Oral Cancer-Confused Need Advice

Hi Everyone!

I am on here to find answers about my Dad's cancer he has been fighting for seven years. The doctors have been so vague during this whole process to the point we don’t really even know what type of cancer it really is. My Dad is 55 years old, a marathon runner, a successful business man and an all around down to earth guy that everybody loves. He was diagnosed in October 2004 with a little tumor in his cheek the doctors said it is Squamous Cell cancer they did surgery removed the pea size tumor and sent him on his way. No chemo, no radiation nothing said this type of cancer doesn’t return. Well three years later he felt another bump in his mouth not the same place but more on the bottom of his mouth by his jaw. Went in had it tested and of course it was cancer, they did surgery again removed the tumor and removed a lot of the area around it just in case they thought they missed something. The doctors then decided that they were going to hit that area of his face with radiation. It was intense radiation but they said if he did this there would be no way the cancer would return. A little less than a year later he was not healed from the radiation, and his jaw bone was exposed and he was having major issues with that. He stated going to the doctor in October 2010 about once a week due to the pain he was having with the jaw bone, and then he stated getting infections in his cheek. In February of 2011 his jaw bone actually broke in half it was to the point that he could not even eat he was just drinking milk shakes and smoothies. The doctors finally said well we can go in and replace the jaw bone with a bone in your leg and hope the bone takes. Then April of 2011 he went to the doctor because he felt yet another bump in his cheek they tested it and some of the skin around it. And yes again it came back positive to cancer. This time the doctors decided to perform this radical surgery where they basically took off his whole cheek took out the bone my dad went through a 15 hour surgery and they reconstructed his whole right side of his face. They took a muscle from his back and attached it to skin from his back and put it on his face. My dad is so strong and the outside of his face has been healing wonderfully but the swelling is out of control and the muscle in his face is moving and his eye is really swollen. My dad had this surgery May 10, 2011 and on June 16, 2011 my mom took him to the ER because he was so swollen, they did a CAT scan and said that he has pockets of fluid that needed to be drained so they were going to drain it. When they went in they said it didn’t look like fluid they tested it and the cancer is back. They waited all day long to get answers and talk to the doctor, he finally walks in and says “the cancer is back, it is inoperable and we are going to do chemo to give you some time.” No time line, no sorry I have been working with you for seven years we are going to do what we can, no hope in his voice, no compassion for what he is saying to us nothing. Then they sent him home said we will contact you on Monday and let you know if the insurance went through and we can go ahead with the chemo. So we are sitting here once again with no answers, no idea what to expect feeling defeated. This poor man has been through hell and back, they have done this totally radical surgery he is on a feeding tube, a trach, can’t talk, can’t eat, and is now given the news that it did nothing for him and there is nothing they can do for him sorry bye. I am just looking for some answers, support or has anyone ever heard of this before, I mean supposedly we are with the best of the best doctors but they give us no answers, and really make us feel very defeated. I am trying so hard to be hopeful but we have been let down so many times, it is heart breaking to see my dad go through all of this and to watch him suffer . I have been reading every ones posts and my heart goes out to everyone who has to go through this. I am thankful I have my mom, my sister, and my wonderful husband and my 16 month old son. It is so hard to go through this with a child, I feel so bad for him. My dad was so happy when he was born, my dad only had girls and he was so excited that he finally got his boy. He keeps saying he is so scared that my son is not going to remember him and it is just such a sad and devastating situation. I wish there was something I could to but I feel helpless. Has anyone had a similar situation to this, do you think he has been misdiagnosed, any recommendations or advice would be greatly appreciated!

Amanda