Revelation

OK, so the three-day weekend was over and we were expecting a call today with the pathology report from the biopsies.

The day passed with no call. I was definitely planning to call Doctor B's office on the next day and start becoming a pest. The wait was becoming excruciating.

Then, at 8:45 PM, in the middle of putting Progeny the Younger to bed, Doctor B called.

He started by telling me he was pleased with the report and that it was better then he expected. I grabbed a notepad and wrote down what he dictated from the report verbatim:

Tongue biopsy: "Squamous papilloma with severe dysplasia and small focus of superficially invasive squamous cell carcinoma."

Lymph node biopsy: "Cellular degeneration with necrosis and presence of atypical squamous cells."

Sounds good to me, too. Of course, my mind grabs onto the most positive aspects:

1. "squamous papilloma" means most of the growth is a wart, not yet cancer
2. "small focus" means the cancerous portion is small
3. "minimally invasive" means the cancer hasn't invaded the nearby tissue much

The "severe dysplasia" portion is not concerning. That means the cells are abnormal but are not (yet) cancerous. Dysplasia is completely expected in this case.

Remember, those are my own interpretations.

I apparently didn't take good notes on the meaning of the Lumpy the Lymph Node's biopsy. I don't know the implications of "cellular degeneration" or "atypical squamous cells" in that context of a lymph node and Google hasn't been much help. Can't be good whatever it is.

For most patients that phone conversation might be the only time the patient hears the pathology. The doctor speaks a bunch of jargon into your ear and you worry only about what to do about it. But me? I like details and I want to read it for myself.

One is always free to request the written records from one's doctors. I did so. Doctor B's staff was kind enough to make copies for me and I swung by Doctor B's office to pick them up. Here is the complete pathology report, with surrounding patient identification information removed:

FINAL DIAGNOSIS

A) "BASE OF TONGUE MASS":

• SQUAMOUS PAPILLOMA WITH SEVERE DYSPLASIA AND SMALL FOCUS SUSPICIOUS FOR SUPERFICIALLY INVASIVE SQUAMOUS CELL CARCINOMA.
• ADDITIONAL LEVELS AND IMMUNOSTAIN FOR PANCYTOKERATIN ARE EVALUATED.
• FROZEN SECTION REVIEWED AND DIAGNOSIS CONFIRMED.

B) "BASE OF TONGUE MASS":

• SMALL FOCUS OF SUPERFICIALLY INVASIVE SQUAMOUS CELL CARCINOMA ARISING IN A SQUAMOUS PAPILLOMA WITH SEVERE CYTOLOGIC DYSPLASIA.
• IMMUNOSTAIN FOR PI6 SHOWS DIFFUSE/STRONG POSITIVITY.

NOTE: IN-SITU HYBRIDIZATION STUDIES FOR LOW AND HIGH RISK HPV ARE NEGATIVE. IMMUNOSTAINS FOR PANCYTOKERATIN AND PI6 HIGHLIGHT IRREGULAR NESTS OF SUPERFICIALLY INVASIVE SQUAMOUS CELL CARCINOMA.

C) "BASE OF TONGUE MASS":

• FRAGMENTS OF SQUAMOUS PAPILLOMA WITH SEVERE DYSPLASIA.
• ADDITIONAL LEVELS AND IMMUNOSTAIN FOR PANCYTOKERATIN ARE EVALUATED.

OPERATING ROOM CONSULT:
FSA BASE OF TONGUE MASS: SQUAMOPROLIFERATIVE LESION. (MT)

CLINICAL HISTORY: TONGUE NEOPLASM, NECK MASS TISSUE OR ORGAN SUBMITTED:
A. BASE OF TONGUE MASS (FSA)
B. BASE OF TONGUE MASS (BLOCK BEING SENT TO FOUNDATION ONE LABS PER [DOCTOR B])
C. BASE OF TONGUE MASS

GROSS DESCRIPTION:
Received in three parts
A. Received fresh labeled [name] and "base of tongue mass", is a 1.0 x 0.5 x 0.1 cm aggregate of soft pink/tan tissue frozen and submitted as FSA1.
B. Received in formalin labeled [name] and "base of tongue mass foundation", is a 2.5 x 1.5 x 0.3 cm aggregate of rubbery glistening blood tan/pink tissue and blood clot entirely submitted in B1-B4.
C. Received in formalin labeled [name] and "base of tongue mass", is a 2.0 x 1.5 x 0.2 cm aggregate of rubbery glistening tan/pink tissue and blood clot submitted intact in CI and C2.

The report is structured a little strangely but it's simpler if you start at the bottom in "GROSS DESCRIPTION": that section describes the physical characteristics of three separate samples that were taken from the base of my tongue during the biopsy. Those three samples are named A, B and C. A is small and B and C are pretty large (roughly one inch long and 3/4 inch wide). "Fresh" means just that - the sample was delivered to the lab like fresh meat. "In formalin" means that the samples were "fixed" with formalin as a way of preserving the tissue. Formalin is a form of formaldehyde. It causes chemical changes in the cells that prevent them from decomposing so they retain the structural characteristics they had when the cells were living.

Then you can go back to the top of the report and read the "FINAL DIAGNOSIS" section, which includes results for each of samples A, B and C. There's an additional piece of good news there: Sample B results include "IMMUNOSTAIN FOR PI6 SHOWS DIFFUSE/STRONG POSITIVITY." If you remember from this post, HPV strain P16 is one of the bad strains that cause cervical and oral cancers. But P16 is also what hopefully puts me in the 80% cure rate category that we're pulling for.

I didn't realize until a week later when writing this post that I didn't receive the pathology report for Lumpy the Lymph Node. What I have is a copy of the summary that Doctor B reported in writing to Doctor W (my primary care physician). That's exactly the same as above:

Lymph node biopsy: "Cellular degeneration with necrosis and presence of atypical squamous cells."

That's a little concerning, but not too much. I'll explain specifically why in another post very soon, but the same previous post also mentions that the 80% cure rate stands even though these cancers are typically discovered after they have spread.

We'll see.

In our phone conversation, Doctor B told me that he see three possible paths forward:

1. He can perform surgery and take out Lumpy the Lymph Node and possibly the tongue growth (which, by the way, we can now christen with a name: "Pappy Papilloma". Welcome to our story, Pappy!). I didn't note what the follow-up would be after surgery in this plan.
2. Seek the opinion of an oncologist of my choice. Specifically explore whether there is a no surgery option and also whether there are targeted therapies for my cancer. I'll explain what a targeted therapy is in a future post on cancer genetics.
3. Even though Doctor B thinks robotic surgery is often oversold, in my case given the location he thinks it might be an option. He will refer me to a doctor at the Massachusetts Eye and Ear Infirmary (a research hospital in Boston) who both specializes in papillomas and related cancers and is trained in robotic surgery using the most popular surgery robot, Da Vinci.

I'll pursue options 2 and 3 immediately.