Tuesday, April 19, 2011
The doctor actually called Monday afternoon, earlier than his assistant had said he would. Not sure if that's a good thing or if it's an indicator of how serious things are. Not that I need a reminder of just how serious. Regardless, the news was as expected: Squamous Cell Carcinoma. He recommended that I come in to discuss it with him in person.
After some minor issues with the office and scheduling (the doc had said I could come in today to talk with him, but the office kept trying to tell me he doesn't do 'same-day' scheduling), my parents and I headed to his office at around 2pm.
Even though we didn't have a legit appt, we didn't have to wait long to see him. He explained that I had a tumor in my tonsil, which wasn't news, but that it had spread to involve the lymph node that was swollen - swollen not as an indicator of the nearby cancer, but because it was cancerous as well. He went on to talk about what are basically my 3 options: Radiation and chemo and if necessary, surgery. His opinion was that often rad and chemo don't do the job alone and I would likely have to have surgery anyway, and that going at it with only rad and chemo meant much more intense versions of that treatment, which could likely result in a lot of damage to my throat, possibly to the extent that I'd need a permanent feeding tube.
On the other hand, surgery first would reduce the need for such intense therapies and is more likely to do what's necessary without severe physical scarring. Surgery comprised the other two options. Basically the same operation, but with two differing options as to rebuilding my neck and jaw. The first surgical option involved removing tissue and muscle from my chest to replace the muscle and tissue removed during the operation, and the second option called for using tissue and muscle from my left arm. The chest option could be performed solely by Dr. Rothman, but the arm option called for a cosmetic surgeon who would repair my arm, presumably because it's more visible than my chest I guess.
He explained that the surgery would involve a 'radical dissection' of my neck, my jaw would be taken apart, basically, to get at the tumor in the tonsil area. This tumor presents as firm and 'fixed', as opposed to a looser tumor which would feel more like a ball under the skin that can be moved around. The loose version of the tumor might have been operable through my mouth using robotic tools. Mine is fixed and fibrous and can't be removed that way.
Either option means major surgery and I would likely be recovering in the hospital for 7-8 days. A milder course of radiation and chemo would follow about 5 weeks later. I could potentially have these treatments done anywhere I like, not necessarily here in Phoenix. My mom and dad would certainly prefer that I return to Florida for these for obvious reasons. I could live with them and as they are retired, they could be full-time caregivers during the treatments. I still have a lot of mixed feelings about going back to Florida, but I know that it would be easier for everyone involved, me included. I know I have a lot of friends in Florida who will be happy to know I'm coming "home".
*edit* The doctor gave me a 75% chance of being 'cured'
After leaving the Dr's office, we tried to find out if the hospital had some sort of patient advocate service to help with the financial problems that I'm sure a lot of patients experience. It was a little disheartening that the information desk people looked at us like we had sprouted horns. They made a half dozen calls before giving up. They directed us to the ACCCHS and DES offices. Access and Dept of Economic Security. I had already started the application process for these two branches and upon speaking to the woman in the office we were able to confirm that my application was in the system and I just had to finish gathering the requested information to complete it. Once done, as long as I'm not making enough money, there should be no reason why I wouldn't get Access, which is basically state-paid health insurance. She explained that I might have some co-pays, but that I wouldn't have to pay a "percentage" of any costs like in a traditional insurance scenario. I asked her if the fact that I did have some limited insurance already would influence or alter my chances of getting Access or how much I get and she said no, one would just be secondary to the other. She also explained that the application was put in on April 1st (go me!) and that I should get reimbursed for any expenses paid since then. My mom would get her $1000 back!
Obviously this was a HUGE load of my mind.
I have no major issues with having surgery, beyond being scared shitless of the surgery itself and moreso; the recovery in the hospital. The idea that radiation and chemotherapy treatments will be less intense after the surgery help relieve some of my fears, or at least the intensity of said fear. My larger concern, beyond mortality, is the possibility of a long-term or even permanent feeding tube. I don't have huge issues with disfigurement or scarring (much), I just fear losing one of my few remaining pleasures in life - food.
Oh well, baby steps. Dr. Rothman is going to consult with a cosmetic surgeon he works with and get back with me in a couple of days. Surgery is expected to be within 3 weeks.