Fearing IBC post double mastectomy

Brightsky

So frustrated that I cannot make sense of my body anymore. The internet has failed to give me answers so I hope someone here can help me. I am almost 3 years out from TNBC dx. I had a double mastectomy with reconstruction. About 8 weeks ago I developed a rash on my left breast (cancer side). It is below my mastectomy scar. I emailed MO and she said to come in. Then the rash on my breast started to improve but I developed a generalized rash that would intermittently burn intensely down the backs of my arms, back, sides and hips. So I decided to see a dermatologist instead of MO. I have a job that is difficult to leave work for things, so I can't just go to the doctor whenever I like. At this point rash on breast had dried out and was scaly (I know, gross). She didn't know what it was but said it could be nothing, or could be a connective tissue disease. Prescribed meds. Now, generalized rash has improved but rash is back on breast and next to it there seems to be a discolored area. So, basically the area below my mastectomy scar has a rash that will not resolve and a faintly discolored area next to it. As it would happen, this is the same area that my surgical pathology revealed “another lesion suspicious for tumor" that was bigger than my known tumor. This would make me stage 2 with multi focal disease. However, I was not officially re-staged because I had a pCR to neo-adjuvant chemo. I see my MO in July but I'm wondering if I need to email her back and try to see her sooner which I hate to do because I know she is VERY busy. Does this sound like it could be IBC?

sbelizabeth

Brightsky, I'm sorry you're going through this new worry. For those who were diagnosed with IBC, the presenting signs and symptoms seem to quite diverse. My IBC "features" were a reddened area about 3 inches in diameter, with peau d'orange texture within it.

I'd be very surprised if anyone here advises against seeing your MO ASAP. Sure she's busy. Most doctors are. Email or pick up the phone, maybe both. July is a long time from now, and you're every bit as important as the patients she's seeing tomorrow.

Brightsky

Thank you sbelizabeth. You are completely right, I need to see my MO ASAP but I’m really hemmed in at work. We are short because my coworker is out recovering from surgery. I see the dermatologist again on May 25th. I guess the thing I’m trying to figure out is how IBC looks post mastectomy. The skin is already thin and stretched over my implant. I don’t know if it would present the same way as it would in regular breast tissue. Again, only my MO or surgeon may know the answer to this. Thank you for your advice.

buttonsmachine

I don't want to scare you, but I had skin metastasis of my original IDC that presented as something that looked like a redder "rash" on my breast near the mastectomy scar. Mine was different than yours sounds, if that's any consolation. Still, skin metastasis can spread distantly very quickly and you should definitely see your MO asap. Sorry you're dealing with this. Hope you get some answers soon.

Peacetoallcuzweneedit

I had a rash - splotched not raised rash that appeared about two weeks ago - one splotch on my left breast and then a large multi splotch area that appeared on my left underarm - this side was my DCIS + SNB side. (also double mx and implants in Nov) I took pics and emailed my breast surgeon immediately. It resolved within three days and she told me to rest, rest, rest. She said- she did not think I had anything to worry about but it might be an allergic reaction or stress.... does any of your rash completely resolve or is it all just lingering? Is it warm to touch?

Brightsky

Thanks everyone for sharing your experiences. The rash on my breast just seems to linger. No worse, no better, which I guess is encouraging. The rash on my body no longer burns but my skin just has this faint pinkness to it. It’s noticeable on the undersides of my forearms where my skin is very pale. It’s more obvious on the back of hips/sides. This rash on my breast is different from what is on my body it is more textured. It’s so annoying and I’m just like of all the places to get a weird rash, why on my breast with former cancer?? Then why the generalized rash which just confuses the situation?? Sorry for the last two rhetorical/venting questions... this has been going on for about 8 weeks.

amarantha

Brightsky I hope you get to your oncologist soon, and that you get some biopsies to rule out skin mets. Courage ! please keep us posted.

Brightsky

Just wanted to post an update. My rash is now very faint but I still get a weird sensation like pulling or skin stretching in that area. I can feel something that might possibly be a lymph node in my left axilla right next to my implant. I am still trying to hold out for my July appointment for a couple of reasons. I had a really difficult time getting diagnosed the first time around. I had weird symptoms (crushing fatigue, night sweats, low grade temp, and weight loss). I had a checkup and a normal 3-D mammogram 9 months before diagnosis. My PCP at the time (a resident) kept telling me I had an autoimmune disorder and made me feel like a crazy person and actually rolled her eyes at me. Eventually I got a PET scan to look for lymphoma which found my tumor. In light of this I’m hesitant to see my doctor unless something is really obvious. I just can’t deal with the “you are crazy, there is nothing wrong with you” treatment although my onc has never treated me that way, and I go to all of my follow-up appointments, the experience has left me reluctant to seek help. Thanks for all of your support and good advice!