In January 2004, Lucy started having discomfort in the back of her mouth. She went to her dentist where they told her she needed a root canal which was performed the following week. The pain did not stop. Lucy returned again to the dentist for more procedures and still had pain. Finally her dentist felt a small lump in the back portion of her mouth. We went to see her doctor and he referred Lucy to a head and neck specialist. The doctor said he thought it was a calcium deposit because it felt hard. The doctor said he would perform the surgery and not to worry because ninety percent of these cysts were not cancerous. After surgery the head and neck specialist said he did not know exactly what the cyst was and had it sent to a laboratory for tests. About a week later the results came back that Lucy had Adenoid Cystic Carcinoma a rare form of cancer. Lucy’s doctor was out of town when an associate called Lucy and told her over the phone this was a bad type of cancer and to make an appointment with them. Lucy called me crying and scared. I rushed to her work and we went home both of us very scared. We called her doctor’s office and told them to have her doctor call her with an explanation about the cancer and treatment options. The doctor called back and apologized about the first call and explained that most patience with Adenoid Cystic Carcinoma lives five to twenty years and to come in and he would explain more and that the cancer was treatable. The conversation made us feel a little better because it gave us some time and hope for a cure.

A group of doctors and radiologists collaborated and decided for Lucy to have a special form of radiation that would kill any lingering cells since the margins were not cleared. We didn’t know what else to do and had faith in this group of doctors so we decided to go forward with the radiation treatments. The treatment would be five days a week for six weeks. After two weeks Lucy had a lot of pain from sores in her mouth and her tongue. Lucy could barely talk and lived on protein drinks for seven weeks. After the treatments ended Lucy was told she was cancer free and when she felt good enough she could go back to work and get on with her life again going back for x-rays in six months to make sure the cancer did not return. After time Lucy started feeling better and she did go back to work and exercising. She had a head and neck MRI and it turned out well (no return of cancer).

We were still uncomfortable with the five to twenty year survival rate and made an appointment with the MD Anderson Cancer Center to find out more from their head and neck specialists. They told us the procedure done in Phoenix was exactly the same procedures they would have done and to go home, keep an eye on it and have MRI’s every six months for five years and once a year after that.

Then in February, Lucy started having shortness of breath while exercising. We thought it was her asthma and went to see her asthma doctor where they gave Lucy a prescription for an inhaler and that should take care of her breathing problems. Well it got worse and Lucy had a MRI of the chest where it showed the Adenoid Cystic Carcinoma had spread to her lungs. We were not expecting anything like that so we made another appointment at MD Anderson where the tests confirmed the cancer had returned. They also said Lucy had fluid in her lungs which needed to be drained. MD Anderson suggested chemotherapy treatments that could be taken back home.