Hello, I can very much relate to what is going on with your BIL but we are a little further ahead of the game than you are. My sister was dx in Sept. She also has no insurance, was stage 3 oral SCC. Her primary tumor started under her tongue and grew rapidly when the oral surgeon ripped it out of her mouth instead of cutting it. In order to get her seen quickly we were told we should go to the ER, which we did. We spent 10 hours in there before she was admitted. The main complaint going into the ER was pain. She was still able to eat by mouth. She spent 10 days in the hospital basically having very little done, it was a hurry up and wait situation. I am an RN so I spent most of the time there with her. I live 2 hours away and had to go home once during that 10 days. I am very mouthy and questioned everything they were doing. For example, we knew she was going to need a feeding tube but they took her to surgery to put it in while she was inpatient. They said they couldn't get the tube down her throat so they decided the tumor had closed her throat. I threw a fit because the major complaint she had was a very painful sore throat. If she was able to drink it would soothe her throat. So they sent speech therapy in to evaluate her and they decided she was able to swallow so they let her start sips. The next morning they checked her again and decided to let her have full liquids.
Let me say here a lot more happened in between, this eval was done the morning they decided to let her go home. She also had the feeding tube in place by now and they wanted us to use it. I wanted her to eat by mouth as long as she could. We also do not use the commercial feeding, we make it ourselves and it has been a work in progress.
She is at this point through her chemo and radiation. She is very tiny, was only 89 lbs when this started. After the 2nd chemo, only 3 were scheduled along with daily radiation, she became so violently ill that the family decided she would not be able to handle the 3rd chemo. She had gone down to about 80 lbs and is still trying to increase her wt. (She is up to 88 lbs)
I do want to tell you we are not seeing any lack of care regarding treatment or surgery because of her being on MA, however, she is also receiving Charity Care from the hospital so that may be the difference. We are now in the process of talking to the surgeons about reconstruction but have not had the final scan to see how much tumor is left.
Have to get off right now but would be happy to discuss more later.
I think it is very important that someone be with the family when they see the Drs because I think they are to emotional to understand what they are being told.
One more thing, we have gotten very little emotional support except for the absolutely fantastic radiation dept. Someone in the hospital should study this dept. The drs, nurses, radiation techs and office staff go above and beyond with encouragement and support and if it hadn't been for them I'm sure my sister's depression would have been much worse.