Monday, July 8, 2013

Cha, cha, changes

I watch the ripples change their size
But never leave the stream

 At first I didn't question the pathology report. It was hard to focus on much past the places where the word "carcinoma" was written. It took a few weeks, maybe even months before I started to look for additional information in the report.

I was reading and article on the P53 gene, then one on cytokeratins, then epithelial to mesenchymal transition. I quickly began to wonder where could I learn about my IHC or if there was a mutation in my P53 gene. This search brought me back to my path report where I found some of the information I was looking for. Then I checked my genetic tests, the BRCA and BROCA tests. (I still need the BART)

When I didn't find all of the information I was looking for in the pathology report and genetic tests I started asking other MpBC women about their results. Some women had detailed path reports for certain but others had reports that only said "metaplastic carcinoma" and nothing else. No subtype, no IHC, no detail at all.

My second pathology report was from a needle biopsy. It said in part, "... consistent with metaplastic carcinoma with areas of spindle cell carcinoma and squamous cell carcinoma, acantolythic viariant."

 I was anxious to read the final path report from the subsequent MX. I wanted confirmation on the "acantolythic viariant" I was curious about that aspect of the tumor. Remarkably, the report for the mastectomy merely stated "metaplastic carcinoma" with no other detail. I was so frustrated I could have spit.

It may be different for ductal/lobular carcinoma but with metaplastic carcinoma there is more to know. Is it spindle cell, matrix producing or maybe squamous? Or is it some spindle and some matrix? Is there an element of IDC? How much? What's the percentage of IDC and does the treatment change based it?

On one hand I understand that knowing all of the details isn't really going to help any of us today. We will be offered the basic triple negative treatments because that is the standard of care. (Whether it is effective or not, they don't have another option.) But at the dawn of the era of personalized medicine the pathology of each tumor should be the foundation on which we build. The details MATTER. That information needs to be in each report.

Today, there doesn't seem to be any consistency to reporting the details of a tumors make-up in the pathology report. This has to end. Every tumor must be analyzed for it's immunoreactivity and cell type, not just it's size and shape. The answer to our questions and the solutions to our problems lie in knowing these details. Let's make it our mission to change the way things are done and create a system where this information is identified and cataloged for every tumor so our researchers can  discover the individual treatments we each require to kill the cancer we have, not the cancer that is "kind of like ours." Who is with me?

Here is a link to a recent article on the need for a new system for biobanking metastatic tumors.

 Changes- David Bowe