Hi
My husband is an oral cancer survivor with a recent recurrence. His original cancer in 2006 was on the right side of the tongue and had metastasized to his neck by the time he was diagnosed. He had an excellent surgeon and care team in Baltimore : had a hemiglossectomy and modified radical neck dissection followed by 32X IMRT. He was very lucky: the team declared him cured in 2010; we relocated to Virginia later that year.

Fast forward to early 2016. His dental hygienist saw a spot on the left side of his tongue. He consulted an oral surgeon and they decided not to do a biopsy. After several consultations, they finally do a biopsy in June. It's positive, and the tumor shows signs of perineurial invasion. The follow up is terrible (missed phone calls; staff on vacation) and when he finally connects with the surgeon in July she tells him the tumor board recommends a total glossectomy. He insists on second opinions and meetings with an oncologist and radiologist. He is adamant that he will not have a total glossectomy.

I finally persuaded him in July to consult with MD Anderson in Houston, and he had his consultation appointments in August. The good news was that the tumor was still small and had not yet metastasized to a detectable level on any of the scans (PET, CAT, and MRI). He had chemotherapy in August and September and returned this week for follow up.

The bad news: the chemo was only partially effective. The tumor did shrink from 16 millimeters to 9 mm, but it is still diffuse. The radiologist seems adamant that more radiation is just not possible: it is too dangerous. So, we are waiting for the final consultation later this week with the options and next steps.

I'm frustrated and angry that it took so long to get him diagnosed and into treatment this year. Nothing I can do about that now. I'm scared about what is going to come. I don't think he is going to survive this recurrence.

He's in the best possible hands at MD Anderson and they said in August that he is a long way from clinical trials and experimental therapy. That may not be the case now, after the chemo. We'll hear their options and advice shortly, but I'm interested in what people on this board have experienced and what they know. I'm hoping for a treatment course that can give him a few more years with good quality of life but I'm no longer very optimistic about it.

What have all of you on this board seen with treating recurrences and the treatment effectiveness?
Thanks for listening