Riley - my husband had unknown primary as well. Very scary, however, we hope that his radiation treatments and concurrent chemo, with follow-up radical neck dissection, got it, wherever it was hiding. As far as chemotherapy to help prevent recurrence, this was advised by my husband's oncologist locally, but we went to Johns Hopkins for a second opinion. The doctor there (head and neck cancer specialist) advised that studies have shown that additional chemotherapy as a follow up did not prove to be of any value in preventing a recurrence. She (the doctor) did say that if he did have a recurrence, then chemotherapy would be warranted, although if the recurrence was sooner (within 18 months) rather than later, the chemo would not be as effective in treating the recurrence. Just thought I would pass along what we found out. Consequently, my husband elected not to have additional chemo at this time, even though his odds of recurrence are very high, since he had an unknown primary, and following radiation and chemo, he still had viable cancer cells which were noted in the pathology report to be "nearly completely necrotic" (whatever that means) when he had a radical neck dissection after the RT and chemo.

By the way, my husband finished radiation/chemo on April 4, had surgery on April 13, and about 3 weeks ago, he finally started eating, just little amounts at first, but hasn't used his feeding tube since. His taste buds are back for the most part, except for certain things.

I hope you get good advice to determine what is best for your current situation. Best wishes to you during your recovery.

Michele
(P.S. - I will not be on the forum for a couple days because I have to disconnect my computer due to some work being done at my house, just in case you have any follow up questions. Should be hooked back up Saturday or Sunday.)


Michele, caregiver to husband, Jesse, SCC diagnosed 1/5/06 unknown primary, lf neck mass >6 cm. Chemo (Cisplatin 2x; Carboplatin & Taxol 2x) & XRT radiation 39X ending 4/4/06. Rad neck dissection 8.5 hrs 4/13/06. 30 HBO treatments Fall 2006.