Hi Diane

Your options are almost identical to the ones Alex faced in 2010. The Head and Neck guidelines list both treatments as options for stage 4a oropharyngeal cancer. HOWEVER the induction chemo is controversial as even the experts cannnot agree.

For us, we threw the kitchen sink at it and took the induction chemo because we wanted to minimise our chances of recurrence. Downside is more severe, lingering side effects and longer time to recover.

First round of chemo had an immediate effect for Alex and by round 2 the oncologist could not longer see or feel the tumour. This complete response may well have occurred with chemo/radiation alone, but we will never know. I DO know that on the strength of Alex's response the doctor started ordering HPV tests for his other oropharyngeal patients - believing that Alex's response had something to do with that.

Would we do it that way again? Hard to say. I think Alex might say no, and I would say yes. Alex certainly suffered from some very severe and long term effects including 12 months on a PEG, ongoing issues with thick stringy mucous and long term battles with mucositis. He struggled to eat with bloating and/or nausea affecting his ability to get all the calories he needed for about 2 years and still has is days. We just don't know if this was the effect of the chemo, the radiation or even the effect of leaving a hole created by destroying a 4 cm lump of malignant tissue that obviously did damage of its own whilst it was sitting there.

I often wonder if we went too hard but then remember that if we had gone the other way and the cancer had come back, our distress around a recurrence would have been far greater if we hadn't tried everything... Of course if we had gone the other way and the cancer hadn't come back we would have been in a better place than we are now.

I hasten to caution that Alex had a particularly rough time and others seem to recover faster than Alex has, so you should read everybody's stories to get a balance. I believe that part of the problem for Alex was that he was already underweight at diagnosis and had been procrastinating about seeing the specialist for a couple of months putting him behind the eight ball before we started. In addition, he suffered a lung collapse on day 4 of chemo which complicated his treatment and recovery time. In addition to battling the cancer and the chemo, his body was also battered by major surgery to repair his lung.

The reality is that only you, your husband and your doctors can make the choices with your husband getting the deciding vote. To that end, make sure as David says that your doctor is a good one with lots of experience with this type of cancer from a CCC.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight