My sister had oral surgery, removing approx 1/3 of her tongue 10+ years ago. She now has been diagnosed with stage 4 squamous cell carcinoma and the ct scan indicates that the part of the jaw bone is definitely effected/destroyed per the doctor. She isn't certain that she is willing to go through the proposed surgery or chemo regimen, believing that they may put her through a terrible ordeal and not result in improving her quality of life. But she is being effected by the cancer...getting thinner though nothing else so far....and knows it will only get worse. She is out of work, uninsured, and is looking at being homeless. Who can help?

Welcome to OCF. Im so sorry to read about your sister. She certainly has the whole world on her shoulders.

Your sister has some very big decisions to make. Im sure she is feeling overwhelmed about her situation. If she decides to ignore her cancer and not treat it, then she will eventually pass away. It could be a long, drawn out and painful death. There are many stage IV survivors who live happy, healthy lives. Im one of them! My third round of OC, I was Stage IV and was contemplating giving up. The members of this forum helped me to understand that I couldnt just give up until I put forth an effort to beat it. Luckily I took their advice and Im still here, helping other OC patients and caregivers. There are many survivors alive and well who have been thru multiple rounds of SCC. Please help your sister by passing all this along to her.

Welcome!
I'm sorry to hear about your sister's desperate situation. Ultimately, it is her decision to make whether to seek treatment or not. What does the current doctor(s) recommend? If you can, convince her to get a second opinion about treatment options.

Good luck
Don

Thank you so much for your response, Christine. I will certainly pass along your message to my sister. She hasn't made up her mind yet, and is still focusing on finding better medical help. The doctors she has spoken to so far were very dismissive when speaking to my sister, not answering her questions fully and in some cases saying, "that doesn't matter." That is appalling to me! She believes their attitude may stem from the fact that she is a charity case. Is this common? I don't have insurance either but for the moment don't have any medical issues. I will qualify for medicare in a couple of years, but my sister is 7 years away from it. What kind of help is out there for people in her position? When she had her first surgery, she was fully insured through her employer at the time and was blessed to have a top notch surgeon and medical team take care of her. In comparison, the team she just consulted with were awful! It took 2 weeks for her to have a meeting with them to discuss the results of the ct scan. Isn't that a long wait when it comes to something as deadly as cancer? During that waiting period she was able to get a copy/disk of the results and after simply emailing and asking if he was willing, sent that to the original surgeon who reviewed it for her. He said that the tumor was difficult to see but he was able to see the area of the jaw bone where it was destroyed and assumed it was from the cancer. He also explained how he would handle it (a different process than the one suggested by her current doctors) and stressed that it should be taken care of as soon as possible. Her current doctors are giving her two weeks to make up her mind and then said the surgery would take place two weeks after that. Isn't a month a long time to wait? I would like her to take the plunge and ask her original doctor if he would take her on. But he is 1000 miles away. In addition, she is trying to get another job. And has had favorable responses to that. But she is tired, likely from the cancer. I apologize for skipping all over the place in this response. As you well know, this is a very difficult frightening time.

Hello Don. The current doctors explained that they will operate on her tongue, removing about 1/2 of one side, take out the destroyed jaw bone area, and then use bone and tissue etc from her right wrist (they said they wouldn't use her left one) for repair. They also mentioned that they won't know the extent of the damage until they actually operate. She did contact her first surgeon and he looked at a disk of the ct. He said his approach would be to use bone and muscle from her leg along with possible skin grafts. This appealed to my sister more because she felt she would still be able to communicate once the procedure was complete. Whereas if she agrees to the surgical plan the current doctors have suggested she might not even being able to use her right hand for written responses post surgery making her feel like she will be totally helpless. Getting a second opinion is difficult because she has no insurance and so is considered a charity case, so she told me. Is it possible? Thank you so much for your response, Don.

Since you mentioned medicare, I'll assume you are both in the USA. As you know there is the Affordable Care Act (Obamacare). Call your state group to get info on that coverage. The rates vary according to income and with such major procedures you face now, no matter what the premium is, you must try to get insured that way. That said, I have no idea if providers limit the number of patients they accept with these policies.

Call your county health department. Depending on where you live, there are varying kinds of safety net health programs. You may qualify and get basic service (cancer treatment would be covered) locally. You are getting much choice but you do get care.

A few weeks waiting while getting doctors and boards to review your case is not unusual. A month is pretty normal from time of initial diagnosis until a treatment plan is defined and started.

There may be some assistance places that could help your sister in the following link. Don gave some good options. There are even places to stay and airlines to help if your sister needs to travel for treatment.

Best wishes!

OCF's Financial Info Page (from main OCF pages)

Thank so much for responding, Don. I am going to talk to my sister tomorrow and will go over your response with her. I really appreciate it.

Thanks so much for your response also, Christine. I am going to talk to my sister tomorrow but before then I'll check the link you provided and look into the other kinds of assistance you mentioned. I really appreciate it.