NEWLY DIAGNOSED: Second opinions on pathology results

Hi Ross

Long time no talk lol
Thank you for the information, the pathology was the one
thing i've never thought to question, I just assumed once a pathologist rendered his finding i Assumed IT WAS CAST IN STONE. Don't know where or why i learned or thought that.
It good that you bring this up as I do not know who did
the actual pathology.
I have been having issues lately, pressure in my head like an overfilled balloon ready to pop and this afternoon my chest felt like it was on fire for about 10 minutes. The thoughts of confronting any new issues makes me shiver but at this 6 month point altho my lymphnodes are nornal sized maybe its time for me to overhaul my paperwork.
Beyond my personal woes I notice you have your own
issues as of late, I pray life becomes easier for yourself and your wife.
You are so very much needed and appreiated here and I do not think we say it nearly enough.

THANK YOU ROSS FOR ALL YOU DO FOR US!!

Linda

Thank you for this posting. When my sister kept bugging me for a second opinion, I thought she was crazy and in denial. But I did what she said and the second opinion confirmed the first.

I am eating my words now and glad we did it. Thanks for your good advice. Keep them coming.

To drive the point home, I just read about a friend's spouse whose DLBCL diagnosis was as stage IV when in reality they learned later that it was stage II. By later I mean AFTER treatment. While there's not a huge difference in standard treatment guidelines between II and IV, it likely amounted to at least a couple unnecessary chemo cycles. Aside from the enormous burden of, say, 2 chemo cycles that could have been avoided, there's also the issue of secondary cancers-- will those unnecessary cycles be responsible for a leukemia diagnosis in 10-20 years?

Between Hodgkin's and non-Hodgkin's, there are maybe five dozen subtypes of lymphoma. This means that under a microscope, cancerous lymphocytes take on sixty or so different shapes and behaviors that, on the surface, barely look that different from one another. Yes, more goes into a diagnosis than just a look through a microscope, but differentiating between subtypes is very hard, pathologists get it wrong way too often.

The best approach is to assume that the pathologist reviewing your biopsy is the first one who will do so, the first of 2 or 3, and not the first and last. There's just too much at stake to hope that one person who you probably never talked to, who may have been tired from a long night, or who may have a stack of slides to review along with yours, or who might be having a really bad day, can make the right call.

A broader perspective of this topic can be found in an article at Curetoday.com entitled Mistaken Identity. The article quotes James Armitage, MD, a professor of internal medicine at the University of Nebraska Medical Center (italics are mine):

“I think [blood cancer] diagnoses are likely to be complicated for a long time. And probably general pathologists aren’t going to do that extra [testing] very often. That’s the reason I won’t treat a patient for a lymphoma unless an expert hematopathologist here [at the hospital] has reviewed the slides. I don’t know what percentage, but the number of [hematologic cancer] patients who have their diagnosis changed is substantial.”

How difficult is it for pathologists to correctly diagnose T-cell lymphomas? According to a 1998 study [1], when pathologists had to rely on morphology alone (meaning the shape of the cancer cell), their rate of agreement?

34 %.

When they could include phenotyping, their rate of agreement:

74%.

Good, but not great. Make sure more than one expert has reviewed your results!!

[1] Management of rare forms of lymphoma

This should always be bumped up for newbies to read!