Stage 4 Tonsillar Cancer - new diagnosis

I am looking for support and information.

My husband of 27 years was diagnosed with left Tonsillar Pillar cancer this week.  He is 48 and the progression has been scary.  No previous health concerns prior to this, in fact, the man has never been in the hospital nor had a serious cold in the past.

He had a sore throat on Mothers Day, just sort of scratchy, no surprise there because our sons had just gotten over the flu and he thought it was his turn.  The next week the voice started changing.  He started talking like a stroke patient would, sounding like a balloon was in his throat.

Since that weekend and to now he has lost approx 35 pounds (down to a staggering 115 lbs at last weeks Dr's visit).  He was sent for a CT, PET and biopsy of the mass they could see in the back of his throat.  Diagnosis:  Stage 4 - T3, N2, M0.  The mass is "highly metabolic with a very aggressive process".  There is "involvement with adjacent cervical lymph nodes and a metastasis to other lymph nodes".  Lung, heart, liver, brain and all other organs were clear.  (Although with the way this thing is moving I am sure that may not still be true).

There is an SUV of over 16 in this area with the mass (what exactly IS this Standard Unit Value anyways?) There is also evidence that activity is on the right side and the mass (at that time) was preventing him from opening his mouth more than an 1.5 inches and cannot stick out his tongue. 

Now he can open approx 1 inch or less.  The Dr. showed me how you can see the tumor and how LARGE it is.  The mass appears near his upper back teeth and you can see it disappear back into his throat. 

We meet with the oncology team on Tuesday but I have also sent his report to the M.D. Anderson Clinic for a 2nd opinion. 

In just the past two weeks this tumor has grown double in size and has already displaced his hypopharynx. 

Enough of the medical jargon... I am looking for someone that may have experienced this type of aggressive growth.  In just the past few days (since test results) there has been more deterioration in him physically.  He is ashen grey and has lost more weight.  I will encourage the Dr. to insert a G-Tube immediately since he is already having trouble with swallowing and I do not want to wait until it is too late. His spirit is strong and confident.  He won't even take any pain meds except for Tylenol.

I am not sure what they can do for him due to the rapid growth.  I do believe in the Power of Prayer...

Just saw your message. I had a similar situation and am 19 months out.

How is he doing?

Ron

I just saw your message. My fiance was diagnosed in May with Stage 4 B tonsillar cancer, very aggressive, metastisized to the lymph node on that side of his neck (the node was the size of a baseball, maybe more). No other throat involvement, however. Organs also clear. He began an agressive regimen of chemo, radiation and surgery, and was just declared in remission two weeks ago.

The treatment was very hard and he has after-effects; he still can't eat (but has a peg tube), although he can drink and has just started being able to do juice, milk and even vanilla ice cream. He is getting his strength back daily and is joyous to be alive.

 Prayers are with you. I will check back to see how you are. Don't give up!