Need Some Reassurance

My husband was diagnosed a few months ago with a salivary gland cancer, however, instead of it being in the usual places it appeared in the sinus cavity. He had surgery and the tumor was removed. However 9 weeks later on our honeymoon he was having nose bleeds and difficulty breathing through his nose. Upon our return the surgery discovered the tumor came back - this time in his nose. The doctors are at a loss as they say this type of cancer is usually confined to the mouth area not the nasal area and is usually low grade and when removed does not come back quickly. However this time grew double it size in a matter of 4 days! They went in and did more surgery including removing his entire upper jaw. They are planning on starting radiation and chemo in about 2 weeks once the swelling goes down. They feel that since this acted so aggressively they need to treat aggressively and may even do double doses of chemo.

The scary part is that the doctors all indicate that there are no reported cases of this type of cancer in this area or this type of cancer acting in the manner it is.

For the most part I am handling this well - scared to death, but trying to stay positive and optomistic and have faith. But, I am finding it hard to deal with on the side that no one can give us answers and even support groups usually are for people with common cancers - I'd love to find someone who has a "rare" head or neck cancer that knows what we are going through.

Also, as a caregiver, does anyone have suggestions for me to help him.