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

Diagnosis: I went to my GP in late 2002 with chronic pain in my right hip. An x-ray indicated a change in bone density. MRI and subsequent exams pointed to a bone tumor. Biopsy confirmed that it was osteosarcoma.

Treatment: I had a radical femoral resection with hip replacement and no chemotherapy. My experience was positive and uneventful, under the circumstances.

Recovery: I spent three days post-op in the hospital, then about eight weeks at home recuperating. I had six weeks of physical therapy that began about two weeks after the surgery.

Life now: I have some minor limitations to the movement of my right leg, as the muscles and tendons are not attached to real bone anymore — and they’re not attached the way God did when He put me together. I had my surgery in Feb. 2003. On Labor Day 2003, I hiked 1.8 miles in the hills of Colorado. A couple of weeks later, I did a hike that involved 1,800 vertical feet in elevation in about a mile of walking. I use a walking stick when I hike. It’s not a bad idea for anyone, hip replacement or not.

I live a pretty normal life. My job does not require any particular physical ability. However, I swim in the summer for exercise. In the winter, I work out on a stationary bike and lift weights (including leg presses). I can walk and even run to catch the bus, although I do not run for recreation.

Thoughts and Hints for Patients: If it hurts, go tell the doctor. I tried to shake off my pain for six weeks before giving in. I was fortunate that mine had not metastasized. Ask your doctor questions and keep asking until you get answers you can understand. Get educated, but be careful of what you read on the internet. It might be accurate, but not applicable to your situation. Don’t look at still photos or video of orthopedic surgery unless you have a strong stomach. Osteosarcoma is not an automatic death sentence, nor is it a guarantee that you’ll be disabled for life. Advances in treatment are making not only survivability a much better bet, but a healthy, productive and largely unimpeded life after treatment. But you have to have it treated.

Diagnosis: I began having shooting pains in the fall of 2002 in my right femur while I was attending college full-time at the University of Kansas. I was an active 22 year old at the time and had no reason to suspect that there was anything wrong. I loved to run, was always pretty active and never felt any physical limitations growing up as a kid.

After steady pain, I decided to make a visit to my general physician and see if he could provide any insight into the pain. He said he thought that I might have a “baker’s cist” behind the knee and an MRI would tell us if that was the case.

The MRI came back negative and showed no signs of anything abnormal. Following those results he decided to send me to an orthopedic doctor in hopes we could find more answers. The doctor had some ideas of what he thought might be wrong and proceeded to send me through two MRI’s (one of my back, one of my lower leg) and one CT scan of my pelvis area. The MRI’s came back negative and the CT scan showed some enlargement of the veins in my pelvis.

The doctor told me that there wasn’t anything conclusive that there indeed was anything wrong. He said I would need to “wait until whatever it was got worse” so they could diagnosis it. Discouraged, I left the doctors and dealt with the pain for the following year.

It was not until I graduated college and moved to Chicago that I decided to once again follow-up on the pain I was having. With new insurance from a new job I went to a new general physician and explained my story. She began to examine the area where I said I was having really bad pain (mid-femur area) and she made an appointment for me to have an MRI of the area the next day.

I was at work on a Friday in February 2004 when the doctor called and told me to sit down. She said that there was a grapefruit sized tumor on my right femur and in her opinion amputation might be the best option. I had no family in town as I had just moved, so I did a lot of phone calling and spending time with friends to soften the blow.

My doctor called me the following couple of days and let me know that there was an orthopedic oncologist who was trained in bone salvaging…the concept of doing all that can be done to keep one’s limb from amputation. A few weeks later I met with Dr. Walter Virkus of Rush University Medical Center here in Chicago. He was great and said he’d do all he could to save my leg. We did a biopsy and found out the tumor was indeed periosteal osteosarcoma. Next steps…surgery.

Treatment: I had my first surgery April 8, 2004 to remove the orange-sized tumor I had on my right femur caused by periosteal osteosarcoma. The surgery was 7+ hours and Dr. Virkus and his team of specialists removed 9 inches of my femur bone, replaced it was a cadaver bone from a donor and inserted some metal rods to help support the femur (see MRI scan photo). I stayed in the hospital for around a week with a 17 inch scar running from my knee to my hip. I was released from the hospital and taken home where I was on crutches for 3 months and not allowed to walk with my full body weight. I had home health nurses, family flew in to stay with me and I began home and outpatient physical therapy.

I went through 3+ months of physical therapy to learn to walk again and get mobility. It was one of the most painful experiences of my life but at the same time, a great lesson for me to realize my internal strength.

I began to walk again with no limitations in July 2004. I had worked so hard that I could now walk without anyone even noticing that I had cancer – which was always important for me. I began to work out 3-4 days a week and things remained well until April 2005.

Recurrence and Metastasis: In April 2005, I went in for my one-year check-up and doctor told me that there was another small growth in my right leg and we would have to remove it. On May 5, 2005 I had a small follow-up surgery and the growth was removed and I was on crutches for 2 weeks and back to normal within the month.

Things remained well until June 2006 when my scans once again showed that a tumor had returned in my femur area, as well as a small spot on my pelvis. Since this was my second recurrence, I met with an outstanding oncologist (Dr. Paul Kent) at Rush University Medical Center here in Chicago. I underwent 12 weeks of in-patient chemo in hopes of shrinking the growths in my leg and pelvis. Once I completed chemo, we moved into surgery and I had the growth removed, as well as a bypass surgery on the veins and arteries in hopes of preventing any further recurrences.

After the surgery, pathology results showed there was no significant decrease in my tumors due to the chemotherapy I had just completed. It was discouraging; however you move on and do what you can. It was recommended post-surgery that I undergo radiation therapy. I underwent 5 weeks of radiation treatment and recovered fully in January 2007.

Things seemed great for a few months until April 2007 when I had my third recurrence. This time I had a spot in the soft tissue of my femur and two nodules on my lungs. I had VATS lung surgery on April 20, 2007 by Dr. Michael Liptay of Rush University Medical Canter here in Chicago. He was amazing and we were able to remove the two nodules without major complication. I healed up from the lung surgery and we decided to move forward with more chemo, this time more aggressive doses. We decided to leave the tumor in my leg as a marker so we could determine the effectiveness of the treatment. Mind you, I had 3 previous surgeries on the leg, so going in to remove it would be risky and proved to not be successful in the past.

I’ve undergone 6 months of the more aggressive chemo (outpatient, 5 days a week, 8 hours a day) and we had some successes (one tumor disappeared completely) and some loses (two more showed up). The results were mixed and I decided to stop the chemo treatments in October 2007. I began to recover for the next few months, building my system back up.

In February 2008, I went back in for another scan/check-up and we discovered I had a new lung nodule – my fourth recurrence and second in the lungs. The nodule was small and we monitored it closely and in April 2008 it had doubled in size; however still small about 1.5 cm. We also found a second nodule that was 4mm in size. Currently, I’m still monitoring the growth rate and making a determination when/if I want to take these out with another surgery.

Life now: My life is actually great. I still work full-time in a marketing division and enjoy everyday. I hang out with my friends, talk to my family daily and look forward to what the future can bring. The weather is great in Chicago and I can’t wait to enjoy the summer!

Thoughts and hints for new patients: One of my favorite quotes is “You have to accept whatever comes and the only important thing is that you meet it with the best you have to give at the time!”

Diagnosis: I was 19 years old when I was playing soccer. I was running down the field and I heard a snap and then sharp pain coming from my second toe on my right foot. My toe just broke!

I went to a doctor who did an x-ray and said that something was wrong with my bone, it was as thin as an egg shell. He sent me to a specialist who had me go through a bone scan. There they found a sizable tumor in my right proximal femur.

Treatment: I went to surgery in September of 1990 where they removed the bone in my toe and replaced it with a cadaver bone. They curretaged my femur and sent me on to PT. My diagnosis was Encondroma. A benign cartilaginous tumor.

In 1997 I began to experience pain in my femur. I had to put my wallet in my left pocket instead of my right. It hurt to sit or sleep and I began to be concerned. When I went to have it checked in Feb 1998, I was referred to an orthopedic oncologist in Salt Lake City. After a biopsy, the doctor diagnosed me with a G2 chondrosarcoma. He curretaged the femur and reconstructed it with bone grafts from my iliac. He placed a large screw that went in at the proximal femur and extended into the ball. A plate was inserted that ran down the side of the femur and secured with screws. In October 1999 I had the hardware removed due to excessive pain and irritation.

Life Now: In January 2008 a new tumor was identified in the ball of my right femur. It is in a difficult place to perform a biopsy and so no diagnosis has been handed down. I am in pain. It hurts to sit, sleep be active and live. I am scared that I may have to lose my bone to a prosthetic. I am 38. I have lived with bone tumors and the pain associated with it for almost 20 years now.

Thoughts and Hints for Patients: You never know what life is going to hand you. There is no time to harbor ill feelings towards your family and friends. Mend your relationships and be an example of strength and courage for them. I see that me having this bone tumor problem is a lot harder on my wife and kids than it is on me. Do your part to support them during this difficult time.

Allow them to help and be a part of your struggle. Be loving and kind and forget about yourself as much as you can. It is a tough road, but there are so many beautiful things you see in others and how they show their love to you that it makes the experience worth going through. You also truly discover who your friends are when you hit rock bottom.

Best of luck,
Aaron

Diagnosis: My ‘experience’ started over five years ago, I was extremely active in most sports including running, skiing, hiking and baseball. I first noticed my symptoms as pulled groin muscles that, when I checked with a doctor was told to rest for a couple weeks and slowly work up to your normal activities. I found that the occurrences became more aggressive and I would give the injury more time to heal and be less aggressive at my therapy. In July of 2004 the pain and frequency of my muscle pulls was keeping me from sleeping and I noticed deep muscle and tissue aches. I had stopped running for about a year and my exercise had become minimal for about a year. I’d visited a doctor several times, but now as I look back I didn’t let the doctor diagnose my injury I told him that I knew it was muscle pulls or tares. Finally it got to a point that I could only walk with a more than slight limp and went in for X-Rays. At the time I had switched jobs and was working as a contractor without insurance. After the first x-ray the doctor came in and told me I had a crack in my femoral neck, but that isn’t what I should be concerned with. The top of my femur looked like a ghost bone, and completely bulged out. I was put on crutches and given an appointment to see a specialist the following Monday (it was a Thursday when I went in). Over the weekend I was traversing some stairs with my new crutches and the crutch slipped of the stair and my full weight came down on my leg snapping my femur. I was rushed to the hospital and put in traction through the weekend. On Monday they went in and got a graph and inserted a ‘nail’ through my femur (not set) so I could be more comfortable. I was in the hospital for five days, on the fifth I found out it was cancer and I would need to have a partial femoral replacement.

Treatment: I found out that the type of cancer I had (Clear Cell Chondrosarcoma) was unresponsive to Radiation or Chemo and my only option was to have the affected area removed. Surgery was scheduled for the following week and everything went well. I was again in the hospital for another week and sent home. Two weeks later I was having severe pain and stuck it out till my follow-up two weeks later. It was found that I had a staff infection and needed immediate surgery to remove it. Another five days in the hospital and I was again sent home.

Recovery: This time I was able to begin recovery and was using a walker for about two months, moved to crutches for another three months then was able to start working again, I’m in the computer industry, luckily, so I didn’t need to do anything physically strenuous. After the crutches I went to a cane that was necessary for the next three months and now I use it on and off depending on what I’m doing. My upper thigh muscles and glut muscles where re-connected to the metal prosthesis and due to engineering needed to be placed a little differently than natural. I have a pronounced limp, but it’s slowly going away with increased muscle strength. I’m not sure when I can say I’ve recovered but I know there’s continual progress. I’ve been in to the specialist every three months without sign of recurrence.

Life Now: My life is becoming more normal all the time, I’ve had some issues not being able to do what I used to but taking things in small pieces has helped. My career is going great, I’m on permanent now with insurance and actually got some incredible help with my bills from the hospital. I’m mostly active again and have moved my activities into the pool. I spend a lot of time swimming and walking.

Thoughts and Hints for New Patients: The only way to put something like this behind is to know that life will always be changing and it’s our individual choice to live and be happy or let our trials dictate our happiness.