Diagnosis: During 1993 I bought a small trampoline for use at home. I’d read it was good exercise and was keen to keep fit. I started to use it daily and almost immediately I experienced an excruciating pain in my left leg. It was like a bee sting that lasted ages, so severe that it made me stop in my tracks and gasp. Once the pain had been triggered it didn’t go away – I intermittently felt it. I was no longer able to use the trampoline so packed it away and made an appointment to see my Doctor. He suggested I’d pulled a muscle on the trampoline – even though I knew it wasn’t that kind of pain. The pain continued and became more intense and more regular so that I was walking with a limp and could not walk any distance. It felt like a rat was gnawing the bone of my leg all the time. During this time (over two years) the Doctor kept fobbing me off and not taking my pain seriously. Then one day in complete despair I went to his surgery and refused to leave until he sent me for an x-ray. The x-ray showed a mass inside the bone of my Tibia. I then was sent from one specialist to another each misdiagnosing the mass. I had scans, MRI, more x-rays. Eventually having painfully tramped all over England seeing these specialists I was referred to Mr Steven Cannon (privately) in London. He recognised the mass for what it was immediately and said I needed urgent surgery.I had been feeling depressed about the pain and felt helpless despair but once it was diagnosed and was to be treated the depression lifted.

Treatment: Within a few days I was in hospital undergoing surgery. The tumour was Chondrosarcoma grade 1 and it was surgically removed in December 1995. The leg was not strengthened at the time as it was not thought it was necessary and it was also thought that bone cement might disguise a recurrence. I was in plaster for eight weeks.

Recovery: I was surprised at how wasted my leg was when the plaster was removed. Also the tumour had been near the ankle joint and as a result the ankle joint lost a lot of its flexability initially. After the inital healing process I had several months of physiotherapy which improved flexibility of the ankle joint.

Further Treatment: Over the first five years I had regular follow up x-rays, sometimes scans or MRI. I found towards the end of the five years that I was getting what I was later informed was “stress pain” – because the bone had ben weakened by surgery and the cavity left from where the tumour had been situated had not filled back in. So in 2001 I had further surgery – curetage and biopsy and bone cement was used this time to fill the cavity. Again I was on crutches initially and had phisiotherapy after the healing time. I continue to have follow ups but am currently free of recurrence 10 years later.

Life Now: My life is completely normal although I do have residual problems – nothing I can’t handle though! If I do any serious walking my leg aches afterwards (very uncomfortable) the ankle joint swells on that leg if I fly, in hot weather or if I exercise a lot. I tend to wear a support stocking on it and raise it when I sit down if its bad! I still wear stilletto heel shoes though when I’m going out!!

Thoughts and Hints for New Patients: Don’t panic! Being diagnosed is good because then you can start to figure out how to treat your condition. It was being in pain without being diagnosed that I found awful and depressing – there were days when I thought I would never walk properly again and nights when I woke in a muck sweat thinking I was going to die.

I believe knowledge is empowering so I recommend you find out as much as you can about your condition so that you can make informed choices. Make sure you’ve got plenty of support (maybe join a support group because they tend to have lots of information and expertise you can draw on.)Don’t just rely on your family and close friends because it can be hard for them too. And finally remember that: COURAGE IS NOT THE LACK OF FEAR – IT IS THE MOVING FORWARD IN SPITE OF IT. Take care.

I began having leg pain in 1992 when I was 20 years old.  It was a strange pain that I would notice when I was pressing my foot on the accelerator in the car.  I had a bone scan that showed a hot spot on my tibia.  I was diagnosed with a “stress fracture” and ran around in a cast, a boot, and a leg brace for almost a year with no improvement.  A tiny lump started to appear in my x-rays and my doctor felt it was probably new bone growing in to repair the fracture.  The lump grew VERY rapidly and I was referred to an orthopaedic oncologist.

Surgery was scheduled immediately to remove the lump and the frozen section came back negative!  Unfortunately when I went back a week later to have my stitches removed I was told the biopsy was positive and I was diagnosed with Periosteal Osteosarcoma of the right tibia in October of 1993.

Treatment: I had limb salvage surgery a few days later.  Most of my tibia was removed and replaced with a metal rod.  I had a bone graft from my own hip.  Ouch!   I was in a wheelchair for a while, then crutches, and after physical therapy I was walking normally again.  My major recovery took about a year.  Although the situation interrupted my college career, it definitely made me realize that I was a much stronger person than I ever thought I was.

Life Now: My life is good and i guess you could say normal.  The GREAT news is that I just got married to the love of my life in November 2008.   I love gardening, reading, surfing the web, ans spending time with loved ones.  Believe it or not, I even performed in a circus, juggling and WALKING a tight rope!

I am so glad I found this site.  I wish it was around in ‘93!  I am thankful it is here now to support new patients.  It is so hard to find information about sarcoma.

I definitely always have the cancer in the back of my mind, but in a way I am glad I had the experience.  It’s hard to explain.

I actually knew I had a tumor in my leg, because when I was 12, I cracked it while I was running. The specialist at that time said that it was benign and not to worry about it, because something that is benign would not turn malignant; so life went on. In January of 2003, my shin and knee were extremely swollen and I began to have daily pain that would even wake me up at night, but being the stubborn person that I am, I didn’t actually go into the doctor and complain until June 2003. Eventually I was referred to a specialist who (in August) said the best thing to do was a biopsy so we know what we were dealing with. A week after the biopsy I was told it was Osteosarcoma. I was actually told on a Friday and by Monday I had an Oncologist, was in the hospital on Wednesday having a catheter placed in my chest and was to report on Monday morning for my first round of chemotherapy. The first day of chemo was September 19, 2004. WOW what a week! The initial tests done were an MRI, CT scan, Bone Scan and many different X-Rays. It all happened so fast – I actually don’t know how I handled it.

Treatment: I had 7 rounds of chemo before surgery. The chemos were Doxorubicin, Ifosfamide, High dose Methotrexate with Leucovorin rescue, Cisplatin. I had about 3 weeks off before surgery so I would have enough strength to make it through. Surgery was on January 6, 2004. I had limb salvage surgery which consists of inserting a titanium rod into my femur, taking out my knee and replacing it with a prosthetic knee and removing my tibia and in it place titanium rod. Basically I am titanium from 3 inches above my knee all the way down to my foot. I was in the hospital for 7 days, pretty much drugged and was not allowed to bare any weight on my leg until March. Two weeks after surgery I reported back to my oncologist for the next 13 rounds of chemo. Same as listed above plus Etoposide. Out of the 13 rounds I was suppose to have I only had 5 because my body would know longer recover after each treatment. My blood counts would remain too low and the risk of infection was to great so my doc and I decided we would have to take the chance and end chemo. YEAH, that was actually a good thing as far as I was concerned. My last chemo was June 23, 2004.

Recovery: In March 2004 I began physical therapy — OUCH! I am still in it! I have lost a lot of mobility. I can not bend my knee past 90 degrees. I can’t make it completely straight. I can walk, but I still have a lot of pain so walking is not the easiest thing to do. I probably will never be able to run, jump, squat, kneel, crawl…anything having to do with the knee. I am still missing a lot of feeling through my shin and ankle, but that might not stay that way my docs are not really sure. To this day I continue to walk with a brace, because my knee will buckle pretty easily, especially when I am tired. I cannot bend it enough to go up or down stairs, but I am constantly trying and working on that. I end up with back and hip pain because I tend to swing my leg out to the side when I walk which messes up my gait pattern, so my PT works a lot on my back and trying to keep it aligned. Currently in PT, I am working on regaining my balance and coordination. I was to be pretty good at both those things, but now my PT and I fall over laughing when I try to do something new and I about fall over. It is pretty funny and entertaining! I actually like going to physical therapy. Even though it is painful I feel as though I am working on improving myself so it is rewarding and I feel good for going!

Every three months I have my CT scan of my lungs and X rays done of my leg to check. Knock on wood – everything so far has been great!

Life Now: Things are definitely different now. I can’t say in a bad way though just different. I miss things that I use to be able to do like playing volleyball, sitting in the back seat of the car (I can’t bend my knee enough now to sit in the back), and jumping or walking without pain. But I have learned so much more out of life. I enjoy going to work. I enjoy friends and family. I enjoy who I am now and what I have accomplished with my life. I listen to friends or family complain about things that now I feel are just not worth thinking about. I listen to people at work complain about being there and my thought is work is the best place on earth. I was off for so long, still not back full time, but I am happy that I am able to work and not sleeping all day because of medications, or stuck in the house because I was Neutropenic, or (worse) stuck in the hospital for weeks at a time because of infections, low blood counts or blood pressure being so low that everytime I would put my head up I would pass out. I don’t miss those days, but those days taught me how to cherish what I do have in my life. To live each day – not in the past and not in the future. Your life does change, and after treatment is almost as hard (if not harder) to deal with than during treatment, because your life does change. But you learn how to live again, hold your head high, and yell that you are a SURVIVOR!

Thoughts and Hints for New Patients: Just take each day as it comes. I thought that once I knew what to expect from the chemos that I would be able to plan for it each time I had a repeat. But the more chemo I had the more different my body would react to it. I would never know what to expect (in my situation) even though it was the same chemos same doses. At the beginning I tried to be “strong” and fight through the nausea, vomiting, fatigue and all the other wonderful side effects but then I realized there is no reason to fight through it. TAKE MEDICATIONS to help RELIEVE THE EFFECTS!!! If one doesn’t help, ask for another. I definitely ended up with my favorites! I also learned to listen to my body. If I was tired, I slept. If I was hungry, I ate. The best thing is try to eat healthy, but in my case healthy foods would just make me sick. I always craved McDonald’s cheeseburgers and Taco Bell Tacos, so when I was able to eat, that is what I ate. It was better to eat something instead of nothing, so let your body tell you what it needs. And probably most important: talk to your doctors, feel comfortable with them, you see them a lot. Ask questions and get answers. Have a way to contact them (and the chemo nurses too), they become a huge part of your life – mine still are!

Update (February 2009): Since diagnosis in 2003 and surgery in Jan 2004 things have been challenging. A year after my limb salvage I had to have another surgery on my knee which was for replacing the patella- in other words putting a plastic button between my knee cap and the titanium knee. We thought that would fix the constant pain that I was in, when in actuality it solved one problem just to realize I had more than one spot that was painful. Struggled through that recovery and was still not getting better in regards to pain or mobility so after another year of tests and scans it was finally determined that I had a cyst growing behind my knee. The more the cyst grew the more it compressed my nerve against the titanium, so once that was discovered I had another surgery to remove that and to explore the functioning of the nerve that was being squished. That was in Nov of 06. Once again started a different routine for PT and worked hard at regaining some mobility, then a few months later during a routine ct-scan a spot was found on my lung. Everyone was convinced that it was “just a spot” because it had been so long since I had had treatment and the possibility of it being a met that far along was small. We watched it and a couple months later at a follow up ct scan it doubled in size. My doc didn’t like that it was growing although still thought it was nothing to worry about but he wanted to take it out. So in March 07 went in for another surgery and had the spot removed. Found out a few days later that it was definitely a MET, but clear margins were obtained and at this time that was all that needed to be done. A month after that had another surgery on my knee to remove the scar tissue in hopes that would help decrease my pain.

So I guess to some it up I have constant pain in my knee. I can only bend it about 60 degrees on a good day and have tons of problems with walking do to pain and the inability to bend my knee. We are not sure why I have so much pain.

Throughout all of that though and the continued doctor visits and surgeries and questions I have met the love of my life and we married in 08. We also found out that we are expecting a baby in March 09, which came as a COMPLETE shock to us because I was always told that due to the chemo I probably would not have kids. It goes to show that things just happen especially when you least expect it. Pregnancy has been hard because of course the pain is still there and now I can not take any of my pain medications and there have been some new issues with my leg that I think are effects of what my body is trying to do to support the baby, but overall the baby is looking healthy and growing like a weed already–just can’t wait for him to be here.

All of my docs talk to each other and they continue to support me and my situation to the fullest. I feel so confident that they are all working together to make sure that the baby gets here safely and that my health and leg well being is all part of plan. I think it is VERY important to make sure you have a good relationship with you doctors and that you are able to talk to them about anything.

Diagnosis: The first question everyone asks when I tell them that this is primarily a kids cancer is “How did you find out you have it?” I literally woke up one morning and fell out of bed. I went to bed, and the next morning tried to stand up, and fell. I went to my primary doc, and he told me that I sprained my calf. I refused to take that for an answer, and requested a sonogram for a blood clot. You know there is a major problem when the radiation tech gasps and then says hold on. That was October 28, 2005. After many sonograms, CT’s, MRI’s, and being sent to the wrong doctors, I finally received my biopsy in November (right after I turned 32). Two weeks after my biopsy, I had to call the doc to check up. He explained to me that it took so long for the results because they had to send them to a pediatric hospital for confirmation. I was at work when he told me, and I think I fainted. Not too sure. That was December 1 2005. Ewing’s sarcoma/PNET completely localized, no mets, about the size of a large egg in my calf.

Treatment: The next 10 days included more tests, and having my port inserted, and paperwork for my job. I started chemo on December 12, which consisted of vincristin, epirubicin, and ifosfomide/mesna. The CTRC is an outpatient clinic, so I had to take this backpack home for 24 hour treatment. These were Monday-Thursday, half-treatment on Friday with a disconnect. Took a week break and then started again. From what I have seen on the papers, I was taking the “dose-density?” which was 2-2.5 times the “typical” adult treatment. Merry Christmas to me, my hair fell out 2 days before and I was neutropenic. I did this 4 times out of 6, and was cut short from my body being exhausted. I had surgery on March 9th, my tumor shrank 90% and was completely dead. All they did was remove a long muscle, carve my tibia out (imagine a lincoln log), remove some nerves, and totally restructure my tendons and all. Took a month break, and then had 6 sessions of chemo the same way, but every 3 weeks instead. I was considered the oncologists dream patient, because I was only terribly sick one time, landing me in the hospital for 3 days. Other than that, I had virtually no nausea and only lost 25 pounds.

Recovery: Since my tibia was so cut up, I was never given P.T. I have a beautiful scar that is about 9 inches long on the inside of my leg. The only things I can’t do are things that require me to be on my feet for a long time, or things that will stress the muscles. However, I am still having some pain management issues, which from what I have been told are not uncommon for the amount of bone that was removed. My moon boot is my best friend now, but I need to find a way to wash it!

Life now: I returned to work in July 2006, and have been fortunate enough to stay on even during a massive layoff. I make sure every day to remind them that I still have some unknown side effects, like my vision being crappy or chemo-brain. (That’s my excuse…what is theirs?) My boyfriend has got to be the most patient man in the world, he has never complained to me during the whole process. I feel for our friends! It’s nice to know that I seem so normal that people forget that I was sick.

One thing I realized is that you have to learn to work “the system”. Ask human resources about a leave-bank, or medical leave before you take FMLA. Take advantage of your company’s assistance programs, if they have any. If anyone offers to help, TAKE IT!

Thoughts and Hints for Patients: Take the pain meds and all of the anti-nausea meds, they give them to you for a reason. If something doesn’t feel right, question it. That’s what the doctors and nurses are getting paid for. Get involved in your treatment, be persistent and always have someone else with you in the appointments. You are your only advocate.

Most of the information I found about my cancer is so negative, and there is such a thing as information overload. I have trained myself to stay positive, because it is so easy to let this consume who you are. I also trained myself to allow myself to have a “pity-party” day. But most of all, it has made me realize that this is a day by day battle. If this is the worst that can happen to me in my lifetime, that’s fine. That means it’s one less child that has this terrible cancer. Bills are only money, credit can be repaired, and work will always be there, but I only have one lifetime to enjoy, so I better get busy! By the way, since this is a pediatric cancer, when do I get my lollipops and gameboy?

Diagnosis: During October of 2006 my mother was dying of lung cancer. While caring for her, my knee started to ache. It wasn’t too painful, however I found myself taking Motrin to help with the pain. I attributed the pain to my trying to move my mother into different positions to make her more comfortable. I thought that maybe I had twisted my knee. There was no swelling, just a dull ache. Heat and cold did not seem to help. My mother died on October 18th and after her death the pain became worse.

I am very stubborn when it comes to going to the doctor, so I kept putting it off and began taking more Motrin. I was teaching at the time and my third graders started noticing that I was limping. They kept telling me to go to the doctor. Finally, on Thanksgiving morning of 2006 I went to the ER at our local hospital. I could hardly walk.

An x-ray was taken of my left leg. When the ER doctor examined me he informed me that I had a “tuck” in my leg and instructed me to do exercises that involved bending my leg towards my torso. I explained that that would be impossible as the pain was so extreme. He had not even viewed my x-rays. I asked him if he had looked at the x-rays and he told me that he did not need to because he already knew what it was. My husband and I were so angry. Finally, he looked at the x-rays and informed me that there was something in my leg that shouldn’t be there. Next, he ordered another set of x-rays to be done on my right leg as he wanted to compare. Once he compared the two he informed me to go home, do all of the exercises and call my doctor on Monday.

I went home and stayed off my feet all weekend and did not attempt any of the exercises. On Monday I went to my family doctor who believed that I probably had a benign bone tumor. He referred me to a bone surgeon and an appointment was scheduled for that Friday. When the surgeon entered the exam room he had a very concerned look on his face and he explained that in his 29+ years of surgery he had never seen anything like what was in my leg. He told me that he would not touch me as he had no idea what he was dealing with. He told me that he knew of only two doctors in the state who would possibly take my case. On Monday I was contacted by the University of Michigan and by Wednesday we were meeting with a surgeon. She explained to us that after looking at my x-rays, and MRI she believed that I had a benign tumor and that she would remove it. She also informed me that the tumor was the size of a grapefruit and located inside my upper tibia.

Treatment: The tumor had literally eaten away at the bone which was now the thickness of an eggshell. She said that it was a miracles that I had not broken it and that had I done the exercises the ER doctor ordered I probably would’ve broken the tibia. I was told to keep all weight off of the leg as it was so fragile it could break at any time. When I went into surgery to have the tumor removed the surgeon took a portion of the tumor for a biopsy as it looked suspicious. I was sent home that evening and told to wait for the pathology report.

Two days later I got the call…I had high grade osteosarcoma. On January 8th 2007 I began chemotherapy at the University of Michigan. The chemotherapies made me extremely ill, especially the high-dose methotrexate. Following several rounds of chemotherapy I had limb-salvage surgery on March 27, 2007. My surgery was successful, however several weeks after surgery I developed a staph infection and the doctors worked to save my leg again. I spent over a week in the hospital before the doctors were able to get the infection under control. I began chemotherapy again three weeks after my surgery. The treatments finally ended on September 14th 2007. The treatments should have continued for a few more months, however I was having some side-effects including hearing loss, and my oncologist was satisfied that the cancer was gone. On January 16th, 2008, I was told that I am officially cancer-free!

Recovery: I began physical therapy almost immediately following my surgery. PT has been grueling and difficult. At first, I could not bend my leg past 18 degrees. Now I am able to bend up to a 104 degree angle with assistance. I am currently going to PT three or more times per week. Recently my PT discovered that my left leg is 3 cm. shorter than my right leg. She put lifts in my shoes and we were amazed at the difference it made. My gait is much better and the pain in my leg and left hip has really improved. Now, when I go to therapy I am working on my own to strengthen my leg muscles as well as my ankle strength. I have a noticeable limp and my leg is painful at times. There are things I cannot do, and may never be able to do again, but I thank God and my doctors for giving me back my life!

Life now: As a result of the cancer I lost my job as a teacher. This devastated me almost as much as the diagnosis. I had been a teacher for nearly 13 years. Never did I think that I would lose my job because of this terrible disease. As my husband has said many times, he believes that I handled the cancer diagnosis better than the job loss. During my suffering I kept looking to the future and being able to go back to my classroom and continue teaching. When I lost my job I still had several months of chemotherapy to go through. Losing my teaching job made the treatments even more grueling. It was also disheartening and confusing to realize that some people lack so much compassion for others. I am very lucky to have a wonderful husband, family and friends who have continued to support me. I am very fortunate to have a wonderful husband and three beautiful children who are the light of my life.

Thoughts and Hints for Patients: During my treatments I was inspired by many. My family, friends and students sent cards made foods and really kept me going. I will always be forever grateful to them for that as they helped me to heal. Never give up! There will be good days and bad. Live life to the fullest. Do not sweat the small stuff. Most importantly, always remember to LIVE, LAUGH and LOVE!