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Two posts have brought into wrenching relief one of the more difficult topics I’ve encountered in healthcare: the challenge of understanding diagnosis, especially when difficult pathology is involved.

It started with When a biopsy cannot completely rule out cancer, a post by pathologist Jeffrey Sparks on the KevinMD blog. Separately, Every Patient’s Advocate Trisha Torrey wrote on her personal blog about the visceral reaction she had when Regina Holliday’s paintings reminded her of her own horrifying misdiagnosis. And she joined in the comments at Kevin’s.

First, some definitions, for people who are new to this:

  • Pathology is the study and diagnosis of disease. (Wikipedia)
  • A pathologist examines samples (cells, fluids, or even whole bodies in an autopsy) and declares what seems to be wrong with them.
  • A biopsy is the removal of tissue sample; the word also applies to the sample itself. (Wikipedia) Biopsies can be done in various ways.
  • Diagnosis in any field is identifying the nature of something (Wikipedia lists four types in medicine).

In my case, my kidney cancer was formally diagnosed when a fine needle aspiration removed a bit of tumor from my left lung in January 21. A fine needle (duh) was poked into my lung, carefully guided by a CT scan to make sure it was going into exactly the right place, so it hit the tumor. They sucked out (aspirated) some cells. I then sat downstairs while a pathologist examined the cells and said “Yup, he’s got kidney cancer in his lung.”

Until that moment, everyone with half a brain knew it was likely that I had kidney cancer, based on earlier scans. But until the pathologist actually looked at cells, they weren’t certain – so they might have prescribed the wrong treatment.

And that’s why this is important.

  • Sometimes it’s not that clear under the microscope what’s wrong with the cells. See examples in the comments on the KevinMD post.
    • Ironically, the earlier they catch a disease, the less chance the cells will obviously be sick.
    • Also ironically, the effort to be “minimally invasive” (cut out less of  you) means smaller biopsies, so the pathologist has fewer cells to examine.
  • Sometimes the tissue sample gets damaged (smooshed!) when it’s cut out of you. For instance, the needle they poked into me probably squished some cells.
    • Again ironically, the tinier the sample they cut out of you, the more cells may get smooshed.
    • In my case, very late stage cancer, I imagine it didn’t matter much. But pathologists on the post are saying it can matter.
  • Sometimes one doctor misinterprets (or overinterprets) what the pathologist said. In Trisha’s case, two pathologists said the sample was “most suspicious for” and “most consistent with” a rare and lethal cancer. Neither said definite, but her own physician said “You have a very rare cancer.”

I am no expert in this area – Trisha has built a Diagnosis 101 site with a slew of resources. My point here is simply that it’s valid to ask to know more about your diagnosis.

Or your parent’s. Or your child’s.

If your physician objects to your questions, that’s not empowering, and you might want to vote with your feet. But remember to approach the conversation presuming you’ll get the partnership you want.

In any case, for starters, please go learn what the doctors are up against: read that post and its comments.