My husband had stage 4 squamos tongue cancer and went through chemo and radiation. They declared him cancer free in 2002. Last month they told us he now has stage 2 squamos on the side of his tongue and on the jaw. He doesn't want the surgery, but wants to pursue two new study programs one through NIH to re-radiate patients and one through Balt. Univ.; a vaccine against squamos cancer. I don't know if I should tell him what I think or even how scared to death I am. He says Jesus will heal him. I tried to tell him that Jesus will heal him after the surgery, but even though he won't admit it I think he is so scared he can't even admit it. He has been a teacher and sport coach for kids all his life, and he can't even imagin the possibility of not being able to do that. I'm his care giver,his life partner, and his love. I am lost on what roll I should play. I've always made the decisions for us in our private life, but I know this one has to be his. I just feel lost. If anyone has been here please tell me what I should do.

Hi Joyce
Don't know if my story will help or not, my husband Paul was diagnosed with a stage 2 tumour in his throat in May 2003. He had radiotherapy which originally seemed to have worked, but the tumour came back in his throat and tongue in March 2004.After a very traumatic time when he contracted legionnaires disease whilst in hospital, he had a laryngectomy and partial tongue removal in June 2004. From then on he was fed through a tube in his stomach. The surgery appeared to have worked, but in November 2004 another tumour appeared on the original site. We were told that chemo was the only option, to try to improve his quality of life ( not as a cure, we were told that this was unlikely and he had about 6 months). They said it was impossible to do radiotherapy on the same site after so short a gap. He had one chemo session which he coped with very well, but then developed complications with his feeding tube, and seemed to just give up. He died at the end of February this year.He was also a physical education teacher, and only 48 when he was diagnosed. The treatments seem to vary from person to person, as well as area to area, and it really seems to be a matter of luck if the treatment works.
I know exactly what you are going through, wish I had some answers. Paul was very positive until the last 2 weeks, but the treatment is very invasive. He did say he was grateful for the extra time the surgery had given him, we learned how to work round his limitations and he did have a reasonable quality of life, but we don't know what would have happened if he hadn't had the surgery, or if he'd had the surgery before the radiotherapy, so I can understand why your husband is reluctant to have surgery.
All I can say is I'm here if you want to talk or to ask anything, will pray for you to have the strength to cope whatever happens
Jennie

Jennifer thank you so much for your feelings. My situation is the same as yours with only a few changes. When my husband was first diagnoised he was stage 4 and they wanted to remove his tongue and vocal cords. The Dr. said that he would have no real quality of life and advised against it, as if we would anyway. When he had the chemo and radiation he had the stomach tube for 1 1/2 years. He couldn't even swallow a sip of water then, but with time and God's blessing his eating returned even if he did have dry mouth. It's been a good thing I can cook; I've even thought of somehow sharing what I have learned (recipes) about cooking for someone with dry mouth.

This time he can't be radiated again and they told us the same as you, that chemo without radiation isn't effective. We were going to do a core biopsy to see if the orginial cancer is still inside the tongue, but the Dr. said if he cuts into it and it is positive it will then grow faster because it will have a new blood supply as the tongue heals. My husband and I are not giving up, but I know whats coming. Sometimes I hurt so bad that I just want to go with him. I try to hide what I feel from him, but he has always known me too well, you know. I'm just going to try to make the most of each and every day we have. Please stay in touch, it helps! Thank you.

Dear Joyce.
I know just what you are going through. My husband had the bad news that his cancer is now terminal on Monday. We cried and cried but today he has gone into denial and has started saying he is going to get better and go back to work which would be immpossible. I haven't said anything to change his thoughts but it's so hard to see him going through this and to see the kids so upset and there is nothing that can make it better.
If you need to talk anytime I am here for you too. Please look after yourself too.
Love Michelle. x

Michelle44 I know how you feel too. I wish I could help you. In 2001 after my husband had all the nuke juice and radiation a person can have they told us the cancer was uneffected and he had 6 mos to live. At first he gave up and then he started in prayer. One year later they said the tumor was gone. I'm not spiritual like him, but I'll take the time whether it's from the treatments or Jesus. There is no doubt that his positive attitude was the reason he got better. He was as sick as any one human being can be. The first school year (he's a teacher) I took him to the school each day (stomach tube and all) and he stay in the teacher's lounge half a day and someone would take him home. Gradually he drove himself for his half a day and then all day. By the 3rd quarter he was helping the teacher they got to replace him. The next year he was back to teaching. If your husband wants to believe that he will go back to work, why not let him. That way he has something to work towards. Whether he does or not it may help him.

Michelle I can't tell you anything that makes any of this any better. Frankly it SUCKS! I just refuse to let in destroy the time that I do have, right now, today. When it comes over me I go outside or in the basement and have a good cry. I hope you have children or family. There is a limit on how much you can share with children, but it you have friends I learned that nothing in life is as heavy if I share it with people I love and they help me carry it. Are you in any support groups? There arn't any in my area, but you might check it out and see if they can help you deal with this. I'm here for you if I can help.