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Jul 24, 2021 06:53AM
@Life5 I hope that you continue to seek a diagnosis. I started having flaky skin/bleeding/inversion in Feb or March of 2020. I went to PCP and they referred me to breast specialist. Specialist said we should try cortisone. I mentioned Pagets (had googled it). She thought it was unlikely but agreed to punch biopsy. That biopsy came back negative & and she said to use cortisone. I did and it didn't help. I figured this was just something I have to live with. I hate going to doctors and when COVID quarantine happened, I stayed home like many people.
Fast forward a year later- April 2021, I still have the problem on left nipple (right is normal) -- I also notice a small hard little ball/knot (like the size of a small stud earring) just to the right of my left nipple probably 3 inches deep. I and went back to specialist. She said she didn't want to biopsy again, said the knot I felt seemed more like a "shelf" to her? Not sure if that's a surgical breast composition term, but that's what she said. She referred me to a dermatologist and prescribed RX Cortisone. I tried the RX cortisone- made no difference-- did not go to dermatologist.
I knew that something was very wrong w/ left nipple. I even told the breast specialist that I felt like my nipple was dying.
Went for annual mammogram in June (later than I should have) they did regular mammo and 3D mammo and Ultrasound on site. Followed up by breast biopsies and MRI. It turns out that I have DCIS 7CM, IDC 1.5cm, IDC 0.9 CM and IDC 0.7 CM- with nipple involvement on left-- none of which showed up on my late 2019 mammogram. They have not re-biopsied my nipple to test for pagets, but doctors say at this point it wouldn't impact my treatment at this point anyway, since I am having a double mastectomy and chemo (ER+/PR+/HR2+).
I found an NIH paper that describes best practices for pagets of breast. Endocrine testing is important as well as MRI- they also recommend a wedge biopsy instead of a punch. This type of cancer is often misdiagnosed and disregarded. It is also very rare. So, odds of having it are low.
I have shared my story with anyone who will listen. I wish I could share photos as I have taken them all along this journey. I googled for images several times during that year as my situation seemed to worsen and I think there should be more out there to help us better advocate for ourselves. The nurse navigator asked if they could take photos for educational purposes and I agreed. Not sure when/where those will show up- but I hope they make it to breast doctors in study + gen pop for all I care. Outcomes for pagets when there is a palpable mass involved is worse than outcomes if they catch the pagets before there is an underlying mass. I still get angry when I think about the lack of concern from the specialist all those months ago.
Look for medical papers on Pagets of the breast online and bring your research paper to your doc-- ask for whatever medical/surgical/pathology tests the paper recommends. I hope that in your case, it is dermatitis or some other benign diagnosis. Please keep this group updated if you get any news. Best of luck!!
6/15/2021, DCIS, Left, 6cm+, Stage 0, Grade 2
6/15/2021, IDC/Paget's, Left, 1cm, Stage IIA, Grade 3, 1/1 nodes, ER+/PR-, HER2+ (FISH)
7/27/2021 Mastectomy: Left; Prophylactic mastectomy: Right