Thanks Anne and Christine!
Anne: I have learned from the folks on this site about PET scans and their tendency to show false positives, especially so close after radiation/surgical treatment. I think my SO prefers to order CT with contrast. With my initial DX, I was pregnant and had to have an MRI without contrast. So the only scan I've had since the initial diagnosis was that CT scan with contrast in August. Right now, I see my SO every 6 weeks.
Christine: I am only being followed by my surgical oncologist because my only treatment was surgical. I consulted with a multidisciplinary team before and after my surgery for a few things. First off was what to expect after surgery as far as diet/adequate intake, especially considering that I was pregnant. At the time, it was not known if I would be having an NG tube placed or not, but they figured I most likely would. I also consulted with my MO and RO. They explained to me that I could start chemo while pregnant, but I would have to wait until after delivery to start rads. This was all at Mass General Hospital, which is where I would have been treated for adjuvant treatment should I need it. Luckily, since my tumor was small, had clear margins, and 29 nodes were negative down to the top of level 4 with my SND, the oncology team did not recommend chemo/rads. They said I have a small chance of recurrence, but should it happen, it's treatable.
My surgical oncologist is an otolaryngologist who specializes in head and neck cancer. He is the head of the head and neck program/hyperbaric program at Mass Eye & Ear Infirmary. He teaches at Harvard and works with doctors at Dana Farber Cancer Center and Massachusetts General Hospital. I know I am in the best hands with a thorough team. In fact, my MO and RO (whom I no longer need to see) said that my SO is known for his diligent following of his patients and consults with other physicians when necessary. I am so fortunate to have him as my doctor and wouldn't want it any other way.
I have a large 5-subject notebook that I started from day 1 of my diagnosis. I keep a section for each discipline, since I had so many doctors involved in my care due to my pregnancy. I was sure to write down any question/concern and never left until each item was addressed and made notes on them. The doctors came to know my style and actually were impressed by my organization, but it was the only thing that made me feel as though I had any control over the whole situation. I have never stopped doing that and never will. In fact, at each appointment my SO examines me, we talk, and then he says "What do you have for me?". We both smile as I pull out my green notebook and he sits beside me and we read the questions together. I try to write down questions and notes between my visits as soon as I think of them so they don't fly out of my head, so I am prepared for my next visit. It just so happens that this time, I had other concerns and never thought about the scans until after my appointment. So, yes, I am writing these in my notebook to ask him next time.
As far as the node is concerned, I don't think it has changed and if I thought that was the case, I would be in there the same week. However, over the last couple of days, I have had a vague, intermittent ear ache on both sides, but I'm not sick. Then, tonight, I ate some food that was rather tough and difficult to chew and I had some jaw pain. Both symptoms are gone now. It just made me unsettled and it got me palpating around my jaw and neck. I found 3 more small nodes in addition to the one that the doctor checked out on my last visit (1/13/12). I don't know if they were there before or if they're new. I had Dan mark them with a sharpie and take pictures. I will monitor them and also email the pics to my doc. He always tell me "If you have something that you're worried about, please call me and don't drive yourself crazy.". So, I will give him a call on Monday and email him the pictures.
Ladies, thank you so much for your support and sharing your knowledge, experience, and hope!
xoxo,
Kerri
