Here’s the note I sent to family members when we got home

Now, this gets pretty technical and you may not understand a lot of it.  But ask me about the parts you don’t understand and I will do everything I can to explain.

Yesterday, she had what they call an “operative endoscopy.”  They put her under anesthesia and put scopes in her oral cavity, down her esophagus, down her windpipe, so they could get a good look at everything.  There is some good news here.  The cancer (although it is a bit bigger than they thought it was) is still confined to where her left tonsil used to be before it was removed.

These are two different shots of the same tumor.  In this next shot, I’ve outlined them for you.

It’s about 3cm at its longest length, but the doctor said it seems to be confined to the immediate area.  It’s not in her esophagus, it’s not in her windpipe.  It’s not in the base of her tongue or the roof of her mouth.  Just there in the region right behind where your last molar is, and into what’s called the “tonsillar fossa” which is where the tonsil sat before it was removed.

That white patch…probably a leukoplakia, which hasn’t quite turned cancerous yet.

So… what’s next?

Our ENT doctor, Dr. Strome will set us up to visit with a radiation oncologist, a doctor who treats cancer with radiation.  Sometime during this upcoming week, Gail will have a PET/CT scan.  In these, they inject a person with radioactive sugar water.  Tumors and infected lymph nodes light up like Christmas trees and show up on film.  However, Dr. Strome said you get a lot of false negatives with head and neck cancers, because the lymph nodes are so small.  So you can’t “rule out” transmission in the lymph nodes with a negative PET/CT scan.

The ENT guy and the radiation oncologist will compare notes and present Gail’s case to the hospital “Tumor Board” on Friday.  Then on Monday the 27th, we’ll meet with Dr. Strome and get the final word on what’s going on and what’s going to happen.

The important thing first is to “stage” the tumor.  It’s larger than 2 cm, so that makes it a T-2.  We don’t know if it’s in any lymph nodes, or if it has spread to any other organ, like the liver or lungs.  Once we have that info, then the docs can charge full speed ahead and treat this thing.

Right now, the thing to remember is that it looks like, so far, it’s been caught early.  So, hope for the best,

Also, and this is really getting into the weeds here… her survivability will depend on a large degree on whether or not the tumor has any Human Palpilloma Virus (HPV) DNA in it.  That’s the sort of thing Gail had her cervix removed for.  But it’s not likely that a woman can give herself an HPV throat cancer from her own cervical cancer.

Once we get all the facts, the doctors will decide on one of three courses.

Remove the tumor, treat the neck with radiation therapy.
Remove the tumor, treat the neck by removing the lymph nodes.
Leave the tumor there, radiate the tumor and the neck.

At this stage, survivability doesn’t seem to show much difference between any of these three modalities.

The size of the Tumor puts her at a T-2.  The way these things are staged is by the size of the tumor, the number of lymph nodes it has affected and whether or not it has already spread to distant sites, like the lungs, liver or bone.

No nodes affected makes you N-0. One node with cancer in it on the same side of the tumor? N-1 if the node is smaller than 3 cm.  If it’s bigger than 3cm, it’s N-2

Then there’s the “M” component of staging. No spreading to distant sites M0. Spreading to any distant site? M1.

Knowing what we know now, Gail is T-2, N-?,M-?  The fact that she has a T-2 tumor automatically puts her at Stage II.  She would move up to Stage III if they find an affected lymph note.  If a single lymph node is cancerous and larger than 3cm, or if she has more than one lymph node of any size on the same side of her neck as the tumor affected by cancer, she is Stage IV a.  If any of the affected lymph nodes are larger than 6 cm, she’s Stage IV b.  If there’s any spreading to any part of her body, like the lungs or liver or bones, then the size of the tumor doesn’t matter, the number of lymph nodes doesn’t matter.  She’s Stage IV c.

Five year survival rate (and keep in mind, these are averages… some live much long, others live much less…

Stage II — 70-80% will still be alive in five years.
Stage III — 50% make it five years.
Stage IV — 30% hang out for five years.

Like I said, the size of Gail’s tumor automatically puts her in Stage II.  If they find an affected lymph node, she’ll be Stage III.  If they find more than one, that’s Stage IV.  And if they find that it’s spread to the bones, lungs, liver, etc., that’s automatically Stage IV.

But she’s home now.  Feeling pretty good.  She just had a big bowl of cocoa wheats and is feeling strong.  She knows you all love her, and that gives her strength.

Now we just need to see what the radiation guy says, what the PET scan shows, what the Tumor Board Decides and what Dr. Strome decides to do.  We’ll know the whole game plan by Feb. 27th, and I will make sure everyone knows the score.

I know this is all very technical, but I also know you all want as much information as I can give you.  If you have any questions about any of this, e-mail me and I will answer your questions.

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