Essential e-patient topic: understanding the challenges of pathology and diagnosis

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.

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Posted in: e-pts resources | pt/doc co-care | research issues | Why PM

 

 

Comments

14 Responses to “Essential e-patient topic: understanding the challenges of pathology and diagnosis”

  1. bev M.D. says:

    Hey Dave;

    Good post!

  2. New on e-patients.net "Essential e-patient topic: understanding the challenges of pathology & dx" http://bit.ly/aLjg3t

  3. @KevinMD @TrishaTorrey the new e-patients.net post is about your pathology/dx posts http://bit.ly/aLjg3t

  4. Susannah Fox says:

    Thanks, Dave! I hadn’t read those posts yet, but pathology has been on my mind recently because of this NYTimes article:

    Prone to Error: Earliest Steps to Find Cancer
    http://www.nytimes.com/2010/07/20/health/20cancer.html

    Another link in the lab tests chain came from a suggestion on my “Crowdsourcing a health survey” post to ask about going online to get info about lab results. That question is now on the survey, thanks to George Linzer of LabTestsOnline.org (and the preponderance of evidence that it’s a significant research question):

    http://e-patients.net/archives/2010/07/crowdsourcing-a-survey-health-topics-2.html/comment-page-1#comment-55385

  5. Thanks, Dave! The importance of understanding how pathology works is critically important to any patient & I’m glad to see so many useful resources gathered into one post.

    • Georjean Parrish says:

      Ditto, I’m excited too. I have a worse story. We were told I had a very advanced stage rare kidney cancer, they removed my left kidney and all associated parts and told us to refer to the path report for the dx “Non-invasive papillary transitional cell carcinoma”. They told us I was cured and all the cancer is gone, that it should never come back and I’m not a cancer survivor. But, thanks to God i did survive speptic shock, resp failure, fungal infection, total organ failure, from an inadvertant puncture of my intestines. And because I have many questions they sent me a registered letter that they refuse to treat me as of 4/30/2010. Really need a doctor, but still have $3000 left on my deductible and living on SSD, Does anyone know of a doctor that deals with a person like me. I also have 3 big abdominal hernias, constant cong and tired and back pain. Not to mention I must of had 50 plus ct scans,mri,exrays. but they tell my husband and I that shouldn’t cause me any problems. Thank you for listening and God bless.

  6. Paul Dorio says:

    Nice post and thanks for spreading the word! I particularly appreciate the comment that people “remember to approach the conversation presuming you’ll get the partnership you want.” Most doctors want to work with their patients to treat them and care for them to the best of their abilities.

  7. Nothing new in what I am going to say: when it is about cancer, the pathology report is a fundmental tool to get the appropriate diagnosis.

    Before you walk out of the doctor’s office you should first make sure that the pathologist and the pathology department of the medical institution where work was performed have a good reputation.

    That’s what I learned in June 1995, within 30 mns of joining the BREAST-CANCER listserv. It makes perfect sense: why would you trust blindly these MDs while you question the expertise of the other ones?

    We didn’t walk away from the surgeon, we walked away from a medical institution who had a sub-optimal pathology department. That fact was a great red flag about the lack of excellence in cancer treatment of the entire institution.

  8. RT @S4PM: New ep.nt post "Essential e-patient topic: understanding the challenges of pathology & dx" http://bit.ly/aLjg3t

  9. Understanding the challenges of pathology & diagnosis. http://dld.bz/qd3q)

  10. Annie Stith (@Gr8fulAnnie) says:

    Hey, Dave!

    Thanks so much for the explanation. It’s clear and concise, and understandable (I would imagine) for most patients.

    I had a surgeon completely jump the gun by telling me my swollen breast “looks like inflammatory breast cancer, THE ONE that’s most aggressive,” and told me to call the city’s breast cancer treatment center “before you leave the parking lot,” to schedule an appointment ASAP.

    He absolutely terrified me because we’d lost my mother to “THE most aggressive breast cancer” the oncologist had ever seen when she was only 51. I also have both a sister and an aunt who are breast cancer survivors, so my risk is very high.

    As it turned out, I had an MRSA staph infection in my milk ducts, which I found out a few terrifying days later when the pathology report on the discharge came back.

    I would MUCH rather have continued to have needlessly worried those few extra days rather than going through the total freak-out that I did.

    Namasté,

    Annie

  11. bev M.D. says:

    Well, I have been on the other side as a pathologist; having to inform a surgeon over the OR intercom that his frozen section biopsy was inflammatory breast cancer when he had been treating it as an abcess for several weeks….he was devastated. I would like to be charitable and say the surgeon was trying to make sure the patient did call the treatment center right away and not deny the issue as some do….but s/he certainly could have said it could be EITHER an infection or IBC, and a biopsy was needed ASAP as treatment needed to be instituted immediately in either case. It’s hard to justify how s/he said it, it’s true.

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