Diagnosis: I first saw the doctor in Jun 2001, who kept telling me I had sinus problems. After 4 months of continuous trips to the doctor with a muffled ear and dizziness I was told I had a distorted eardrum. I saw a specialist in Dec 2001 who gave me steroids. In April 2002 I had a CT scan and was diagnosed with a Glomus Jugulare Tumour. I was sent to Liverpool for a operation to find out it was a Chordoma Tumour of the Temporal Bone (prognosis of 5 years maximum). I was 31 at the time. I had Stereotactic radiotherapy for 7.5 weeks and was told by my oncologist that he thought they had misdiagnosed me. In November 2004 I finally was told that I have Chondrosarcoma of the Temporal Bone.

Treatment: I waited from April 2002 until August 2002 for surgery but it took over a year to be diagnosed and for a doctor to believe me. I had a radical mastoidectomy to remove the tumour which was on the temporal bone. When I went into hospital I had no idea it was cancer as they misdiagnosed me. After surgery the doctors kept talking about follow up treatment…thats when I realised it was serious. My 7.5 weeks treatment with sterotactic conventional radiotheraphy were probably the best time I’ve ever spent in hospital. The treatment was awful but the support and friends I made in the hospital more than made up for anything I was going through.

Recovery: After my radiotherapy I was off work for 2 months to recover. Sickness and tiredness were the worst factors. I have permanent loss of hair but was very lucky as I can hide the loss. To date I have had no recurrence. I have yearly scans and 6 monthly check ups by my surgeon but have still not talked to anyone since I got a letter with my new diagnosis of chondrosarcoma, so have no idea what my prognosis is part from it is better than Chordoma. I have constant noise in my ear now but I have been so lucky as I was told I would lose facial nerves and all my hearing in my right ear. None of this has happened so I am one of the lucky ones.

Life Now: I am back to work full time and have taken up running to raise money for cancer patients. I sadly lost my Dad to Stomach cancer whilst I was going through my radiotherapy so cancer is very close to me. I wouldn’t change a thing of what I have been through as it has changed my life for the best. The friends I have made has been unbelievable but also the sadness of hearing they have passed away is the worst.

Thoughts and Hints for New Patients: Try and be positive. Without being positive I think you just give up and admit defeat. There is a life after cancer, yes every twinge etc I think for a split second…is it back? But you can get through it. I found it harder to cope with my dear Dad suffering than going through it myself…that was a lesson learnt by me, it can be hard for those round about you.

Diagnosis: I experienced double vision and lack of balance, left arm weakness, memory loss and confusion. If I look back over a period of years I can see problems like a constant noise in the ear (a low pitched noise) and left eye vision problems, but they all seemed to be there. I thought I had a mini-stroke, I was so confused and unable to make decisions.

I waited three days before finally attending the GP, who informed me that I had a middle ear infection and a painless migraine, two days later I returned and was told, it would clear, three days later I re-contacted the GP and was impatiently told ok, CT Scan and Blood work, I received the CT Scan was called to the GP Office that afternoon and involved I had a tumour in my skull base, I would need to see a neurosurgeon and I would have an operation to remove it.

One week later I saw the neurosurgeon, two weeks later I had an MRI and saw the neurosurgeon again, who informed me that he believed I had a Chordoma (a benign tumor) and he was to be away for several weeks. I spent 6 weeks waiting for surgery.

Treatment: I had a craniotomy with left side entry. The tumour was in the left cavernous sinus, and causing marked displacement of the carotid artery, wrapped around the left carotid artery. The operation report says there were large areas of calcified tumour that could not be removed, inoperable skull base chordoma.

The Surgeon and the Staff were absolutely wonderful. Follow up after 8 weeks with neurosurgeon Histology Report explained that this was not Chordoma but Chondrosarcoma some grade 1 , some grade 2. My follow-up MR after three months was clear. I am having vision problem, an urgent MRI is scheduled for 15th August, 2005. I received no Radiation and no chemo. Australia does not have Proton Beam therapy at this time in 2005.

Recovery: Tiredness is the only issue I have had, until vision problem lately. I found that with medication I was not allowed to drive a vehicle and found small things like phoning the local bus company, they then made astop outside my house.

Life Now: I made a full recovery, was back to full time work after one month after surgery, and was playing field hockey after two months.

Thoughts and Hints for New Patients: Hold on, Hang in there, I do believe its harder for the caregivers than us, we have to go through with the treatments etc, waiting is the hard thing, but we will fight and we will get through it.

Fibrosarcoma at the Nose
Age at Diagnosis: 20

At 20 years old, life was smooth sailing. I was a junior at the University of California at Berkeley, a confident, athletic, successful student. Some even considered me handsome. I was living life on “easy street.”

But that year, several people began to ask if something was wrong with my nose. My right nostril appeared to be flared out. I eventually took notice of a bump pushing against my right nostril, and when it didn’t go away, I made an appointment with a doctor. After telling me it was probably a pimple, when it didn’t disappear three weeks later, he finally suggested a biopsy.

It turned out that I had a tumor, a rare fibrosarcoma. I would later discover how lucky I was that I got the right diagnosis, given how few of these tumors pathologists see. The bulk of the tumor was removed during the biopsy, but I underwent surgery to excise any remaining tumor cells. Fortunately the procedure was minor, and with only a few sutures, I returned to classes looking like I had been in a fight with someone, not something.

But six months later, I discovered a new lump in the same nostril. Then my cheek began tingling. Numerous specialists confirmed that my previous, supposedly unthreatening tumor had procreated a horrific, life-threatening malignancy. Prescribing more surgery, my doctor warned that I might lose part of my nose, but his main concern was saving my life. I suppose I was too young to contemplate dying, but the notion of disfigurement was devastating.

I awoke from surgery to find that half of my nose had indeed been removed, along with half of my upper lip, muscle and bone from my right cheek, the shelf of my eye, six teeth and part of my hard palate. My doctor promised to make me “streetable” before I left the hospital. What I didn’t realize then was that this was his way of preparing me for a life of disfigurement.

As I re-entered the real world, I noticed adults staring and children pointing—and sometimes laughing—at me. My hospital room had protected me; outside of it, I was vulnerable and exposed. Of course I cared what other people thought of me; I relished the admiring looks the old Terry had received. Now I was petrified of potential reactions to the new Terry.

During the following months, I encountered many friends whose occasional and inadvertently negative reactions left an indelible mark on me. Even worse, radiation treatments were shrinking my facial tissue, magnifying my deformity. My self-esteem sank increasingly lower, and I constantly sought reassurance from others: “Do my looks bother you?” “How could you like me?”

Five years and 20 reconstructive surgeries later, I was still plagued with insecurity. During my last procedure, I met a woman receiving treatment at my hospital. We began dating, but after hearing me ask—for the umpteenth time—how she felt about my looks, she ripped into me. The bulk of my problem, she informed me, was not my physical appearance, but my emotional insecurity. Her honesty helped me realize that my mental and emotional scars were far more disfiguring than my physical ones. Once I got over the devastation that she was no longer interested in me, I began to realize how lucky I was that she had highlighted my greatest weakness. With a fresh perspective, I realized that surgery wasn’t something I could control. What I could control was focusing on rebuilding what was inside.

I began examining myself from the inside out and used prayer and support from loved ones to boost my spirit and self-esteem. I volunteered at The Wellness Community, a cancer support organization, and discovered that helping others is great therapy: I felt progressively better as I offered inspiration and hope to those coping with cancer. With time, my emotional pain subsided.

Altruism seemed to be the greatest form of therapy. I began to feel better about myself as I realized that I could bring tremendous inspiration and hope to those coping with cancer. Over time, the pain I felt from being an outcast subsided.

We all wrestle with insecurity. For me, it took something devastating to recognize that battle scars make people interesting and wise; trauma helps us appreciate life and prepares us for its inevitable adversities. Today I am thankful for who I am—a much stronger and wiser person than the old Terry. I am grateful for my experience because I appreciate every day of my life, and I am more forgiving and tolerant than ever before. What I learned I hope to teach others.

• Each of us has the ability to take control of our lives. We have to learn to focus on what we can control, and stop worrying about what we cannot control.
• We owe it to ourselves to surround ourselves with people we trust. Without trusting my family, friends, and medical team, I wouldn’t have had the positive attitude necessary to carry on.
• We can all face our challenges, but we need to focus on the most pressing issues so we don’t get overwhelmed with all that we want to improve about ourselves.
• And finally, we need to be aware, alert, attentive and more accepting of one another, because we never know in life who or what will impact our lives and inspire us to achieve things we never thought possible.

I remain cancer-free 20 years after treatment. I published a book about my triumph in February 2006, called At Face Value: My Triumph Over A Disfiguring Cancer. I am also a motivational speaker, and though my primary business is consulting, speaking has proven to be the most therapeutic part of my recovery. I learned a lot at a very young age and am grateful for those gifts and lessons that I hope I can communicate to people faced with challenges and adversity in their own lives.

Editor’s note: Terry Healey is a technology marketing strategy consultant. He is also an author and a motivational speaker. For more information about his speaking and his recently released book, please visit his website.

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.

Diagnosis: I had dental work in late December 2004. Swelling and aggravation occurred back by my right molars. I went back to school in Orlando, but the swelling got worse. I saw a dentist in Orlando, he put me on antibiotics for a while then sent me to an oral surgeon for a biopsy. I was diagnosed 3 days later (Feb 22, 2005) with an aggressive, life-threatening form of cancer. Osteogenic sarcoma of the jaw.

Treatment: My family and I chose Fox Chase Cancer Center in Philadelphia. I went through 6 cycles of chemo (methotrexate, adriamyicin, cycplatnum) starting in early March. After that a major surgery occurred May 26, 2005. Performed by Dr. Ridge and Dr. Topham. The right half of my jaw was removed and replaced with the tibia from my left leg. I had feeding tubes, tracheotomy, etc. I recovered and went home a few weeks later.

Recovery: I worked extremely hard to rehab my leg and jaw movements. With the removal of the bottom right side of my teeth, chewing is now more of a process but I am dealing with it well. Some pain occurs in my leg and jaw but nothing overwhelming. I put on 30 lbs in about 4 weeks to better prepare for my last 6 cycles of chemo. I am now finishing up my last 4 cycles here at Fox Chase. I am expected to be done and cured by mid September of 2005. I am thrilled with my results, considering what they could have been.

Life Now: As anyone with this disease knows, we are in another family ow too. I have been overwhelmed with supportive emails, letters, etc. from others with cancer. It has proved so valuble for my fight. And my family itself has been so supportive in every single aspect of my fight. My girlfriend Natalie has also been by my side throughout this fight. Also, my general attitude on life is very different (for the better). Once I am totally done with treatment, I plan on helping in support groups or however I can.

Thoughts and Hints for New Patients: Use a day or two to be upset about it. Get it out. Then its time to FIGHT. You can beat this disease!