My parent decided that I would take an ambulance ride because I was in agony. That was cool because the paramedic was giving me a laughing gas to help to ease the pain. Upon my arrival in the Emergency department at Middlemore hospital, a Bone Specialist check me and ran a blood test.  He look at the x-ray and both were negative, so he said he would refer me to Dr. French and Dr. Flint, Bone Tumor specialists.  I could see my mother’s face turn to sadness and worry. I am the only child and I know I am her world. Even while I was in agony I give her assurance that I was fine and it was nothing serious.

I was admitted to the Middlemore Hospital to have more tests (MRI,  CT Scan), but there was no sign of cancer growing. My doctor order a bone scan and the bone scan come back negative. Lucky I have a very stubborn doctor. He performed an operation on my broken arm and got a little piece of my bone and send it to the lab for a biopsy. On October 9 2008, a phone call from Dr. Flint confirmed the result that it was high grade osteosarcoma. My first thought that was for my parents, especially my mother, because I knew my mom would not handle it well. Lucky in our country we have a lot of support, but still my mother was not handling it very well. She cried 2 days continuously until I told her “even if she flooded the whole country by her tears it doesn’t change the result: I have cancer.” I gave her an ultimatum: either to walk with me or kill herself. I told her the match is not over yet, yes I lost the first set, but I will fight to win.

Doctor French referred me to the Auckland Hospital Oncology Department. I meet Dr. Porter, an oncology consultant. He told me the plan; he said that I would have 4 cycles of chemo first in order to save my arm.  November 1, 2008, was my first cycle of chemo treatment, Cysplatin and Doxorubycin. I remember I was teasing the nurse who treated me when he give me the steroid drug that if I was playing a tennis match and  I will be banned for a year for taking the substance. She laughed at me. It was boring for the whole day because all I could do was lay in the bed and go in the toilet. I was watching the clock ticking and couldn’t wait until 5pm because I was allowed to go home. I went home and was happy that I did not feel sick, but 9pm struck and I was sick as a dog. My mother rang the 24 hours hospital help seeking for assistance. The nurse told her to take me back to the hospital.

I lost 14 kilos in one week. I was joking with my oncology registrar, Karen, that chemo is a very good diet. She laughed at me. I am very lucky because all my doctors and nurses are wonderful. I remember during my 2nd cycle of chemo that I give Karen a fright. Because I was very sick in my first cycle of chemo, Dr Porter change the anti-nausea treatment he order to give me a 24 hours automatic nausea release treatment. When Karen came to visit me the next day at 8am I was still asleep. So she left me alone and told my mother she would be back at 11 to talk to me, but when she came back I was still sleeping. She woke me up but I could not manage to stay awake for long. She jumped very quickly and ordered the nurse to remove the automatic release nausea treatment. Karen knew that was not the Bryall that she knows, because at that time she was the one who was doing all the talking. Mostly when they come to my room I am always making jokes to them. I worried her so much that she visited me 3 times on that day. My nurses came and checked me every hour. I was very lucky to have a wonderful team that looked after me. After 4 cyles of chemo, I  finished the CT scan and MRI showed that the cancer did not shrink. The good news was I responded to the treatment well because the broken bone was healing,  but it was not enough to save my arm. My Doctor give me 2 options: (1) keep my arm but 50% chances the cancer will come back. (2) Amputate my arm and 95% chance the cancer is cured. To me I only have one option, I wanted to live longer. So on February 4, 2009, Dr. Flint amputated my arm. Six weeks later I had another 3 cycle of chemo. Being an athlete for my whole life helped me to recovered quickly.

Next year I will be going back to University which I did last year before Cancer. I will continue to study Psychology to become a counselor. I want to help both cancer patient and survivors. My life now is wonderful, I open another door which is close before, I become a face of our Daffodil Day appeal to raise money for the Cancer Society. I also do  inspirational speaking for the Canteen (Cancer for Teenagers) to raise money. I refuse to dwell on what might have been and instead have focused on what I have to do to adapt to life as an amputee and cancer survivor.

Since the operation, I have been learning to write with my left hand, and working hard at mastering the everyday tasks that are second nature for those with two hands. It has been tough. For three months, I’ve been practicing my writing every day. The fact I don’t have my right arm to keep a grip on the paper makes it especially difficult, getting dressed is a lot harder than it used to be. Before I go out I have to have my clothes prepared. It takes ages to open a drawer because we normally need two arms to do that. I’m adapting though, and I’m doing totally fine.

I consider myself lucky that I broke my bone because if I hadn’t found out then, the cancer would have spread to my internal organs. Now on my way to recovery, I have rekindled my passion for competitive sport. As a child I use to swim.. Now I been selected as an xcellerate swimmer paralympian athlete in New Zealand. I swim one and a half hour 7 times a week. I started competing last November, and my aim is to compete in Paralympic 2012. My ordeal has taught me to value every day. “I believe you should live your life to the fullest – you never know what is around the corner.”

Bryall’s Story
Osteosarcom at the Proximal Humerus
Date of Diagnosis: October 9, 2009
Age at Diagnosis: 19
Location: Auckland, New Zealand
Surgeon: Dr. Flint and Dr. Gary French
Oncologist: Dr. David Porter / Dr. Karen Amies

I was very active, running agility in classes and herding sheep in class and trial competion with my dogs. I loved to be outside in the garden and doing team activities with my dogs.

August 21 while rising from a sitting position I felt a pop in my hip. Combined with the ever increasing pain, foggy thinking and fatigue, I was frightened. We hurried to the ER. The triage nurse said my blood pressure was off the chart (sign of pain) and hurried me to the front of the line. The ER doctor ordered a CT scan. He explained he could see fractures more easily than in the set of x-rays I brought with me.

What he saw was a fracture through abnormal material near the ball of my femur…and the lump I had recently found in my right breast.

The next morning I was in surgery. They removed as much of the tumor as possible and installed a metal brace along my femur to preserve my ability to walk. The surgeon told me I would have to find an orthopedic oncologist in Houston or Dallas who could replace my femur. Later that day an oncologist visited. She was sure that the cancers were related, that perhaps breast cancer had metastasized to the bone. I was on high doses of morphine and kind of loopy, but somethings I was told did sink in and stay with me. While we awaited the results of the two cancer biopsies, I was convinced that the cancers were not related. The hospital’s biopsy showed a high value osteosarcoma in the femur and carcinoma in the breast. This was confirmed by a second opinion from the Mayo clinic and later MD Anderson Cancer Center.

After tests, my right breast and a couple of lymph nodes were removed, and a portacath installed in my chest for future chemotherapy. I was in hospital recovering and getting occupational/physical therapy for 3 weeks. I was pretty sick, fatigued, throwing up and in pain. I had rarely had a sick day in my life before this experience.

Sarcoma is very rare and extremely rare in older women or men. In 1938 my maternal grandfather died of sarcoma when he was 62 years old. This family connection is my only known risk factor for sarcoma.

My oncologist said she was going to hit me hard with chemo. She did. Chemo was a combination of drugs given 4 days (24 hr) in hospital. My hair fell out. My nails turned dark. I had trouble with vision and reading. My white cells crashed. My platelets and red cells were low. I vomited and became very weak. Sometimes my bone marrow did not bounce back and I ran a high fever which sent me back to the ER and isolation in hospital until I could fight infection.

After four chemo treatments I went to MD Anderson Cancer Center for evaluation. CT scans and x-rays showed that the chemo had reduced and confined my bone cancer. It was also clear that my femur was coming apart. The surgery team agreed to replace my femur with a metal “bone.” During the 10-hr surgery they replaced the femur, my aging knee and made my hip socket metal friendly.

I was in hospital for 4 weeks. I had to learn to walk, dress and bath again. Fortunately using a walker after the first surgery made my upper body and arms strong, although I was lacking stamina. My husband stayed with me at the hospital almost the whole time. I soon restarted chemotherapy and will be continuing for another 6 months.

I wish I had not tried to self treat my pain and had a CT scan or MRI much earlier. My friends and family, especially my husband, have been great support. The ones who have had cancer or serious illness understand.

I don’t do any of the things I used to do but I still hope to return to a version of an active life. Although everything has changed, I am often happy. I focus more on maximizing the good times when I am well.

Peggy’s Story
Osteosarcoma at the proximal femur
Date of Diagnosis: August 21, 2008
Age at diagnosis: 61
Location: Texas
Surgeons: J. Laverty; P. Linn
Oncologist: S. Santhanam; R.Benjamin

I never had any pain or discomfort. One morning as I was taking a shower I felt a knot on my back.  I immediately called my family doctor and he suggested I have a CAT scan. That afternoon, I was told that there was a tumor on my 9th rib. At first the doctors here thought it was benign after needle biopsies. Then, during an aborted surgery, the surgeon knew it was something much different, took a larger biopsy, sent it to Mayo, and closed me back up.

Mayo returned the verdict, osteosarcoma, and within two weeks I was on my way to M. D. Anderson Cancer Center in Houston, Texas, where Dr. Wayne L. Hofstetter, a wonderful thoracic surgeon, removed the tumor and two ribs (8th and 9th) on the left side of my body. Dr. Raymond, a pathologist at M. D. Anderson upon receiving Mayo’s diagnosis, questioned if the tumor might not be a periosteal osteosarcoma as a result of the grade. He was correct. Once removed it was determined that it was periosteal osteosarcoma and it had invaded the bone marrow for 7mm.

As a result of the bone marrow invasion I took a tough regiment of chemo at M. D. Anderson Cancer Center during 2005. While Houston did not have any bad weather from Hurrican Katrina, I was evacuated during Hurrican Rita.

Since my diagnosis, the osteosarcoma has returned twice, once as a lesion on the back of scalp (removed in April of 2006) and once in the middle lobe of my right lung (removed in May of 2008). I have returned to M. D. Anderson every three months since 2005. My sarcoma doctor is Dr. Shreyaskumar Patel. In February of 2009, he agreed to allow my local oncologist, Dr. Christopher Croot, to order scans here in Mississippi every other three months. This saves me both time and money as I will only be going to Houston every six months. I have been blessed, as my scans since May of 2008 have been clear.

Up until all of this has happened to me, I had never had any type of major surgery. I have been blessed with rather speedy recoveries from my surgeries. I have never had any major pain but I don’t think that I was mentally or physically prepared for the chemo regiment that I had in 2005…no pain but tired and sick at my stomach all the time.

Through all of this, my Christian faith and the support and care of family and friends have carried me thus far in my struggle with periosteal osteosarcoma.

Periosteal Osteosarcoma at the Rib
Date of Diagnosis: April 2005
Age at diagnosis: 47
Location: Mississippi, United States
Hospital: M. D. Anderson Cancer Center, Houston, Texas

That summer I went to sleep over camp. I feel and hit my knee on a rock- no big deal until I got a bump that wouldn’t go away. I had my physical the week after I got home so I mentioned it to our NEW pediatrician. She felt it and kept her hand on it while talking to us. She sent me for an X-ray that day (a Wed), and that night I went to my friends summer home. The doctor called my mom the next day and said I needed an MRI and it needed to be done Friday. I had it done and we received a phone call around 7pm that night saying there was something on the MRI and whatever it was needed to be checked.

An appointment was made for me at Mass General on Monday morning. We went to the appointment- outside the office was a sign that said “orthopedic oncology.” At 13 I had no clue what that meant, but my parents knew. The same day I had a biopsy done and within an hour we had the results that it was osteosarcoma. I went home that night crying, afraid I was going to die. Wednesday I was back at the hospital to get my central line put it and to start chemo.

Treatment: I had 10 weeks of chemo and then an allograft done, then had another 7 months of chemo. What a way to start off my freshman year of high school! Before I started chemo my mom asked about freezing eggs because she knew it could affect fertility, but they told her we needed to think in the now not the future.

Life After Treatment: During a routine CT scan to follow up after chemo they found a cyst on my ovaries-totally unrelated to the cancer. They needed to remove it, and in doing so ended up taking the ovary also. I was told then I would probably never have children. I was devastated. Two years later I found out I was pregnant! I was a miracle and a dream come true. I now have 2 beautiful children 6 and 4. It is hard some days when my knee is bothering me and I can’t get around easily and I can’t really run. It is a constant reminder of what I went through.

Thoughts and Hints for New patients: People tell me all the time they couldn’t do it. You might think that but when you are faced with this you don’t give yourself an option. My biggest thing that helped me was I never let myself get down. I always stayed positive. You have to stay positive and know you are going to get through this!

Osteosarcoma at the distal femur
Date of Diagnosis: July 1996
Age at diagnosis:13
Location:Massachusetts
Surgeon (optional): Dr. Hornicek
Oncologist (optional):Dr. Ebb

Diagnosis: I first saw my family physician in August feeling soreness around my right knee. He determined I had most likely torn a muscle running and said to take some Advil for a couple of weeks. I was never in a lot of pain, but my knee began to swell and I thought I had better take it seriously. I asked my Dr. to send me off for an MRI. Within a few days I was told they believed I had low grade osteosarcoma. I had never heard of bone cancer before. I have been extremely active and fit my whole life and could not believe it was possible for this to be happening to me. I had to put on a brave face and prepare for what was ahead: many tests. I was off to meet an orthopedic oncologist and had blood work done, x-rays, a chest scan, and a bone scan of my whole body. I was told we would need to proceed with a biopsy in about a week, then plan the surgery from there. No chemo was planned, we caught it early enough. It was a difficult and confusing time. Hard to find answers to all the questions I had running through my head.

Treatment: The biopsy came back as expected- with the tumor being malignant. My surgery was discussed in detail and scheduled for October. I was in surgery for 10 hours, the tumor had wrapped itself around my knee and my femoral vein, and my surgeon spent hours trying to save the vein, but had to eventually “clip it”. I had 8 inches of my femur removed and a full knee replacement. My surgeon used a 3 piece metal prosthetic with a hinged knee. It runs from my upper thigh to my mid calf. Waking up after surgery was horrible. The reality of it all was overwhelming. I was in the hospital for 5 days. I had a family member in my room at all times. The nurses were not attentive and not very sympathetic to the miserable state that I was in. The pain was awful, and I rarely slept. I believe the Dr’s made an effort to try to keep me comfortable.

Recovery: Once I got home things just got worse. I was told I would be on crutches for 3 months, but I was only able to use a walker. My leg felt like it was not part of my body. If I got up to stand, it would “pop” over to one side. If I was lying down it would “jump” up from the couch or bed. My foot was always numb and felt like an ice block. Depression set in as the holidays came around and I was barely able to move about my own home. I was constantly calling my surgeon or being taking to the hospital. There were days at a time when I could not even get out of bed because I had excruciating stabbing pain in my upper thigh (unexplainable really). Sometimes it would take a dozen attempts at sitting until the pain let up enough that I could sit. If I didn’t, I just had to stand up with my walker. Once down, I stayed that way for days until it let up. No one could tell me what was happening. Finally at the 9 month mark, my surgeon did another bone scan and was able to tell me that he believed the metal rod that was inserted into my remaining thigh bone was moving. It was too small. He had hoped I would have had more bone growth around it, but it didn’t happen. I needed to have the upper rod replaced with a larger one. I had this done in August of 2007. In addition to replacing the rod my surgeon cleaned up some scar tissue around my knee. I was in the hospital for 3 days, and this time my experience with the nursing staff was much better. The surgery was also successful.

Life now: I had in-home, out-patient and aquatic therapy during my recovery. I am still actually in recovery. I exercise daily now on my own, but nothing near what I used too. Mainly just lots of stretching, some treadmill, and finally back on my recumbent bike. I went off all my meds a couple of months ago because I wasn’t getting any relief from them for my knee pain. My surgeon gave me a steroid shot a couple days ago and we will see if I can get some relief for a while. There are many things I can’t do with my new leg, but I am still pushing myself everyday to see what new things I can do. My bend will never be more than 90 (feels like 80 to me), stairs are a big challenge, I have a slight limp, and my calf swells from lack of blood flow from the loss of my femoral vein, but I try to keep a positive outlook and see something good in each day.

Thoughts and Hints for Patients: This website has been wonderful. Many others were very scary and had way too much information. Talk to your Dr. and ask questions and press for answers. Know you are not alone.

Update in February 2009: In May of 2008 after months of continued pain and decreasing movement of my knee, my Omaha surgeon recommended arthroscopic surgery to “take a peek” at my knee cap, remove any scar tissue they could get to, and then go from there. I proceeded with that surgery in May of 2008. It was a relatively simple procedure; I was in the hospital for a few days and had a pain block in place. I returned home and for the next two months used an in home CPM unit. It wasn’t long before I realized that surgery was not the answer. The pain eventually worked its way back even more aggressively and I suffered each and every day. It was difficult to walk and the pain consumed my days and affected everyday living. The only way I know to describe what was happening, is to say that when I bent my knee, there was a visible shifting (of my kneecap?) and a “pop” that occurred as something seemed to settle back in place (you could feel it happening if you put your hand on the front of my knee as I extended it). It often felt as if something was wedged there or that possibly my knee cap was not tracking properly. Nothing relieved the pain. I was not taking any prescription pain medications. Advil, Tylenol, ice, heat, little activity, vigorous activity, regardless of what I did, nothing eased the pain.

As I neared the two year mark from my diagnosis I was feeling depleted. My surgeon in Omaha had no answers. I made copies of my films and medical notes, included a letter asking for help, and mailed it to the Mayo Clinic in Rochester, MN. And I waited, four months in all, before I received paperwork saying they would see me. That was in October 2008. Meeting Dr. Franklin Sim and having him look at my films, explain things like no one ever had, and telling me he could help me, made me see the light once again! I scheduled surgery for December of 2008. The plan was to go in to the knee, and resurface the kneecap and put in place a plastic cap device that would make my kneecap glide over my metal knee. I couldn’t wait. I would have done it that day if they would have taken me!

On December 3rd, 2008 I had my 4th surgery. It did not go quite as planned, however, much better than planned! While in surgery, Dr. Sim determined that I needed a smaller knee prosthesis as well as the kneecap resurface/plastic cap device, and he was prepared with the parts necessary. So, the surgical team basically reopened the entire incision (oh, it’s a real pretty scar now!) and took apart the prosthesis and replaced the knee, and one of the rods, and repaired my kneecap. Within a day I knew it was totally different. Painful, yes- but I could kick my knee out, and bend it with no pain what so ever. My bend is now comfortably at a 90 degree, I walk much smoother, and there is no popping or clicking of any sort. I was on crutches for about a month, but now I am driving, walking, shopping, and doing as much as my leg will allow in a day. I only hope it continues to get better with each day.