Welcome to OCF! Im so sorry to read about what you are currently going thru. Your choices are not something anyone would want to make.
Just remember the doctors work for you! You should be comfortable with your doctor to have conversations and ask questions when you dont understand something. Not all doctors have the best bedside manner which makes it hard to have open, truthful conversations. I once went to a doctor who was the top doc within 100 miles of my location in the Northeast US. At my appointment he came in like a big shot with his interns following behind him as he explained everything in medical terms never speaking to me directly, instead he instructed his students to ask me all the questions they wanted and to get the necessary info they needed from me. I found the entire thing upsetting like I was on an assembly line being worked on and that was only for a second opinion. Moral to my story is sometimes the most brilliant doctors have a terrible bedside manner and arent able to effectively communicate with patients.
I suggest going for another opinion ASAP! Seek out one or two (or more) of the US's top comprehensive cancer centers (CCCs). The top CCCs attract the best and brightest specialists who all work together to build a treatment plan. At their meeting (called a tumor board meeting) all the docs work together so they're all on the same page. This makes a big difference by avoiding any lack of communication between doctors at different facilities. The patient and caregiver are allowed to attend the tumor board meeting too. If at all possible try your best to attend!!! You are part of the tumor board meeting too. You can even talk to the doctors and ask questions. CCCs are the best places to treat complex cases and recurrences. The doctors at CCCs work with OC patients every day, not a couple times a year found at smaller local hospitals. Please do not let location seal your fate. There are several places that help cancer patients with housing, flights, other transportation either free or very low cost. Over the years, people have told me patients and their caregiver stay for free, $5 or $7 a night at special medical housing units close to all the top CCCs. These housing facilities give free transportation to and from the treatment center. The medical housing sometimes even provides food for patients and their caregivers. Help is out there, sometimes it takes some digging but its worth the effort to overcome this horrible disease. At least it was worth it for me.
Your post brought back some memories of very difficult times I went thru in 2009. Some of my hardest days were when I was diagnosed with oral cancer (OC) for the third time in 3 years, but this time it was Stage IV. My chances of beating the OC in 2009 were very slim. So slim that my ENT sat down with me and began a very serious talk by telling me to get my affairs in order as soon as possible. I remember one thing I asked... "what about the first 2 times Ive had OC? They certainly werent easy at all and this time its even worse?" My doc replied those first 2 times of having OC were just a warm up of more serious ones to come and this is it. After much consideration I decided not to get treated. I was feeling the best I had in many years, when that diagnosis came in I thought it had to be wrong... I felt strong and healthy. While I felt great my plan was I would live my life out with my teenagers by preparing them to have a life without me. I reasoned it would be easier on my children if I could be with them to get them ready for their only parent to die. That was one of the hardest decisions I ever had to make. The wonderful, caring people of OCF would not accept my decision. I eventually called Brian (OCFs founder) asking if he ever met anyone who went thru OC 3 times and survived, which he said he knew of some 3 timers. The numerous OCF friends from all over the world hounded me and drilled it into my head if I dont try then Im giving up. They said I cant quit until I put some effort into fighting. Well I am 10 years later, which tells you I finally listened and went thru with the major surgery that removed half of my lower jaw. Somehow, against all odds and major complications after surgery, and I was going into this with a much weakened body from already going thru OC twice before. If I had it to do over again I still would go thru with the surgery even though I had a heck of a recovery after my 2 month hospital stay and Im now disfigured from complications. Im telling you this to let you know recurrences as you already know are NOT easy to handle. Those hard decisions must be made, the sooner the better for seeking further treatment. My advice is to try getting into a CCC where a team of top specialists will create a treatment plan that hopefully will work. It certainly cant hurt to keep going and look for a cure against all odds. I hope one day you will have a success story like mine. I have links for CCCs and the best hospitals in the US.
Best wishes with everything!!! I hope you will continue to post and let us know your progress.
NCI list of CCCsUS News Best Hospitals ListMain OCF Site, Financial help for OC patients including flights, lodging, etc
