Persistent IBC symptoms, confusion and fear about what to do next.
Hi, I am re-posting as my last post went up just before the forums migrated over to their new and improved update!
I am 36F and having a lot of trouble 1) differentiating between symptoms and anxiety and 2) understanding what to do next. I fear deeply that I am just allowing IBC to progress, knowing it moves quickly, but feel quite stuck in terms of what I can do.
At the end of March, I popped a boil/pimple next to the nipple on my left breast; it was an angry one. The next day I felt my breast swelling/enlarging, which was weird because I pop ingrown hairs on around my nipples often. The following evening, almost my entire breast surrounding the nipple was bright red. An ultrasound and blood test at the ER showed no infection, only skin thickening. Another US and diagnostic mammogram a few days later at a breast cancer imaging center showed that the skin thickening was over an “anechoic area” that the radiologist felt strongly was the boil/pimple itself. I saw a breast surgeon in a private practice, and he reviewed my images, did a physical exam, and put me on Bactrim, an antibiotic. The redness dissipated and became brown/flaky over the next week. The surgeon told me this was expected and, like the radiologist and US tech, felt I had created a localized infection via the boil with my fingernails.
I still requested a punch biopsy, though the surgeon felt it was unnecessary. It was right over the section where I’d popped the boil. He had me take another round of Bactrim because he felt the biopsy itself would increase inflammation and it did seem to. In the meantime, I had a follow-up US and saw a breast oncology nurse practitioner at the university hospital for a 2nd opinion. She happens to know the breast surgeon, as he did his fellowship at the hospital. The US showed nothing had changed—still the isolated skin thickening, “persistent infection, likely a dermal cyst”—and the nurse practitioner reviewed everything and determined that I have fibrocystic breasts and what she, too, felt was an infection, showing me where the boil was on the imaging. The biopsy came back as “chronic granulamotous inflammation,” which the surgeon explained is consistent w/ infection.
However, it’s been over a month and my left breast is quite enlarged and tender. It’s huge compared to my right one. My bra leaves indentation marks and it’s just so heavy. I have residual redness where the boil & biopsy were, while the rest of the previously red area continues to fade to normal color. I’ve read a lot about IBC protocols on MD Anderson, and it explains there that anything other than complete and total resolution of symptoms indicates probable/possible IBC, and because IBC doesn’t usually show up as a mass, a negative biopsy isn’t enough to rule it out. They also say you always need more than one biopsy from the jump.
The surgeon attributes my swelling to residual inflammation, with the nurse reminding me I already have fibrocystic breasts. She is hesitant to order an MRI because she’s certain it will enhance due to the inflammation and show a false positive. She wants to wait and only maybe order an MRI, and definitely continue follow-up ultrasounds each month. (The surgeon is even more relaxed, saying an infection could take months to heal and therefore I should wait a couple months for an US.)
Does it sound like I am in good hands? How likely is IBC to present this way—almost complete resolution of skin symptoms, but one breast just staying quite large? (I know antibiotics can sometimes temporarily resolve the redness of IBC, though I haven't been on antibiotics in a little over 2 weeks.) But because there are no other symptoms—no pulling, no pore enlargement, etc—and the skin thickening is specific to where I popped something last time we checked, both the surgeon and nurse don’t feel it’s IBC. But I know how IBC often gets misdiagnosed, and I can’t let go of the fact that I read “only complete resolution” rules it out, and a visibly enlarged & uncomfortably heavy breast is not complete resolution. I did contact MD Anderson but I am in South Florida and they can’t do a telemedicine visit without a confirmed diagnosis.
I am definitely seeking both advice and comfort here, and I hope that is okay. Thank you everyone here for all you do <3
aflowerfield, I have never been diagnosed with IBC but I have a great deal of experience with inflammation caused by infection as well as immune system hypersensitivity. The infected boil and biopsy wound point towards infection which seems to have been confirmed by the positive response to Bactrim. The benign biopsy and lack of other symptoms make IBC, a relatively rare diagnosis anyhow, unlikely. Also, your second opinion consult agreed with your doctor's diagnosis.
The fact that your breast is still swollen is not surprising since the lymphatic system can go into overdrive to fight infection. I spent 5 months looking like a chipmunk with one pouch full thanks to an infected jawbone which took a long time to respond to varied antibiotics. The oral surgeon did biopsy the bone but that showed the cause was infection rather than malignancy.
I have found that it is better to let doctors hunt for the diagnosis without being fixated on a certain cause. While everyone tells you not to look for a purple dandelion in a field of yellow ones this advice still applies to those rare purple ones. When what appeared to be pneumonia did not respond to antibiotics and spread my PCP ordered a chest CT since I had all the symptoms of lung cancer. My PCP, the radiologist and a pulmonologist had no idea what it was other than to say it was more likely to be inflammation than cancer. I sent a CD of the scan to my oncology team and my RO diagnosed a rare side effect from radiation (6/10,000 chance) and sent me to a specialty pulmonologist for treatment. It was caused by out of control scarring in my lung from radiation (my over reactive immune system again) and probably wouldn't have been diagnosed as quickly if I kept looking for reassurance that it wasn't lung cancer.
As far as the indentation from your bra goes, find one that has smooth foam cups and no seams that touch the breast. I have lymphedema in my right breast from treatment and while the bra I wear does not offer as much support as I'd like it does not dig in and cause marks.
It sounds like your surgeon has a plan and is not ignoring your symptoms. In the meantime fight the infection and its aftermath by getting plenty of sleep and eating what my oral surgeon recommended to promote healing: no sugar, foods with vitamins A and C, and yogurt as well as varied probiotic supplements. If you eventually have to go for a third opinion let that doctor investigate without being pointed in a specific direction. I hope this clears up soon but sometimes you need to be patient.0
Connie, When I was diagnosed my right lung was not working at all and there was some consolidation in the left lung. I got the get your affairs in order talk; after the prednisone started working my pulmonologist told me he had feared I had one more birthday left. Thankfully I am a good responder to steroids and while my right lung is pretty damaged (with a collapsed middle lobe where the radiation portal was) the left lung has minimal scarring. The horrible cough was a problem, especially since it caused cough syncope. It's not gone despite meds that help but I can finally drive again since it's been six months since I last passed out. My PFTs are in the low 80's so all the lung expanding laps I swam over the years as a competitive swimmer are paying off (but I'm banned from pools because of the chlorine.)
My orders are no respiratory infections, no intubation and no meds that appear on pneumotox.com with an ILD warning. My pulmonologist vets anything I want to do: spend no more than 30 minutes inside with others while wearing my KN95 mask with no eating/drinking, no gyms, no church, no concerts, no crowded stadium outdoor events. I can shop at the grocery store, visit art museums (good ventilation), eat/socialize outdoors with others in uncrowded places and take public transportation if I double mask. The hardest part is spending the winter holidays alone with my husband (who lives with the same restrictions - true love) and not being able to visit with my children since they can't stay over at our house; they mask and eat on the porch when they travel five hours to visit in the summer. I'm looking forward to the better weather since I will be able to be outside and talk to people in person again. So far I have had only one exacerbation (for no apparent reason.) I know I'm not alone in having to live like this and it sure is better than the alternative.
Thanks for asking. Your biopsy date is getting closer so less time to wait.1
Maggie, my heart feels for you…0