I spent hours and hours searching for people online. I went to all of the major cancer websites and sent personal messages to sarcoma patients and survivors, begging them to write to me about their experiences and to help me navigate my new life. A few of those survivors came alongside me and helped in the search. Very soon, we realized that we were gathering knowledge that could benefit other people.

And so this site was born. Many of our very valuable members were recruited, slowly, with much effort. Some of them were barely willing participants – at first. It was almost like we had to sell them on the idea of such a specialized community of people. Then they realized just what an awesome community this really was, what an opportunity it was to connect with others who really understood where they had been.

I cannot begin to describe the effect that this community had on my life. These people have been my inspiration, my teachers, and my students. There were many late nights spent chatting about treatment options, clinical trials, and relationships changed by the threat of death. We discussed the worst kinds of pain and the best kinds of joy. We LAUGHED and laughed hard about things that others would never understand – our need for anxiety meds, our inability to accept what was happening to us, our bizarre interactions with people who could not understand our appearance, our disabilities and hang-ups.

I flew to California, went to camp in Montana, and drove to upstate New York to meet friends from this group. We shot silly string at each other and slept in bunk beds beside each other wearing glow-bracelets. There was the time when three of us spread out on my living room floor sending cards to others in the group who were suffering. One night, an ABC friend came from out of town, and we sat side-by-side on the couch, both logged into a “live ABC Chat,” drinking wine and laughing while we typed. A couple years later, I would drive six hours to a memorial gathering and cry for that same friend. Today, stunning pictures from that journey’s sunrise hang on my walls.

It was impossible for the few of us who started this site to maintain that same level of energy forever, the energy that it takes to recruit new members and to find all of the resources that might help today’s patients in their journeys.  Several of us needed additional surgeries, had recurrences, and dealt with late effects. We were joined by new friends who made their own special contributions, but over time our group has become less active and engaging. And many of our lives have become full of other things, new and happy things.

And so this site will now become an archive, a legacy, a snapshot in time. It is a gift from many people who are still living, and some who are no longer with us. I hope that the site will be useful for visitors who come along looking for hope, looking for the silhouettes of survivors ahead of them. Because there ARE survivors of this disease, people who have found and embraced a “new normal” even with disabilities, pain and recurrences. There are even young adults whose lives were completely interrupted but have now regained momentum and joy. And their stories here are relevant, because bone sarcoma treatments have changed very little over the years. There is much hope to be found here – take a look around! You’ll find 30-year survivors, miracle-pregnancies, and surprising happiness.

If there is one request I leave to the future patients and survivors who visit this site, it is this: understand your power. People with sarcoma are rare. It is hard enough for us to get through our disease and move on. It would be easy to do something for a general cancer cause every now and then and think that we have done our part. But your power – and my power – lies in our ability to increase sarcoma awareness and research. If we do not do something about this disease, all of the people who come after us will deal with the same brutal and often ineffective treatment methods that so many of us have endured for the last 30 years. The future generations deserve better.

So if you want to do something for a cancer charity, consider advocating and donating to sarcoma-specific research. I personally recommend the Liddy Shriver Sarcoma Initiative, because I know that nearly 100% of your donation will be used for the best sarcoma research studies, wherever they are undertaken, and will not be used for fund-raising or salaries or hospital overhead expenses.

It is a shame that the very patients who struggle with this disease are the ones who are left holding the banner to cure the disease.

Then again, it’s a powerful opportunity.

Much hope to you and yours,
Mary Sorens
Founder, ABC Survivors

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

Diagnosis & Treatment: I am an LPN working in a nursing home. In December 2008 I started pushing my med cart and noticed sharp pains in my arm. I knew that this was not normal so I went to the ER when I got off work. The ER doctor repeatedly asked me if I had fallen, twisted, or injured my arm. I kept telling him that I had not. He would not x-ray my arm at this time. He told me that is was a sprain and gave me Ultram and a splint to wear for 3 days. Before the 3 days were up my arm had started hurting worse and Ultram was doing absolutely nothing for the pain.

At the beginning of January I went to my family physician and he x-rayed my arm. Of course something showed up but my doctor wasn’t sure (or wouldn’t say) what it was so he ordered an MRI. At this point no one would tell me what was wrong and I had become very upset. After the results of my MRI came back my doctor called and said that I needed to see an orthopedic doctor because something showed up on my MRI and it was 4cm long and 1.5cm wide. The orthopedic doctor is the one who finally told me that it was a bone tumor but said that he was not qualified to take care of it so he sent me to UAB in Alabama. My appoint was Feb. 9th, and the bone tumor was removed on Feb. 10. It was a grade II chondrosarcoma.

Life Now: I am now in therapy because I was not able to pick up, or squeeze, or use my arm for anything. My next appoint is May 15th. This was all very disturbing to me because there was no history of cancer in my family. My husband and mother have been very supportive through this terrifying time in my life. I put it all in GODS hands and pray daily that it does not come back.