Inconsistent diagnosis from Breast Specialist and ID.
UI posted this in the Waiting for Test Results, but am hoping I may get some suggestions/advice/feedback here.
I am a 33 yr old mother to a 10 year old. No other children, pregnancies, etc.
Basic info/timeline:
April-noticed tenderness in left breast with a very small discharge. Went to my GP and they did hormonal level/testing and all were normal.
Mid June- went on vacation. Noticed tenderness in left breast, some inflammation, etc.
July- went to OB/GYN for breast exam when returning. More swelling/inflammation. She referred for Unilateral Mammo/US due to what she called "small mass". Both were normal. She referred to a general surgeon who said he felt it was an estrogen imbalance. Went for second opinion to a general surgeon, who also specializes in breasts (cancer, disease, etc.). He also said estrogen imbalance. No need for mammo til 40. Said normal with cycles and to take Evening Primrose Oil.
End of July- breast continued to get worse- swollen, inflamed, hard thickening area that began to grow to be almost half my breast, red, etc. Family beach vacation began.
Beginning of August- came home from vacation because inflammation, skin, redness, etc. all continued to worsen. Went back to breast doc who did US and said we needed to biopsy (core needle vacuum assisted). Said chronic mastitis due to possible bacteria in breast (maybe because of shaving). Put me on oral antibiotics. Biopsy results said Benign Chronic Mastitis. 9 days in on antibiotics, everything still worsening. skin changing in color and texture. Back to dr after giving antibiotics 9 days. Another US w fine needle aspiration (very small amount of what looked like puss). Put in hospital for 5 days on IV antibiotics w/ Infectious Disease consult. Another US w nothing to aspirate. Blood tests for infection normal. Culture not growing bacteria. Breast same. Discharged and have now been home with PICC line and IV antibiotics for almost 2 weeks w/ Breast dr and ID dr. Breast continues to get worse- stabbing pain, burning, itching, skin dimpling, redness spreading, etc. Went to breast dr Monday- not worried about IBC. Still 99.9% positive mastitis and said long road ahead w/ antibiotics. Went to ID dr yesterday who says NOT infection. Wants to take me off antibiotics. He thinks it is a hematoma due to bleeding from core biopsy (even though problem was present prior to and reason core biopsy done).
Going next Thursday to another Breast Center that deals with only breast disease, breast cancer, etc. I asked both my current dr about PETscan and skin puncture biopsy. Neither want to do now. They want to wait another 2-3 weeks to see how this "clears up". Worried about added risk of infection or hematoma (depending on which one you ask) with further samples. Feeling super frustrated, worried, overwhelmed, and honestly annoyed.
Any recommendations or suggestions for how to precede from here would be wonderful. I want to be able to trust my dr and both are very well thought of in our city, but they are not agreeing at this point, which is concerning.
thanks
Comments
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Hi,
I went through a scare last year. My only opinion. Get yourself to an IBC clinic (ladies on this forum will know more) but MD Anderson in Texas would be the right place to get answers. It might be far away but peace of mind is everything. I had chronic mastitis which I learnt afterwards is another name for fibrocystic inflammation.. and I had burning in armpits, skin thickness, etc. lymph fluid obstruction and REM (a weird skin condition with mucin)
I still don't really know what happened but every test so far as been negative for cancer so after 13.5 months, I guess I would be half dead. I started to have really bad headaches and MRI showed white matter intensities and freaked this could be mets, but the neurologist thought I was crazy, so I'm guessing some things go crazy and we never know what.
Keep going until you find answers that suit you.
Best
Alicki
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Hi,
Try asking for an MRI + core biopsy + punch biopsy (8mm). My 4mm biopsies showed nothing. the 8mm one showed REM, Reticular Erythemous Mucinous or something like that. An 8mm biopsy goes deeper.
Other ladies on this forum have more experience than I did with biospies. I will let them respond.
Best
Alicki
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I would find the nearest cancer near you and insist on a mamo (think you have not had one?) find a breast surgeon you are comfortable with and who will listen to you!
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Thanks ladies!
I did already have a normal Mammo in July. I actually just spoke w/ my dr and I go tomorrow for the skin punch biopsy. I will advocate for the 8mm. My blood tests for organ functions apparently show an issue with my liver function, which is why they are now recommending the skin biopsy. May be a result of antibiotics, infections, or something else, but neither of them were expecting this. Now the dr is stung its still chronic mastitis, but not bacteria...it's viral.
At least it's a step in the right direction before I go to Duke next Thursday.
Thanks and continued advice appreciated
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Hello,
Don't worry too much about the liver fuction tests. Mine went strange too but the MRI never showed anything. It was just due to stress. THe tests went back to normal later, this can happen. Glad you are going to dukes. You can even ask them for an incisional biopsy, (it gets even more of the area) and remember it can be anything. My lymph nodes even were swollen but innocent looking (we checked them about 10 times in a year). Don't do what I did, I got so frustrated with the whole 'wait and see' that I went in for a breast reduction which created more problems. The pathology came back as no IBC (the pathologist even marked that on his report!) but fibrocystic changes and hyperplasia and skin thickness with any underlying cyto atypia.
Then I had cysts on abdominal wall and kidney which took some time to clear as cysts and now headaches which led me to doing and MRI. I think I took my experience way out of proprotion because even a PET scan in the 5 months after it started did not reassure me. So please do not do the same as me. Find doctors you can trust and follow their advice. The anxiety lkilled me and I'm still healing from it.
Well good luck!
Alicki
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