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!”

Chondrosarcoma at the pelvis
Age at Diagnosis: 38
Date of Diagnosis: 2007
Location: Saratoga Springs, New York
Hospital: Dana Farber Cancer Institute/Brigham & Women’s
Surgeon: Dr. John Abraham

Diagnosis: I pulled a groin muscle coming off my horse in the spring of 2007. After two months of physical therapy, it was not getting better. If I did any exercise above and beyond PT, it was difficult and painful to walk. I visited my local orthopedic surgeon and he took and x-ray of my pelvis. You could see a mass on the left superior ramus down the tubercle almost to the sits bone. After an MRI and fill body bone scan, I was referred to an orthopedic oncologist in Schenectady. He initially thought it was fibrous dysplasia, and wanted to do a bone graft and bone biopsy, to make sure it was not cancerous. The biopsy came back chondrosarcoma.

I was a bit frightened, and did a lot of research on the internet. Most information I found strongly suggested I go to a dedicated sarcoma treatment center. Luckily, I have a friend who is an oncologist, who helped us get through the process of getting a second opinion somewhere… but where? Ultimately, I chose to get my second opinion and be treated at Dana Farber. Other than being a specialized sarcoma center and getting a doctor that drew a lot of pictures for me to help me better understand my cancer, the tipping point in our decision was that they have a specialist pathologist on site, one who eats, breathes, and sleeps sarcoma cells. From diagnosis to my second surgery, was 2 months. The time from my initial x-ray to my second surgery was stressful, but I was keeping busy with work, and learning as much as I could about chondrosarcoma. I did not have time to process the emotional aspects of cancer… yet.

Treatment: I had several MRI’s and a sample of my bone biopsy sent to the pathologist at Dana Farber. The samples showed grade 1 cells that had not broken through the bone walls. I also had a CT scan of my chest to make sure it had not spread to my lungs, and it did not. Chemo and radiation were not an option as the cancer had not spread. The first doctor in Schenectady (Dr. DiCaprio) had scraped the area to try and get most of the cancer out, when he was in there for the biopsy. He told me even if he was able to open me up further, the mass was too complex to get everything out, and the return rate of the cancer would be significantly higher than removing the affected portion of bone. Dr. Abraham also concurred with his findings after he consulted with him (they are colleagues). My husband I mad the decision to have the portion of bone removed. The doctor had to cut closer to the hip socket wall than he expected, but he was still able to leave me a few millimeters of bone to keep the socket wall intact. In essence, I had a hemipelvectomy, with muscle reconstruction, and mesh and alladerm placed in the “void” to keep my innards where they should be.

Recovery: The hemipelvectomy surgery was done in july 2007 and lasted about 8 hours, and recovery from it was a bit difficult for me. After reading some others experiences, it wasn’t as bad as theirs. Margins from the excised bone are super clear, and all cells tested from the bone came back as only grade 1 (yippee!!). PT started the second day in the hospital. Just getting up from the bed and walking around to the other side was such a chore. I knew that day, recovery would be a lot of work and a challenge. I was sent home after a week at the hospital. I had PT and nurses visit every other day until all my drains were out, and I could get up from a chair by myself. I was on crutches for a few weeks, then graduated to a cane for a few months. I got really depressed over the winter, as I felt isolated in the house, for fear of slipping on the ice. I did go see a therapist to work on my depression and talk about things. It has helped tremendously. I found I was flooded with a wall of emotions once I could not distract myself from the reality of cancer, through work and research. I also go for MRI’s and CT scans every three months at Dana Farber. I think that will be for two years. I do get anxious, and have the big “what if ” moments. But I try and work through them with my therapist. It has been a difficult road, a lot of crying, but I tried to surround myself with the best support group I could find (doctors, therapists, PT’s, family and friends). I still have a limp to my gate, but it continually gets better. The muscles that were affected may prohibit me from ever fully enjoying participating fully in a ballet class, or riding my horse the way I used to… but I can walk and ride my bike right now, and I am so grateful for those gifts.

Life now: I am starting to get back into the full swing of things with work. My stamina has increased over the months, and I am feeling more like myself. I am still on pain meds in the evening, so I can get some uninterrupted sleep. I still visit my horse, and hope to be able to lunge him by myself in a few months. Currently, I am strong enough to walk the dog by myself, and she is loving that! I am also relinquishing my husband from being the caregiver. He is so used to doing everything for so long, that I have to remind him that I can do more things around the house, and he can rest for a change.

Thoughts and Hints for Patients: My biggest helpful hint to patients is to talk to your doctor openly about pain management. Take your meds and stay on top of the pain. It is much easier for your body to heal. Don’t be afraid of becoming dependent on the drugs, there are so many ways to come off them now, or switch to something not as addictive. Also, give yourself time to heal after surgery. It’s ok to take those extra naps, I still am after a year. Oh, one more thing, right after a bone surgery, make sure you eat a good source of protein at every meal. Your body needs it to recover. One day at home, I tried to get away with only eating a pb&j, and I was soooo weak that afternoon. I didn’t realize how important it was until that day. I hope my info has been helpful to you, and I hope you find the best treatment for you, and recover to the fullest extent and enjoy life again.

Read more about Maria’s journey at her CaringBridge Page

Diagnosis: I was first diagnosed in November of 2004. It was Sunday morning and I went for a10k run as I do every three days of the week. After the 6k, I felt a sharp pain in my pelvis. They did an x-ray on my pelvis and then asked me to go and see specialist. One week later I was asked to have an MRI of my pelvis.

Three weeks later, I was told I have cancer. At first I could not believe what I heard. Then I knew I had to deal with the reality at hand.

Treatment: I was put on chemotherapy, five chemo sessions before surgery. The chemo just destroyed my body; it made me so weak, I thought I am going to die. Once I survived the chemo, I had to go through surgery. My surgery lasted for 18 hours.

Recovery: After the surgery I stayed for two months in the hospital and then for a year on a hospital bed in my house. After I went through some rehab, I was able to take my first steps in one year and half. That is when I realized my life has changed forever.

Life Now:My family and friends say I am strong person, but I went through to adjust to my new life was easy for me. There is nothing I enjoyed like jogging and I cannot do that now. I have to use a cane to walk. Then I read a book called Tuesdays with Mary. It is a book by Mitch Album. Life is what you make it to be. I am a much happier person today. I went back to work after three years; I drive with my left leg and I look at things as if they are normal. I do not give myself the title of a disabled person, because I am an able person. I will do my best to live my life to the best of my ability.

Diagnosis: I found the lump in June and my doc told me it was nothing to worry about. So as it got bigger and started to hurt more I went back and then she sent me off for tests. I found out September 13 that it was cancer, and that they just didn’t know what kind. After losing my slides I finally found out what kind, and started chemo in December (Merry Christmas to me). What a present I got – I lost all my hair two days before Christmas.

Treatment: Well my surgery was scary. I had to learn how to walk all over again. And I had an 18 month old to take care of. I wonder many times why is this happening to me. I just was feeling better after having the baby, depression after having her, and now this. My treatment started in December, and it lasted for 6 months. I had to do two days of chemo with three weeks off, and then 5 days of chemo with three weeks off for six months or so.

Recovery: I had to have someone come into my house to help me learn to walk, which I hated, but did it anyways. I still don’t have full feeling in my leg and the swelling the docs say with never go away.

Recurrence: It came back again when I was pregnant with our second child. But we didn’t know that until he was 4 months old and it was the size of a grapefruit sitting on my groin. How I ever pushed him out (all nine pounds of him) and no one found the tumor is beyond me . This time the surgery caused my leg to be much worse than before, and now I had to try to help be a wife and mom to two kids while trying to figure out this whole mess.

Life Now: I can’t work because of this damn thing and at 28 that makes me mad. But on the flip side, I always said when I was little I wanted to be a stay at home mom and god gave me a way and I even get a disability check for it. Haha. I am not the person I was and I am more understanding. Life couldn’t have taught me what cancer has in such a small amount of time. But life looks different through cancer glass and I wouldn’t have it any other way.

Thoughts and Hints for New Patients: Well first you have to get mad in order to fight this thing. If you don’t then the “oh me” will keep you down. You need the anger to fight and fight hard. I laughed the whole time I was going through it both times. And I found someone who never once asked me how I felt, just knew by my voice, and talked to me like life was and is still moving around me.

Chondrosarcoma at the Pelvis
Age at Diagnosis: 50
Year of Diagnosis: 2004
Location: Israel
Surgeon: Dr. Franklin Sim, Minnesota

Diagnosis: I saw a doctor November of 2003 and received a final diagnosis in March of 2004. The tests that were done were: Palpation, CT’s, bone scan, x-rays. The diagnosis was: Chondrosarcoma, grade I, inside the abductor muscle of the right thigh, growing from the the right pubic bone, originating from an enchondroma, which existed already for at least thirty years. I first noted problems in 1999, but only when I was sitting uncomfortably on long bus trips. In the fall of 2003, I relatively suddenly got more pains and stiffness in the right groin.

Treatment: Surgical removal in May 2004 (right hemipelvectomy) by Dr. Franklin Sim, Mayo Clinic, Rochester, Minnesota. The tumor was 12cm x 8cm x 7cm. I had a very good experience (10 days). Revalidation in nursery home for the elderly, almost as good as the Mayo clinic (16 days). Stayed an other 14 days with friends, then flew back to Israel. No other treatments.

Recovery: Physical therapy was in mentioned nursery home. I entered the nursery home on a stretcher and walked out with a cane. I stopped using my cane by the end of July, 2004. I walk quite normally now, and can even run a little bit. I do not climb as I used to. CT scans in September 2004, January 2005, and June 2005 were clean.

Life Now: In practical matters, life is just as it was before my surgery. I am a bit more tired in the evening. Spiritual matters and the like, hard to say in a few words. Most things don’t make me as nervous as they used to. But I wasn’t a nervous person to start out with.

Thoughts and Hints for New Patients: No tumor is the same as the others. Concerning chondrosarcoma, which was my problem, if you want to live, move heaven and earth to get the best treatment (surgery) possible. The first surgery very much determines what your recovery will be like.