Tammy’s Story

Chondroblastic Osteosarcoma at the Maxilla
Age at Diagnosis: 36
Year of Diagnosis: 1998
Location: Manitoba, Canada

Diagnosis: I had been hit in the face with a baseball and paid a visit to my dentist due to a loose tooth. He told me to keep an eye on it and if it got any looser then I should come back. He thought that I might have to have a root canal if need be. I returned to the dentist in a month as a lump has now erupted on the gum above the tooth. He sent me to a specialist who then took a biopsy. Two days later I was called to come into the office immediately as the results were back. I left work for the appointment and when I arrived I was ushered into the office. The doctor came in and sat beside me…looked at me and said: “This is not good. Did you know you have cancer?” Gee obviously not. He diagnosed me with chondrosarcoma.

I was sent 2 days later to the cancer care centre in Winnipeg to see the head and neck specialist. I had a sarcoma located to the right of my sinus cavity and they would have to remove 4 teeth…my gums…part of the roof of my mouth and the bone above and part of my sinus cavity. I was sent for a CT scan, chest x-ray and a bone scan. This was November 12th. I was scheduled to have surgery on December 4th. I was sent up to see the prosthodontist so that a prosthesis could be made to be inserted after surgery. These few weeks were pretty hectic. After I left the dentists office I was a mess. I asked my husband to call my parents and let them know as I was not able to tell them myself. That evening I also asked my husband for a divorce.

Treatment: I had surgery done on Dec 4th. The doctor removed the affected bone, cartilage and whatever else he needed too and the prosthesis was fitted into place and screwed into my head. I awoke in my room and immediately touched my face to see if he had cut through it as he didn’t know before surgery what was needed to be done to remove the tumor. Thankfully he did it all through the roof of my mouth. I was sent home from the hospital in 2 days…i had no stitches or tubes and everything was just removed and there was no incision. I had to return to the hospital in 2 weeks to get the packing changed but when the doctor tried to remove it…the procedure was 2 painful to continue so he booked me into the OR for 2 consecutive Fridays so that i could be anesthetised for this. After this ordeal i spent more time at the dentist getting the prosthesis adjusted to fit into my mouth so that there would be no food escaping either into my nose or through the teeth.

I had 7 1/2 weeks of high dose radiation…so I had a mask made to hold me to the table…the radiation created a whole bunch more issues as it burnt my mouth completely inside and i was unable to eat….the mask was altered and a piece was made to hold the tongue down during the treatments…this took me 2 weeks to recover then i finished the radiation out. I had to wait another month for my mouth to completely heal and then i would start chemo. I could not get a bed in the hospital for treatments so the wait was longer. I was admitted for the insertion of a port-a-cath and when i was in for the surgery the doctor managed to secure me a bed and chemo was started. It was terrible. I spent a week in the hospital having treatments around the clock and was sicker than a dog. I was sent home on Friday and Sunday morning i couldn’t get off the couch. Back into the hospital to the emergency and into an isolation room…i started menstrual bleeding at this time and my hair all fell out within 2 days…i was unable to eat and spent 14 days in isolation going home only after i promised i would eat and my mother would take care of me. I stopped my period for a year and though i was hitting menopause heavy. Night sweats and temper outbursts…but alas…everything returned to aormal within 6 months of my cessation of treatments. Two months later I began treatments on an out-patient basis, 5 days a week once a month for 12 months. My regime included the following drugs: Cisplatin, Cyclophosphamide, Etoposide, Methotrexate, and Adriamycin. I returned to the hospital every months for a year after so that i could have my port flushed out, chest x-rays and blood tests taken I had my port removed 2 years later. At my 5 year check up my doctor gave me a dozen roses and a gift certificate to my favourite restaurant and told me that i was an inspiration to them all. I felt so proud that day.

Recovery: My recovery seemed to be a forever process but when i look back I think I did very well. My doctors were always amazed at how well i looked….even bald and skinny. I went from 159 to 125 and looked like a skeleton. I gained back the weight and got nice curly hair although it was brown and came in grey. I didn’t have to undergo any physical therapy or speech therapy. Other than the slight changes in the appearance of my face there were no other signs. I have had more mental issues than physical due to the fact that 2 weeks after my last treatment i moved myself and three kids into our own house. I could not move any sooner due to my health. I had to live for a year and a half in a house with a man i was divorcing…was not an easy thing to do. I had to live through emotional abuse and mental challenges almost every day. Even on treatment days i would have to come home and clean the house and make sure that he had dinner on the table when he was home for work as this was my rent!!!. I was on disability and had to pay for all the groceries…he made the list and would check to make sure i got everything he wanted. Other than the prosthesis doesn’t fit right all the time due to the shrinkage in the tissue it is ok…i am seeing a plastic surgeon and have to decide whether i want him to make a flat over the roof of my mouth or not.

Life Now: I have a great life now!!!!!!! I got remarried last July to my high school sweetheart…i went back to school after i moved out and became a health care aide. I am now working as an individual support worker full time with an adult with autism. I love my job. My kids are doing great and they are very proud of their mother and tell me I am their hero. I live on a cattle farm…have a big garden that i find very therapeutic. My eldest is going to graduate from high school in a month and I am so proud of him and happy that i can be around to see him.

Thoughts and Hints for New Patients: Always have a positive outlook. Live life to the fullest and have no regrets. I took this time to reflect on my life and what i would have done different…then if i could change it…i did. Take care of yourself during your treatments…let others help you when they ask. I made the mistake of trying to turn everyone else away and be this strong person….this is the time when it is the best to have someone to lean on. If you need to talk to someone do it….don’t hold in anything that is bothering you….if anyone has the right to vent it is someone who is facing one of the biggest challenges that they will ever face in their lifetime.