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Spreading Rashes

CL91
CL91 Member Posts: 4
edited August 2022 in Not Diagnosed But Worried

Disclaimer - I'm not sure if this should go here or in the IBC thread. If it should be in the IBC thread please let me know and I'll delete and re-post <3

Hi everyone. It's been several years since I've been here. The last few times it was about lumps in both breasts that were all biopsied and diagnosed as fibroadenomas. Well, on June 13th, I had yet another surgery to remove fibroadenomas again. They removed 3 fibroadenomas, and a 4th mass they hadn't seen on imaging. This mass turned out to be Atypical Lobular Hyperplasia. I was informed within a week and transferred to a high-risk Physician Assistant at the breast specialist office. We agreed to do increased, yearly monitoring, and I THOUGHT that was that.

Well, on July 3rd, an angry, red rash appeared on my right breast, close to the incision point from the surgery. Since there, I have tried treating it with hydrocortisone, moisturizing lotions, Allegra allergy relief, and Aquaphor healing ointment. It's happened 5 times now that the rash has gone away ALMOST completely, but then fights through the treatments and comes back worse than before. I went back to the breast specialist after a couple of these failed and she said it looked like an allergic reaction to the surgical glue or strips, and told me to stop using hydrocortisone, take an antihistamine, and use the Aquaphor. The rash has ALMOST gone away multiple times, but it always comes back. Now, it's spread out to cover about twice the area is covered before, and it is still spreading, and the skin affected by the rash is getting thicker. The redness has faded to more of a dull orange color. But now I have another rashy spot on the same breast in another place, and that one is spreading too. I tried to tell the breast specialist I was concerned about this and she told me any further investigation was unnecessary - she sent me to a dermatologist instead. I have that appointment on Thursday but I'm so, so worried. I know I am at high risk for developing cancer, and surgery is a well-known trigger for new cancer spread or development. I'm not convinced this is just contact dermatitis because of it's persistence against all treatment, and I'm concerned the dermatologist won't know enough about IBC to take it seriously.

I just feel like the breast specialist didn't really take this rash seriously just because I had surgery a couple months ago. I know it would be rare for this to turn out to be IBC but it's not impossible. I found several case studies online where the exact same thing happened - a woman had a breast surgery and within weeks developed a rash near the surgery site that turned out to be IBC. And with how fast IBC moves, every day of delay in diagnosis makes the prognosis worse. Any advice? Has anyone had a dermatologist recognize IBC when they saw it? I want to demand a biopsy of the rash, but I've seen people say skin biopsies missed their IBC, and the breast specialist refused to do one twice because she insists it isn't necessary.

Comments

  • lw422
    lw422 Member Posts: 1,399
    edited August 2022

    I'm sorry you're having such a hard time with that scary rash. I was diagnosed with IBC early last year so I know how anxious you must be. If you go to a reputable dermatologist, they should recognize the "look" of IBC and proceed with a skin punch biopsy of the area. Hopefully the derm will be able to put your mind at rest.

  • quietgirl
    quietgirl Member Posts: 165
    edited August 2022

    I know this isnt going to help much but I’m going to give an actual skin possibility Pityriasis rosea https://www.mayoclinic.org/diseases-conditions/pityriasis-rosea/symptoms-causes/syc-20376405 I know it says usually from 10 to 35 but I got it in my late 40. It started really small and spreads and pretty much has to run it’s course. I would definitely express my concerns to the dermatologist about it being IBC related. I know it’s scary to be in a position where you feel like your concerns aren’t being heard and I’m not trying to diagnosis you with a annoying rash when it might be something more but only wanted to share my experiences with it since the spread is similar to what you are experiencing. Hoping you get some answers on Thursday so you can have a plan and hopefully some peace of mind as well.

  • CL91
    CL91 Member Posts: 4
    edited August 2022

    Thanks, lw422. I'm really, really desperate for SOME kind of confirmation as to what the rash really is. It drives me crazy that the breast specialist wanted to just treat it blindly without actually knowing what it was first. And I hope the dermatologist on Thursday will agree that this is odd behavior for contact dermatitis and will agree to a biopsy. I think it was you I've seen say on these forums that IBC can be missed on biopsy and diagnosed anyway due to visible symptoms anyway... May I ask how long it took you to get diagnosed? From when symptoms started to when they said "it's IBC"? I'm almost 2 months out from symptom onset..

    quietgirl, I did read up a bit on Pityriasis Rosea when this first started. I'm not sure, but I think what I have is too different from the pictures I'm seeing online. Oddly enough, when it started, it DID look like contact dermatitis, but like I said it's persisted through all the treatments that should have worked on it, and now it's twice the size it was and continuing to spread. If I had more of these spots over my trunk by now I'd be hopeful about a P.R. diagnosis. but it's still just the one plus the additional spot on the same breast. Thank you for the suggestion, though. And I guess it's always possible it could just be an odd presentation of P.R. - the body IS pretty weird.

  • lw422
    lw422 Member Posts: 1,399
    edited August 2022

    cl91--I had a really fast diagnosis. I noticed a pink "bruise" about the size of a quarter on top of my breast. When it didn't turn color or fade after a week I called my PCP (a woman). She took one look and wrote orders for a diagnostic mammogram and ultrasound; I was able to get into MD Anderson within a week. I had the mammo and US; they also did a needle biopsy at the same time and I was told I had cancer that same day. Within 2 weeks I had a port installed and chemo started. So from PCP visit to treatment started was about a month.

    IBC is so rare that I have confidence that you're going to be fine. Hopefully the derm will be able to identify the rash since that's what they do! I know how nerve wracking it is to wait and worry. As QuietGirl said, be sure to stress your concern to the doctor. So sorry you're going through this.

  • CL91
    CL91 Member Posts: 4
    edited August 2022

    Thanks, lw422. I really hope so too. I'm glad you were surrounded by professionals who listened and were proactive - and at MD Anderson! My best friend's mom has a really rare cancer and was treated at MDA about 8 years ago. She's been in remission ever since. They were absolutely wonderful for her so I know you have to be in great hands!

  • Sher1263
    Sher1263 Member Posts: 17
    edited August 2022

    sorry you are having issues. I had a rash like area between my breast..it would come and go. Derm did a punch biopsy and determined it was Granuloma Annular, a benign skin condition. Gave me some strong steroid cream that takes care of any flares. Do see a dermatologist to get the punch biopsy. Good luc