Other possible causes for Peau d'orange?

pdxmamajama

I've been concerned about symptoms in my left breast for almost a month now. There is very clear peau d'orange all over the areola and reaching about an inch below. I do have several other symptoms (redness- not severe, itching/burning, ridges, growth, thickened skin) and have had an ultrasound, punch biopsy and a core needle biopsy- all inconclusive. I'm working on a referral to MD Anderson (I have Kaiser insurance which slows things down considerably) to hopefully get this figured out ASAP because I know that IBC is very aggressive and immediate diagnosis and treatment are essential. I should be there hopefully by the end of the week or Monday.

I will be 32 next month and I am pregnant with my second child. Of course I'm having trouble not being very anxious about it, so while I'm waiting on the Kaiser/MD Anderson transfer (biopsy slides sent, referral approved, etc.) I'm looking for any other reasonable explanation for peau d'orange and having trouble finding anything online that doesn't point to IBC. I'm happy to attach photos for reference if needed. Just within the last week and a half I've noticed the peau d'orange starting in my right areola just left of nipple, with thickened skin as well (no other symptoms.)



I so appreciate any input! I'm trying to stay calm and not get ahead of myself, any help would be great!

tae

I'm praying that you've been able to facilitate the next step at MD Anderson, or somewhere you'll get a clearer diagnosis. Have they biopsied the lymph nodes under your arm? That's how they positively dx'd my IBC. There is nothing really to biopsy in the breast - that's hit or miss, from what I've been told. Being pregnant may be clouding the picture for your dr's, I'm guessing.

I was dx'd in July, just completed 4 months of chemo on Oct. 30, bilateral with axillary lymph node dissection on Nov. 19, and just found out today that they got all the cancer from the breast, but that 13 of my 16 lymph nodes still show "cancer activity." So they've moved my radiation schedule up to the end of this week (instead of 2 weeks from now). I'm not a very happy camper, myself, and I know what it's like to be waiting for them to move on the diagnosis. Went through a similar nightmare myself in June and July. Didn't start chemo until July 26, and was dx'd on the 3rd. Aggravating, frustrating and unjust.

32 years old, pregnant with second child, the Christmas season - this has to seem overwhelming right now. I'm so empathetic for you. This should be such a happy time for you. I pray for your peace. Please post me if you need to. There aren't a lot of us out there with the IBC dx, it seems. (elliott.teri@att.net.)

pdxmamajama

Thank you for your reply Bon! I appreciate the article. I'm finding myself kind of flinch as I read things like this because I have EVERY symptom they tell you to watch out for, plus in the last week or two I've been experiencing itching in the armpit and burning / stinging pain in the breast. Thankfully I'm about 2 hours away from my diagnostic appointment at MD Anderson, so I should have a better idea of what's going on by at least the end of the week, and that is really helping my mental state.

It's been scary though, both my Kaiser surgeon and Kaiser oncologist suspect IBC (and I do have a significant family history through my maternal line, although no IBC that I'm aware of...I don't know if that matters) but couldn't nail down anything definitive through biopsy so they did think it was a good idea for me to come to MD Anderson. I just came into my 3rd trimester this week so I'm not too terribly concerned about the pregnancy or the health of the baby, I just want to make sure that my 3 year old son has me around for a long, long time. I guess I am kind of going crazy. I'll be so glad to get to this appointment today finally.

Thank you for your reply, This forum (different board) was really helpful for my mom when she was going through treatment a few years ago. I was beginning to get discouraged with no real response, but I figured that a rare cancer probably just has fewer people to be active on the board

Alo

Hi I am just wondering what happened with you pdxmamajama? I am in the 2nd trimester with my first baby and have lots of ibc symptoms (pinkness on both breasts around areolas, hot breasts, a little peau d'orange, antibiotics not working) and am scared.

Thanks

bride

hi Alo,

Mostly I'd like to second Bon's excellent posts! ( Nice going Bon!) and I would add that IBC is more treatable than Dr. Google suggests.

Please let is know how you are doing -- when I was first Dx'ed, this forum was a godsend. If you do have IBC, call the American Cancer Society and ask them to send you their medical records plastic housed filing system -- it is a great resource until you learn how to organize the huge amount of paperwork you'll be getting.

My thoughts are with you.

bride

pdxmamajama

Hi Alo,

I'm sorry I never updated! It ended up NOT being IBC. But after seeing many doctors of various specialties and many tests (blood panels, 7 biopsies, 4 ultrasounds and 2 mammograms), nobody was able to figure out what was going on with that left breast. 

MD Anderson tests came back negative for IBC and they referred me to Infectious Disease, who after a few tests and blood work referred me back to Dermatology. I pursued Infectious Disease because the MD Anderson doctor seemed to think it was important, but after I stumped ID and was sent to Dermatology I sort of quit pursuing it. I figured if it's not IBC or anything seriously urgent then I'll let it ride and figure it out later. I had a pregnancy to focus on!

The symptoms all remained consistent with IBC throughout the pregnancy, then started fading slowly after I had my baby and were mostly resolved at around 3-4 months postpartum. It's a mystery. 

My thoughts are with you right now, Alo. I have tried to leave that whole ordeal behind me, but I do know what a mess I was for those few months before getting the definitive NO from MD Anderson. Just absolutely crawling out of my skin with fear and anxiety. Do push and advocate for yourself. Do whatever you have to do to get someone who is well versed in IBC to get your biopsies and testing done. Do not allow someone to casually dismiss your concerns. This board is a great resource.

Let us know how it turns out for you. It's terrifying to think that you could have this extremely rare cancer, but try to keep in mind that it is EXTREMELY RARE. Chances are good that it is something else. Keep that hope in your pocket while you pursue a definitive diagnosis, then you can cross that bridge when you come to it. 

soos_arabella

Hi mommys,

I have the same issue...30 years old, first pregnancy, 20 weeks into is.. since a month, red, swollen, hot, different left breast, areola much larger, different colour, and now this orange peel looking skin, although bit red only, bur aerola still different in colour (yellowish)..I`m going crazy... Had two ultrasounds, one random biopsy, negative all.. wanted to performe mammogram, but refused it, now they offered MRI with contrast..will refuse it.. these are not safe, as there are not enough studies during pregnancy..and breasts are dense due to age and pregnancy, so they are not conclusive at all..

Some...ideas? ........

Thanks, Bella.

Moderators

Dear soos_arabella, it is so hard to balance diagnostic tests with protecting your child and we are sorry you have this stress. At least all the tests are clear, and that is great, as they indicate no nasties.

We hope your pregnancy goes well and it all clears up, as others have.

The Mods

Meadow

Soos, so sorry you have to deal with this during your pregnancy. I am very glad to hear you have had a biopsy, and it was negative, plus two clean ultrasounds. Are the experts saying the changes are related to the pregnancy? I would trust the clean tests, focus on baby. Thats good medicine, yes?

Randumb88

i am also looking for something else that can cause the pitting, but just like you have no luck, it's pretty scary to think about. I had an ultrasound but the dr said I need to see a skin specialist... I also have the rash, discharge and thickened skin... hang in there... if I hear anything I'll write you, if you can do the same I'd appreciate it... good luck

Cottonmom

So I realize this post is quite old but I wanted to respond. I am 50 y/o and have an almost 4 y/o. I noticed Peau d’orange on my breast sometime after delivering my son (I can’t even remember When I first noticed it). I never had any other symptoms of IBC, such as redness, itching or swelling. However, I was diagnosed with IDC in that same breast and had a lumpectomy and now radiation. When I mention the Peau d’orange to my doctors they tell me it’s related to my surgery and seem skeptical that it existed before, but trust me it did. They assure me I don’t have IBC, and that if I did I would have seen skin changes by now, months later (of course I do have some redness now but that is likely related to congestion and Seroma after surgery. Still, in the back of my mind I have some worry. Anyway, I have scoured the Internet looking for reasons of Peau d’orange Other than IBC, and I can’t find any. However, after reading these posts, I can’t help but wonder if breast changes during pregnancy and breastfeeding could cause Peau D’Orange? I am told it occurs as a result of a blockage of the lymphatics in the dermal layer of the skin. So, after reading these posts, I wonder if this could occur as a result of breast size expanding so much surrounding pregnancy? Just a thought. Also, for those who had it during pregnancy unrelated to iBC, did the peau d’orange Persist afterward?