In May,, my dear friend Paul had surgery to remove 2/3 of his tongue due to squamous cell carsinoma. After that, they did 31 radiation treatments with effects that were worse than the surgery. He's lost a lot of weight and was doing fairly good in spite of his difficulties eating. A few weeks ago he began to see a lump on his neck where the drainage tube was from his neck dissection. It looked like an infection. They looked at it and gave him anit-biotics. Nothing happened. They did a biopsy and another CT scan. On Frida we saw the doctor again for the results. He began by saying, This is NOT GOOD Paul. There is a tumor in your neck and "I don't know why this happened". Paul asked if it was terminal and he said he didn't know. On MOnday, we see the plastic surgeon, for what reason, we are not sure. On Tuesday, we see the Oncologist who we had never seen before. Wednesday we find out if this is terminal. Paul is taking this much better than I am. He's holding out hope but I am completely shattered. I can't stop crying and I try not to do that in front of him. He just keeps telling me that when he dies I should take care of his dog. I'm just crushed and don't know what to do. I did make some calls to the Cancer Clinic of America. They don't do much in head and neck. They suggested the UW Madison Hospital and Clinic. I'm in the process of getting a refferral. Dr. Gupta did not sound at all hopeful and just kept telling Paul and me that this is not good. This is not good. I am at a loss of what to do. Paul's family is completely dysfunctional and came to see him once after his original surgery. I've done all the rest which is fine. I lost my other dear friend to brain cancer three years ago and it seems like a replay of that. I just can't stop crying and feel totally helpless. Has anyone had a recurrance of this. What did they do. I read that chemotherapy is of minimal effectivness. Are there other treatments. What do I do for him. What do I do for me. How can I help him when I can't stop crying. Please help us. Brian [email protected] and [email protected]

Brian,

I want to say that although I haven't been through a recurrence with my friend I understand being a caregiver to a friend. I have done the same thing for my best friend who also had squamous cell carcinoma (I HATE those words), and just finished eight weeks of radiation. I am so sorry for the pain and emotional trauma you and he are experiencing. I am certain that some others with more experience will give you sound medical advice and sound suggestions pertinent to your situation.

I guess I wanted to reply because the pain you are in leaped off the page and I want to share that I have found great comfort from many caring members of this forum and I know if you keep posting you will to.

As to what you can go do, please get the best medical advice you can. If you guys have the resources go to the best facility you can. Eric (my friend) and I drove over 200 miles roundtrip for every doctors appointment and radiation appointment. I don't regreat that a bit, although he wasn't always cheery in the car. I believe it is important to do everything you can to beat this, and there isn't a cancer out there that someone hasn't beat. This means that despite how grim it looks, you can have hope. I know what it is like to have tears and feel hopeless, but the feeling will pass and your friend will need you to be the support you have been througout his difficult journey.

I am sure you will find some answers and comfort here and I hope you feel better soon.

Jack Hovenier

Hi Brian,
Recurrance is never a good thing. We all fear recurrence. I would recommend the closest comprehensive cancer center from this list at http://www.nccn.org/
You are correct that chemotherapy hasn't been found to be really effective in treating head & neck cancers - it is typically used as as adjunct to the radiation. I would suspect they would be looking at some form of "salvage surgery". If he had IMRT they may be able to give additional radiation. There are people on the site who have had a recurrence, been treated and are doing fine. Don't give up hope.

Hi, Brian, first off get yourself to a major cancer center. If travel is a problem check out www.aircareall.org....they fly people for free is they can`t afford it.....secondly, we had a reoccurance of tumor next to the carotid artery, which was removed successfully. As a caregiver, myself, I understand your pain....been there, done that, still doing that........Many prayers your way..........Dee

Brian - first of all I want to tell you how amazing you are. Your loyalty and friendship to your friend Paul is inspirational. It's easy to say "hang in there" but I know it's hard to be on the outside...such a helpless feeling. I think it's good that you are reaching out for advice. It's sometimes the only thing we can do when we really don't have any control over a situation. There is lots of great advice and resources on this site and the people are amazingly supportive. Try to stay positive. Live each day as the gift it is. My prayers are with you and Paul for a positive outcome.

Brian, I know from experience being told of a recurrance is devastating, I've been through the surgery and radiation twice. But, just because there was a recurrance does not mean that it is terminal.

The main thing is, as others have said, to try and get yourself to a good cancer center. The statement that now, after surgery and radiation Paul is just now seeing an oncologist tells me that maybe the doc's you are dealing with aren't all that up on head and neck cancer.

Don't jump to the conclusion of "terminal" just yet. Let some docs who are experienced in head and neck take a look. Sounds like there may still be some options open.

Bob