Where Did My Tumor Go? Following Up on Tissue and Organ Samples

A healthcare professional disposes of medical waste.
A healthcare professional disposes of medical waste.. PhotoAlto/Laurence Mouton/Getty Images

In 2004, I found a golf-ball sized lump, a tumor just under the skin on my torso. It was removed by a surgeon who, when I asked him what he thought it was, told me he didn't know because he had never seen anything that looked like it before. The events that ensued are described in another article here at About.com: A Story of Misdiagnosis.

Once I finished reading The Immortal Life of Henrietta Lacks, I began to wonder what had become of my biopsy - that tumor that had been removed from me that spawned the misdiagnosis.

I realized those tumor cells were very strange, unrecognizable to the pathologists who studied them and diagnosed me, and perhaps of future interest.

Had the tumor been donated to someone doing research? Were medical students using it to determine the difference between my diagnosis (subcutaneous panniculitis-like T-cell lymphoma) or the eventual diagnosis (still incorrect, I believe) of panniculitis?

Or - perhaps it was part of a landfill somewhere. I had no idea!

Where Did My Tumor Go? Following the Lab Trail

I decided to get some answers. I have my medical records from my misdiagnosis odyssey, so I contacted the pathologist I had been in touch with previously at each of the three labs that had been involved in my diagnosis.

I learned that protocol dictates that the original lab be the one that determines what happens to the material after it has been collected from a patient, and after all opinions have been rendered.

I also learned that only small samples need to be kept. For example, when someone has cancerous material removed, enough of it is kept to diagnose, stage and make other determinations for that patient. The rest is disposed of as biohazardous material.

In my case, my excised tumor was the size of a golf ball and was encased in itself.

Further, according to the pathologist, it was so unusual that there could be further questions about it. So once the first review was done, the entire lump was sliced into thin enough pieces to be seen under a microscope, then preserved in small blocks of paraffin wax to keep it from degrading.

Those blocks of paraffin wax then made the rounds - to the second opinion lab, then the National Cancer Center, where it was determined it was not malignant. Then the specimen was returned to the original lab where it had been taken after the surgery. Today those blocks of paraffin, with my tumor preserved inside, are being kept in storage, not too far from where I live, for up to 20 years.

Will My Tumor Live On Like Henrietta Lacks?

So now I know. My tissue has not been used for any subsequent lessons by medical researchers, nor students, and that is the end of that.

Or not exactly. My entire career was spawned by that tumor, and that sample! And who's to say that someday my tissue sample won't be pulled from storage or sold for research or used to compare against someone else's tumor?

While doing this investigation, and awaiting replies from the three pathologists I worked with, I did some further investigation into issues like ownership, biobanks, and informed consent. You can read more about what I learned to see if your experience may have been similar, or very different.

• Learn more about what happens to organs, tissues and fluids taken from our bodies.

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