Dear Mark and Brian,

Thank you for your warm welcome and for both of your messages. In reference to Mark's message, I have consulted with a radiation oncologist. Because their assessment of my disease staging is T2N0M0 at this point, their recommendation is a single treatment modality. Since there are considerable difficulties with radiation when bone is involved (osteonecrosis, osteomyelitis, etc.), surgery was recommended. Radiation (IMRT) would be added only if they were unable to obtain clear/wide margins or if there is any evidence of lymph node involvement. Radiation will cause additional problems with the prosthesis, so I really hope that I will not require it. As far as the surgery is concerned, they are not recommending a selective neck dissection to rule out micromets at this point. (Of course they will be monitoring me VERY closely every three months).

I also wanted to thank Brian for his words of encouragement. I feel very fortunate that the success rates for what I have been diagnosed with are high. My maxillofacial prosthodontist has also informed me that people don't seem to have too much difficulty adapting to the obturator. However, I am concerned because I have never worn dentures or even braces before. I have only had one (bad) experience with a denture in my mouth. After the excisional biopsy from which I was diagnosed, I was fitted with a surgical splint and had to go to the ER the next day to have it removed because I felt like I was choking! It was awful. I know I will HAVE to get used to this obturator because I will not be able to live without it, and people do what they HAVE to do to live. But, I still am very concerned about what to expect.

There are many resources for people diagnosed with common cancers such as breast cancer, and MANY survivors you can talk to who can tell you what it is like to live with a post-mastectomy prosthesis. However, when you have a less common cancer such as this, it becomes much more difficult to connect with someone who has shared a similar experience. Also, HIPA (privacy) laws, while not without their benefit, do prevent my prosthodontist from being able to facilitate a meeting between me and another patient. It would be SO valuable for me to be able to connect with someone who uses an obturator to fill a maxillary defect, so I can have an idea of what day to day life is like with this device. If anyone has any suggestions on how I could do this, I would really appreciate your suggestions.

Thank you for your help and support,