Unusual pathology after TWO mastectomies at age 31...has anyone had pathology second opinion shed light on their case?
Hi everyone,
I'm hoping to hear from anyone who has had a difficult pathology case or whose diagnosis changed after an expert second opinion. I'm not looking for reassurance or to dispute my diagnosis but I genuinely want to know if anyone has experienced something similar.
I was diagnosed with breast cancer at age 31 after finding a palpable lump. My course since then has been unusual, and I'm struggling to reconcile all of the findings.
About 7 months ago, I found a palpable mass in my left breast.
- Ultrasound showed a 0.55 cm hypoechoic mass. The radiologist thought it was probably fat necrosis from a prior breast surgery but recommended biopsy because it was indeterminate.
- The biopsy removed 6 cores, after which the palpable mass became noticeably smaller and I developed a large hematoma (MRI later measured approximately 2 cm of biopsy-site change).
- Pathology showed invasive ductal carcinoma with micropapillary features, ER 100%, PR 99%, HER2 0.
About one month later I underwent my first bilateral mastectomy which showed
- Approximately 1 cm "hemorrhagic area" and no morphology description.
- 1 stain (p63) was performed. No additional stains
- It did mentioned invasive ductal carcinoma and copy-pasted the biopsy report but gave no additional description
- 2 positive margins (positive anterior-superior and medial margins)
- Negative lymph node involvement with 2 stains
I was surprised because the original lesion had only measured 0.55 cm before biopsy and a substantial portion had already been removed. How did the mass more that double in size and have such a vague "hemorrhagic area" and only 1 stain (p63) performed.
Within hours after surgery I could still feel a palpable lump in exactly the same location. I brought this up to my surgeon multiple times. Despite the positive margins, he did not recommend re-excision and instead referred me for radiation.
Because I was only 31, I sought a second opinion before going into radiation of my left chest.
At the new hospital, I loved my new surgeon who actually listened. My new surgeon repeated an ultrasound, which demonstrated a 0.4 cm hypoechoic mass and significant residual breast tissue after the mastectomy
My case was presented at the tumor board, and the recommendation was unanimous to perform a completion mastectomy/re-excision because of the amount of residual tissue and the persistent mass.
The second pathology showed:
- fat necrosis
- giant cell reaction
- inflammatory infiltrate
- granulomatous tissue
- Additional 72g of breast tissue (first surgery only removed 52% of all breast tissue)
Additional levels were cut and multiples stains were performed, and no residual cancer cells were identified.
Because of the discrepancy between the surgeries, I started reviewing my records and discovered that when my biopsy was sent for outside consultation, a completely different accession number was referenced. This prompted me to have independent DNA identity testing performed through another university hospital.
The DNA testing confirmed that the biopsy tissue does belong to me, so a complete specimen swap appears unlikely.
One thing I still don't understand is that while the biopsy slides have been reviewed by multiple institutions, the ER/PR/HER2 slides were apparently never forwarded despite multiple requests from multiple doctors.
I'm not suggesting anyone here can diagnose my case, but I'm trying to understand how this cascade of weird discrepancies fit together.
Some of the questions that keep coming up are:
- How does a 0.55 cm lesion (after six biopsy cores) become a 1 cm "hemorrhagic area" with two positive margins?
- How can a persistent palpable lesion in the same location ultimately show only fat necrosis and inflammatory change after completion surgery?
- Has anyone had an expert pathology review substantially revise the interpretation of a biopsy or mastectomy?
- Has anyone had difficulty reconciling pathology findings across multiple surgeries?
I know breast pathology can be challenging, and I'm not looking for validation that my diagnosis was wrong. I'm simply trying to understand whether anyone has experienced a similarly confusing course or had an expert second opinion provide clarity.
If anyone has any recommendation on receiving a second opinion pathology just for clarity or "peace of mind" to shed light on the cascade, I would greatly appreciate it!