Be Cautious of the Information You Get on the Internet About Breast Pathology

I wrote a blog article a couple of years ago about how there is a lot of misinformation given out by many websites where patients can write in and ask questions related to breast pathology issues.

Unfortunately, in the past few years nothing seems to have changed. There are still many sites out there where patients can post questions about their pathology diagnoses and many times the person responding to a patient’s question is not a breast pathologist or even a general pathologist, sometimes not even a physician! Thus, misinformation continues to be spread. I just performed a cursory review of some websites and here are a few examples of what I found:

1.   A patient writes that she was diagnosed with a small tubular carcinoma.  The answer was that tubular carcinoma is not a separate type of cancer, just a way the tumor looks to the pathologist. That is completely false–tubular carcinoma is considered one of the “special” types of breast cancer which has been shown to have a very favorable prognosis.

2. A patient writes that she had ALH (atypical lobular hyperplasia) on core biopsy and the answer was that it was best practice to have that surgically excised. The medical literature has conflicting data as to whether ALH on core biopsy needs to be surgically excised. So we don’t know if it’s best to excise ALH when diagnosed on core needle biopsy.

3.  A patient writes that she had a benign phyllodes tumor and on excision to get clear margins, the pathologist found incidental atypical ductal hyperplasia (ADH) which was at a surgical margin.  The answer was that ADH should be excised if found at a margin. Once again, incidental ADH found on a biopsy, even at a margin, does not need to be re-excised. That is not the standard of care.

4.  A patient writes that she was diagnosed with columnar cell change with cytologic atypia and asked what it meant.  The answer said it meant ADH (atypical ductal hyperplasia). Once again—that is wrong. Columnar cell change with atypia is flat epithelial atypia (FEA). If diagnosed on a core needle biopsy, there is controversy in the literature as to whether it needs to be excised whereas it is standard of care to excise ADH if diagnosed on a core needle biopsy. A breast pathologist would never confuse FEA with ADH.

5. A patient writes that she was diagnosed with an intraductal papilloma on core biopsy. The answer was that she needed to have it surgically excised. Again, as with ALH/LCIS and other high risk breast lesions, the medical literature has come to no consensus as to need for surgical excision vs. radiographic/clinical follow-up for intraductal papillomas.

These are just some of the errors I’ve found. Please be vigilant when looking for information and answers about your breast pathology diagnosis on the internet. Ask the credentials of the person responding to your question. It might not be a breast pathologist, or even a physician, answering your question.

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