wonder if you could go back to either of those surgeons (assuming you at least liked one of them) and specifically request/demand a punch test, the type of skin biopsy used to rule out IBC?  Perhaps they would at least agree to that to give you peace of mind.  If not, maybe you need to seek a 3rd opinion.  Perhaps someone with IBC here can even suggest a breast surgeon who is extremely knowledgeable in IBC based on your location.    Deanna

cheers247

Hello,  I think you should certanily get another opinion, and demand a biopsy.  One of the HUGE problems with IBC is the delay's in diagnosis due to the sometimes vague symptoms.  This is particulary true for women who are pregnant and breastfeeding, as the breast goes through changes during this time.  Have you had a mammogram?  They are not diagnostic for IBC, and there is usually NO lump with IBC, but on many mammo's there is skin thickening, because of the inflammation caused by the cancer invading the dermal lymphatics.  An MRI and biopsy will be diagnostic.  IBC should be ruled out as a cause of your symptoms.  You can read my story at:  www.caringbridge.org/visit/jessicam

Much Love!!  Jessica

Mandy1313

The doctor who finallly diagnosed my sister was Lyndsay Harris who is now at Yale. (I just googled her).  Jill, I don't know where you live so I have no idea whether a trip to Yale would be possible. But you might call her office and see who they would suggest. She also got my sister into a herceptin trial in the days when that drug was just starting to be used. She would have the herceptin shipped to my sister's onc in Florida and so my sister was able to have treatments at home. 

idaho

Don;t ask.... DEMAND a biopsy.. go somewhere else if you have to . Get a skin punch biopsy done.   Wishing you peace and health.   Tami

cyfarian

Thanks ladies.  I will demand a biopsy.  I am in Delaware.  Does anyone know of someone moderately close?  My husband was laid off a few months ago and we lost insurance, so we are on Delaware Medicaid.  I don't know if medicaid coverage will cross state lines or not.

Please note, the pink spot is gone.  Where would you get the biopsy?  Where the dimples are?  They cover a large portion of both breasts.  Fine needle?  Core?  Skin punch if there is no rash?  Do the needle biopsies go just under the skin or deep into the breast?  How many do they do?

BTW...after taking 50 pics and playing with every setting on my camera, I finally have two good shots of the dimples to show you.  Please give me your honest opinion of them.  My husband sees them, but thinks I am obsessing over nothing.  These are both shots of my left breast.

P'eau D'orange? view 1

Peau D'orange? view 2

germangal

Not knowing where in Delaware you are, or able to answer your insurance question, I know that I would head to Fox Chase Cancer Center in Philadelphia. The doctors there know IBC .... barring that, then you want a teaching medical center such as U-Penn .... IBC is still not well known or recognized by many doctors.

cyfarian

I just wanted to bump this to see if anyone could take a look at the new pictures.

Here are the links again:

Peau D'orange? view 1

Peau D'Orange? view 2

kwhite, thanks.  I put in a call to Fox Chase.  I got their voicemail.  I asked my mom (who had BC a decade ago) and she said that she couldn't get into Fox Chase because the appt times were so far out, but I will def follow with them.  

For anyone else in Delaware, I also called the cancer helpline (800-464-HELP) and they gave me some good numbers...

Christiana Dr Referral: 302-428-4100

American Cancer Society Patient Advocacy Program: 800-227-2345

Newark Cancer Care Conn.  302-266-8050

I called the dr referral to find doctors that specialize in inflammatory breast cancer.  Unfortunately, the closest they could give me was doctors that specialized in general breast cancer, so I have the list and have been calling to see if anyone has experience with IBC.

edited to add links to latest post.

apple

I've looked at your pictures.. and they could be early p'eau Du Orange.. there are so few pictures on the net, and most are far worse than your dimpling.   I think are wise to pursue this tho.  That said, boobs do some weird things during pregnancy.  wishing you luck.

cyfarian

Holy crap.  I just read in two articles online that sarcoidosis (which I have) can cause peau d'orange.  It said to def rule out IBC as cause because they can mimic each other.  Sarcoid is a multi-organ disease and I have only had it confirmed in my lungs.  So maybe my sarcoid has moved onto my lymph nodes or breasts.  Here's to hoping.  While I don't want my sarcoid to get worse, it is the lesser of the two evils! I have calls into my pulmonologists now.

KWhite...fox chase won't take delaware medicaid.  I called, but thanks for the suggestion.

AmyIsStrong

Cyn -

I am in Delaware and get all my treatments at the Helen Graham Cancer Center at Christiana Hospital. It is nationally recognized and extremely progressive. I have been very happy with them. I can give you the names of breast surgeon or oncologists there, but they are all good. If you dont' want to, or can't go to Philadelphia, this is the place to go.  PM me if you want more info.

Amy

cyfarian

Thanks Amy...I sent you a PM this morning.

I just want to update...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.  I have absolutely obsessed over this and although my trust in doctors is shaky, I am gonna go insane if I don't stop torturing myself into a full blown diagnosis when no doctors agree.

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

Jill

dlb823

Jill ~ Thanks for updating us.  Your breast surgeon sounds very knowledgeable, and her explanation entirely correct -- especially if you have identical symptoms in both breasts.  I'm also sure she's aware of the consequences of a delayed dx for this type of bc, so would want to do everything to rule it out if she thought there was even the slimmest chance it was IBC.  

You did the right thing by going back to her, and I honestly think you can rest assured that her assessment is accurate.  Take care ~  Deanna

Betsk

I agree with Bonnie. My mother definitely has IBC in both breasts. It does happen, although I certainly hope not to you. All the best to you!

cyfarian

Bonnie & Betsk,

I think ruling out bilateral IBC from ever happening is dangerous for a doctor to do and to say that it can't or hasn't happened is exactly how a doctor might miss a diagnosis in the future.  But that being said, I can't dwell on it, because if I start to question her confidence too much, then I am right back where I started...which is a panic stricken mess.  She has looked at my boobs twice and has seen quite a bit of IBC as the medical director of a large breast cancer hospital.  I have had 3 appts with breast surgeons and each time was refused a biopsy. 

If I pursue this further, then I think my husband will ship me to the insane asylum.  I believe that bilateral IBC is possible and has happened, but am just taking in the numbers that IBC is super rare and bilateral presentation is even more rare.  The numbers are in my favor, and the doctor feels my symptoms are normal pregnancy sypmtoms, so I am just going to monitor my boobs and if I see changes then I will reevaluate.  I do have an appt with a dermatologist soon to have a mole removed, and I will definitely flash her my boobs to see if she has seen such skin changes in pregnant women. She may be interested in a skin biopsy, which I would certainly allow her to do.

Thanks so much for your help ladies.  I really appreciate it.

jaimo

I had IBC after the birth of my second daughter, and from day one of breast feeding I had a sharp burning pain in my breast that the doc. said was nothing! It took them 3 months to diagnose  me and I was a stage IV, mets to liver. Luckly after 9 chemo, a mastectomy, 25 radation, and 5 years of tamoxifen, I am 14 months cancer FREE! Be stern with your doctors!! My family doctor almost cost me my life, when all he had to do was biopsy me sooner! Oh I did get a lump aswell with my IBC. Please make them biopsy you, thats all it takes! It take 5 minutes. Aswell my left breast was very thick, and I had the orange like dimples on my breast.

tkw50

Why don't you want a biopsy?  That does not make any sense to me.  Get a biopsy.  Early diagnosis is the key.  I had pinkness to skin in a larger area, but not that intense.  I went misdaignosed for two months.  Here I am nine years later.  Get a biopsy!!!!!