A Day Full Of Consultations / March 15, 2017

March 15^th and we have a day full of consultations with our entire medical team.  That sounds impressive doesn’t it, Medical Team.  Once you understand how this works, it really is.  At least we were impressed!

The first visit was with our Oncology surgeon.  This was to get the results of out PET Scan and find out where this tumor is growing so we can attack it.  I have done enough research on Google to know that it will suck no matter where it is. 

The doctor comes in and says, “You have cancer in two of your lymph nodes. The one we originally biopsied, and the one above it.  This is normal and helps confirm that these are from drainage from the mouth and throat area.  The bad news is that we did not get any up take or activity from anywhere else.  This means we do not know where the original tumor is.

When I asked how this could be, he explained.  The PET Scan is very accurate on a tumor that is over 1 centimeter in size.  If it is less than 1 centimeter it is not big enough to show up because it cannot eat enough sugar to glow.  So much for that whole, “It picks up every single cell” theory. He suggested the tumor is probably not thriving very well, but once the cells drained into the lymph node it had a better environment to grow.  This sounds good right, Wrong! Here is more of that education stuff.

The next step is to biopsy my entire mouth, nose and throat.  If they are able to capture some of the cancer cells during the biopsy they can identify where it is and then use radiation to kill the cancer with concentrated beams.  If they do these biopsies and cannot find the cancer cells, then we are dealing with what is known as an “UNKNOWN PRIMARY”.  An unknown primary means they have to radiate the entire head and neck to treat anywhere the cancer could be growing. The consolation prize is that the cure rate is better with an unknown primary because when they are done, there are no small cells left behind to grow later.

As I finished my appointment with my surgeon he let me know I will be doing seven weeks of radiation, Monday through Friday for a total of 35 treatments.  I will be doing seven chemotherapy treatments, one day a week, during these same seven weeks.  He said they will bring me to the brink of death but will bring me back before it is over.  Okay, not a great topic to end our meeting on.

 When we left the surgeon we went to the Cancer Dentist.  She came in and did a complete exam of my mouth as well as taking x-rays.  She then gave me more unsettling news. Since I am dealing with an unknown primary right now, she will have to remove the back eight teeth. The back two upper and lower teeth on each side.  She also said that she will be removing the tori bones inside of my mouth below my tongue.  She warned me this will be painful, but is necessary to avoid complications with the radiation.

The next stop was the chemotherapy doctor.  This doctor told me I would be treated with Cisplatin chemotherapy.  The side effects of this chemo drug are hearing loss and kidney failure.  I explained I have chronic kidney stones and tinnitus from my days in the Air Force.  Well, now we are going to be monitoring for the hearing loss and using a lighter dose of chemotherapy, and hopefully I will be able to tolerate it.  The good news, I won’t lose my hair.  The bad news, I will be nauseous the whole time.

The last appointment of the day was with my radiation doctor.  This doctor prefaced his consultation by saying radiation is the only treatment that has zero chance of being fatal.  He said surgery can have side effects from the anesthesia, and chemotherapy can cause a fatal allergic reaction. His treatment only maims and disfigures you, but is not fatal.  He then went on to explain how the radiation will work. 

I will be fitted with a mask.  They will then secure me to a table using the mask so I can’t move.  Once secured, he will direct the radiation beams across my head and neck.  This should kill any potential cancer cells.  Once the treatment starts my saliva glands will die.  The radiation will also kill my taste buds, cause intense burning of my mouth and throat making eating nearly impossible and eventually cause rigor of the muscles of the jaw.  Just remember, I won’t die!

By the time I was finished with these appointments I was actually kind of psyched.  As miserable as all of these sounded, the optimism and raw honesty of these doctors gave me complete faith in them.  I left these appointments with some understanding of what I was facing. I did not feel fear, I felt confident.