IBC: initial signs

Mps1217

Hello!

I apologize if this post is in the wrong area. I’m new and looking for advice from those diagnosed with IBC.

I am 62yo. I was DX with ILC in December and had my lumpectomy surgery with SNB on January 24, 2018. During the surgery, the surgeon also found LCIS and removed it. A week later, I received a fantastic report of "clear margins and no lymph node involvement." Also, I only needed radiation, no chemo. I was told my risk of lymphedema was low because I only had two SN dissected. I was staged at Stage IIA— so pretty wonderful news!

Fast forward, less than two months later, I was about to start radiation when I woke up with pink skin and peau d'orange on the breast I had surgery on. I couldn't get radiation until my breast surgeon checked it out. She did an ultrasound and felt it was "benign infectious inflammatory process/ possible lymphedema in breast area." There was skin thickening but no abnormal mass or fluid collection. I never received a biopsy to check for possible IBC. I was placed on antibiotics and shortly began radiation. That was now 3 weeks ago and the symptoms still persist; however, my skin is now red (likely from radiation). The radiation oncologists believes it must be lymphedema of the chest, so I will be seeing a LE specialist soon. Though, I had felt that if it was lyphedema then I should have had fluid collection in my US. I still have two more weeks of radiation, but I plan to make an appointment with my breast surgeon again to recheck the peau d'orange. I am also going to ask for a punch biopsy to check for IBC— though I'm nervous radiation could impact the results. My BS never even suggested IBC, but Dr. Google did.

My first question is, has anyone had IBC present shortly after a lumpectomy for another cancer type (specifically ILC)? Did you have pink/ red skin and peau d'orange? I currently have red skin, peau d'orange, and swelling. I also have some skin flaking but I believe that is from radiation. I do not feel like my skin is hot, tender, or hard; though the ultrasound did show skin thickening inside the breast. I also do not have any pain. My nipple texture is different (not inverted) but again that could be from radiation. My current symptoms are very similar to some symptoms of IBC, so I'm making myself sick with worry.

Again, I apologize if this is the wrong forum. I do want to hear responses from those diagnosed with IBC— or anyone that has had similar skin problems after a lumpectomy.

Thanks! 🙏🏼

Traveltext

Mps1217, welcome to the forum. Dr Google refers all searchers here because the pages are so well indexed. I was IBC from the get go and have answered many IBC questions here over the past few years. So, I'm not your preferred responder, but here goes.

First, you appear to have a good handle on this topic and a good medical team. Diagnosing IBC after rads have started would only be possible with a punch biopsy which I'd imagine your team would be loathe to do right now. I really believe an infection leading to chest lymphedema is the likely diagnosis and IBC a very, very low probability. Keep us posted and good luck with your continuing treatment.

bluepearl

Stuff comes along just to scare the hell out us, I think. I agree with TravelText. It is unlikely IBC and if your oncologist thought there was even a possibility they would have been on it like white on rice. Lots of things have similar symptoms. Dr. Google can make you depressed and anxiety ridden. Try to stop. It is hard to do while we wait and wait and that screen beckons us to look for answers and leads us down the garden path right into hell sometimes. You will get through this and I am wishing you so many wonderful years ahead, well and happy!

Mps1217

Thank you both for responding! Your responses have provided me with much comfort. I will certainly keep you all updated when I learn more. When I finish radiation, if the peau d’orange hasn’t disappeared, I’m going to ask for a punch biopsy. I think that will just provide me with some peace of mind. I might still try and see my breast surgeon before my radiation ends, just because the peau d’orange is worse than when I got my US 3 weeks ago. If it is infected, then she might have to prescribe me a different kind of antibiotic (since the initial kind didn’t work). I wish it was possible to biopsy now, but I wouldn’t want to stop radiation treatment early.

Thanks again for responses! I’ll let everyone know more when I know more 😊

Katiejane777

MOS1217 I had exactly the same issue just before Rads. Pink skin, peau de orange, welts. I panicked thinking I had IBC and got everyman and his dog to check my boob. Of course Rads made it worse. I was already seeing a LE Therapist and she thought it might just be lymph collecting and having trouble shifting after my surgery. My whole breast went pink straight away after my second Rads treatment. My daughter is a Radiation Therapist and she said I didn’t have enough radiation to cause a reaction at that stage of treatment. I got through rads With a very pink, dimply welty boob. The LE made a huge difference and I still I daily lymphatic drainage massage. I still have dimply skin but it has faded to the lightest pink and looks much better 2 months post Rads. Everything I read led me to believe I had IBC except it was all post surgery swelling and lymph drainage issues. I hope this helps.

Mps1217

Like the other responses, your post has really helped ease my worries! It is nice to hear that someone else has shared my exact issues. I’m still going to ask for a punch biopsy when radiation is completed, but your response have certainly given me some peace of mind. I never thought I’d be hoping for lymphedema but here I am haha

Thanks for sharing your experience

Katiejane777

Mps1217 Just to reassure you further I actually haven’t been diagnosed with lymphodema I have just been seeing a LE Therapist to help me with shifting the lymph and relieving my symptoms.

Mps1217

Thanks for the reply! It is definitely reassuring hearing that you have nearly identical symptoms as me and you only had SNB. I was told repeatedly that lyphedema was only 0-7% chance with only having two sentinel nodes dissected, but it clearly is possible. I guess I might just be in that low percentage group. I also had ILC which is only 10% of BC— so I guess I’m just extra unique haha

Thanks again for responding!