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

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: I first started with knee pain in October 2004, but my GP put it down to a strain even though I couldn’t remember falling or injuring myself. The pain got gradually worse, and I was waking in the night feeling as though my leg was on fire. My knee was hot, red and swollen. I kept going back to my GP but he kept giving me painkillers and telling me to come back in two weeks. Eventually I insisted on being referred to a specialist and had an X-ray at the hospital in February 2005. The X-ray showed “something suspicious” and I was referred to the Royal Orthopaedic Hospital in Birmingham for a biopsy, chest CT and bone scan. I was finally diagnosed with osteosarcoma in March 2005.

Treatment: I was about to get married at the time of diagnosis and my fiance and I had talked about starting a family. I was told the chemotherapy would probably make me infertile, so I wanted to have fertility treatment to store embryos before treatment started. But I was told that there wasn’t time to do this if I wanted to beat the cancer, so I reluctantly started chemotherapy straight away. I had two cycles of cisplatin, methotrexate and doxorubicin before my planned operation. I was expecting to have an endoprosthetic replacement but the tumour had grown too big so I had to have an above-knee amputation in July 2005. I then continued with chemotherapy, but my regime was changed to methotrexate, etoposide and ifosfamide. I finished chemotherapy in December 2005, just before Christmas.

Recovery: After nine months of chemotherapy I was physically and emotionally very weak, but I needed to start learning how to walk again using an artificial limb. I went to physiotherapy twice a week to help me do this and started out walking with two sticks, gradually progressing to one stick. On my wedding day in May 2006 I managed to walk down the aisle without any sticks, which was a huge milestone for me. I now walk without any sticks, although I do have a limp.

It took me quite a long time to come to terms with what had happened to me, and to adapt to my lack of mobility, but I found regular sessions with a clinical psychologist really helped.

Life now: In May 2006, five months after treatment finished, I got married to the man who had supported me through everything. It truly was an amazing day, even more so because we got married in the absolute knowledge that we could get through tough times together.

We went on a big trip around Australia and did loads of things I’d always wanted to do – horse riding along a beach, scuba diving, cuddling a koala! Having cancer taught me not to put off things and the holiday was a brilliant way to share new, positive experiences together.

I returned to work full-time and although my job had to be adapted a little for my disability, I soon felt as though I’d never been away.

I was devastated to be told that the chemotherapy had made me infertile during tests in October 2006 and this was a very difficult time. But happily I became pregnant and gave birth to my ‘miracle’ baby in October 2007.

I’m currently enjoying being a mum and loving the fact that my baby daughter is the centre of attention, instead of me!

Thoughts and Hints for Patients: If you’re lucky enough to have supportive family and friends around you, like I did – let them help. People are desperate to do things to make life a little easier – so let them. It takes a while to accept that you won’t be as mobile and independent as you were once were while you’re undergoing treatment, but things will get easier eventually.

Don’t expect life to spring back to normal as soon as treatment finishes. It takes time to recover from the intensive treatment, so give yourself time and don’t be hard on yourself if some things are more difficult than usual.

Diagnosis: I was thirteen and active in dance and track without a worry in the world, until my right knee started aching. It continued and worsened and my parents thought I had torn a ligament, but unfortunately that wasn’t the situation. I had a MRI and they found a grey area, then I went to the hospital for a biopsy which showed it to be malignant, and almost instantly I was put in the hospital to start my chemo treatments. This was the most awful experience. I wouldn’t wish it upon anyone, especially a teenager. I had no clue as to what was happening. I didn’t even know I would lose my hair until it started to fall out. I wasn’t the nicest child; I didn’t understand why this was happening to me and I was quite bitter at the time.

Treatment: I had chemotherapy 24 hours, 7 days a month in the hospital. I would get quite sick, and when I went home I didn’t get my energy back until about the time it was time to go back for more treatment. After six months of chemo, they performed my surgery. I had an 8 hour surgery with which they removed seven inches of my right tibia and replaced with a donor bone and then put a metal plate and twelve screws and an artificial tendon in my knee.

Recovery: I went through physical therapy on learning how to walk again with my new leg and working a strengthening my muscles and knee. It actually took me about ten years to accept what I had gone through, but I do love the fact that I’m alive and have my leg, even it’s an interesting looking leg. I definitely have had my share of problems throughout the years, with back problems from the crutches and favoring my left leg, and pain from arthritis in my leg and especially when the weather changes. But I don’t have the wear a brace anymore, and there is a minimal difference in length. So I was blessed.

Further Treatment: Four years after I went into remission, the bone that they replaced broke and I had to have another surgery. In Arizona, where this all first happened, the doctor had told me that if my bone ever broke that they would have to amputate it. But because we had moved top Florida and the doctors were a bit more advanced, they were able to save my leg by taking half of my right hip, sprinkling the bone into the break, and connecting my tibia and fibula to be like one big thick bone.

Life Now: Life now is great. I was told that I possibly would not be able to have children from the chemo, and I have a beautiful 4 year old daughter. And we are expecting our second in February 2006. I have aches and pains, a limp, and still may loose my leg in the future. But I am happy with who I am now, and God will get me through my future as He gave me a future!

Thoughts and Hints for New Patients:Stay positive! If I had not been so depressed and asking “why me,” I think I would have been such a better person and not made certain decisions in my teenage years.

Pray for strength, and accept your life as it is, and live that life to the fullest!!!

Diagnosis: In June of ‘88 (when I was 15 years old) I’d been having pain in my left arm — I thought I’d been hit by a softball and that’s what was causing the pain. Luckily, we were sent to Children’s Hospital pretty quickly and within just a couple of days I was diagnoses with osteosarcoma of the left humerus.

Treatment: I had 2 rounds of pre-op chemo (cisplatin and adriamyacin), following by an 8-hour limb-salvage operation where they removed almost my entire humerus and replaced it with a metal prosthesis. They rearranged all my muscles and removed the deltoid muscle. 4 more rounds of chemo followed.

All was well for almost 2 years — then I got the dreaded recurrence to the lung. They removed one thumbnail-sized nodule and I had an additional 10 rounds of chemo (Vp-16 and ifosphomide). Then, I went to MD Anderson in Houston and did an experimental treatment called MTP-PE that utilized the body’s own immune system to fight of cancer cells.

Recovery: I’ve had my share of scares (something showed up on alung CT about 5 years ago that ended up going away on its own). Had a scare at the beginning of 2008 with really bad arm pain, but it’s subsided. (It was most likely due to lifting my 14-month-old son regularly!)

Life now: I’ve been cancer free since 10/1990 and off all treatment since June 1991. I’m happy, healthy, married and have a 1-year-old son (conceived naturally — after one month of trying (I was sure I’d end up with some medical intervention given all the chemo I had).

I still have issues with doctors and hospitals and get anxious with every pain and chest X-ray I need to have.

Thoughts and Hints for New Patients: – Don’t be afraid to question doctors. They are not infallible.

- Learn how to work the system. If you’re not getting the answer you want, look elsewhere. My mom was able to get me a drug that helped my immune system bounce back by contacting people she new at NIH along with our congresswoman.

- Kill them with kindness. You’ll make a lot more progress if you’re nice to people — and learn everyone’s name — even the X-ray techs — you’ll be seeing them a lot. You never know when you’ll need a favor.

- Keep your own records. My mom kept detailed records during my admissions of when I got medicines and my blood counts. She knew when I was due for doses and got on the nurses ahead of time.