I am a single mom with an 11 year old who needs me! And I just got news that I need to basically get my affairs in order. I had a sub-total glossectomy and neck dissection in November, 2015. Pathology came back with clear margins and no lymph nodes involved so I thought I was clear. I had gone through chemo-radiation prior to surgery (I know this isn't ideal but my surgeon tried and then cancelled a surgery before the chemo-radiation and said due to location of tumor, we needed to shrink it first).

Yesterday I had a CT and discovered that the cancer has returned in area above larynx and voice box (near carotid artery). I have both PET scan and fine needle biopsy scheduled for this coming week but surgeon said there is really no doubt that it is cancer. Surgeon seemed to think it may be inoperable due to location and of course, I've already had chemo (cisplatin), radiation and surgery so that complicates things further. I do plan to get a second opinion from Johns Hopkins (I went there for a second opinion last time and they did the last surgery). The local surgeon I spoke to ended up discussing palliative care as the path that he thought we would go down, although he was trying to make sure we knew options. He said the speed that this cancer has returned shows how aggressive it is (it is 12 weeks since surgery). I have heard about immunotherapy and clinical trials--anyone have experience with recurrence of this type?

Im very sorry to hear of your recurrence. A second opinion at a CCC like Johns Hopkins is an excellent plan. I hope that facility will be able to give you options besides palliative care.

There have been a few members who have posted about trials they have been in. Do a search using the words clinical trial in the search box to read those recent posts.

Best wishes with everything!

Cathy, I am sorry to hear your news.
Please get that 2nd opinion from a CCC. You need to be at a well renowned leading cancer centre. I am sure that there will be other options out there for you. These options may seem drastic and you may well reject some at first thought. But, do consider all options seriously.
My Husband Kris had his base of tongue cancer return after rads and chemo. He was told that his only option for survival was a total Glossectomy and a total Laryngectomy. So, entire removal of his tongue and voice box. He was horrified and said no way would he do this. But , he needed to really consider this. He was told he would be dead within 12 months if he refused this surgery. Like you, he had much to live for. So, 2 weeks later he had this surgery done. It was gruelling, but it was and is doable. This was 4 years ago next month and Kris is alive and well with No Evidence of Disease.
I am not saying that is what you need, but your options may include what sounds like brutal surgery. Just please consider them. Your life is worth it. Others here too, have undergone quite brutal life saving surgery and are living well.
Please get that 2nd opinion. Please advocate strongly for your life.
I wish you the very best. Please let us know now you get on.
Tammy

Cathy,
I'm very sorry that your cancer is back. I've had a recurrence also 4 years after I finished radiation. Hopkins is one of the best hospitals for H&N cancer in the USA so I'm glad you are there for another opinion. Over the years I consulted with doctors at multiple locations and Hopkins was by far the best. I had my last 2 surgeries there and I wish I had gone there from the beginning. Wishing you the best!