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.

Diagnosis: I had intermittent pain in my left clavicle beginning in July of 2003. Every three or so months, it would hurt for approximately two weeks. Aleve would always control the pain and it was never unbearable. In March of 2006, my 18-month-old son threw his head back and banged it into my clavicle. It was the most horrendous pain I ever had. Two weeks later, it felt back to normal, but there was a knot on my clavicle. A friend of mine, who is a nurse, looked at it and said it looked as if it had been fractured to her. So my best friend, who is an x-ray technician, took some x-rays. She thought it appeared “funny” – there were black spots all the way down my clavicle. It started a testing frenzy. I was scanned through every machine imaginable, blood & DNA tests were done, lastly a biopsy. It confirmed I did not have cancer, just fibrous tissue.

In July, the regular pain flared up again, and I wanted a true diagnosis. With all of my tests in hand, I was finally sent to an orthopedic oncologist who told me I was the most extensively tested case of either Paget’s Disease or Fibrous Dysplasia he had ever seen. No cause for alarm… Just wait and see over the next year.

My first follow up appointment was November 2, 2006. The knot on my clavicle had really grown… but I just thought it was the bone “bowing” out due to the bone disease I had. My x-ray showed that wasn’t the case. There was a tumor there that was not on my x-rays from July. Dr. Porter kept giving me stats – only 1%of cancer is primary bone cancer. Only 1% of primary bone cancer originates in the clavicle. But, because of that tiny percentage, I would still want to check it out.

MRI was scheduled for November 3rd, which in turn led to my biopsy on November 14th. I was told on November 20th that I had cancer and on the 24th the Mayo clinic confirmed the diagnosis of Ewing’s Sarcoma.

That was a horrible Thanksgiving! I found out just before the holiday that I had cancer, but had to wait until after the holiday to get the confirmation on the diagnosis. I was so frightened – I knew that sarcomas were extremely aggressive and I had a child who had just turned 2. We had been ready to celebrate Christmas and then begin trying for another child. The previous 2 years had been a roller coaster anyway – we had had a baby, I had been diagnosed with multiple sclerosis and then had the cancer scare earlier in the year. If it were not for the grace of God, my family and close friends, I don’t know how I would have survived it.

Treatment: My treatment began very quickly. A port was placed on Nov 30th and chemo was set to begin December 3rd. During all of this, one of the path reports showed the bone had a mycobacterium avium infection – it is normally in people with tuberculosis of the bone infections. The health department tried to step in and stop my chemo so that they could treat the TB. I refused treatment until I could get my oncologist involved. He’s a very brusque man – and I was so glad it wasn’t me on the other end of the phone when he called the Department of Health. I actually received a phone apology from the nurse at the Department of Health who had jumped the gun.

My treatment proceeded very uneventfully after that. I had six outpatient treatments (VAC, Adriamycin was taken out and substituted w/ Dactinomycin after four treatments). Those were rotated with six week-long inpatient treatments consisting of Ifos and Etop. The outpatient treatments were harder physically, while the inpatient treatments were harder mentally. I chose to have my entire clavicle removed because of the pre-existing bone disease. My pathology report showed a 100% kill rate of the tumor was achieved and that my clavicle had fibrous dysplasia. [Finally! I knew what had been wrong with it for so long!]

Recovery: I recovered from surgery very quickly. I was vacuuming my house two days after surgery. I had muscle spasms in my neck due to having two muscles clipped, but that only lasted for two weeks or so. Muscle relaxers kept that in check until the “learned” they were no longer needed. Now, more than six months past surgery, they will still act up from time to time. Normally because I’ve done something I shouldn’t do. Strength has not been affected, the stamina of my shoulder has. I just can’t do heavy lifting as long as I once could.

Life Now: My family is even closer now than we were before. My son knows things about illnesses that most three-year-olds shouldn’t. But, he is so very compassionate of the sick. He has such a big heart; I don’t know exactly what impact this will have on him long term, but I’m glad for the compassion he shows at such a young age. I’m grateful to be able to do all the things I had been able to do before. I may not be able to do them the same way or for the same length of time, but cancer did not stop me from doing anything. In some ways (mentally), the disease actually gave me strength that I didn’t have before.

Thoughts and Hints for Patients: My doctor told me this one at the beginning and it turned out to be so true – You are your best advocate! You have the most at stake in this whole journey, and you are the one who has to live with the choices that are made regarding your treatment. Also, remember that your doctors and nurses are human. They make mistakes- mistakes that can have life-altering consequences. Do not just blindly go along and agree with whatever a medical professional tells you. I would have been treated for TB, with some serious ramifications had I listened to a nurse. I would have also received more than my lifetime dose of Adriamycin because my doctor forgot to write the change in my chart when I maxed out. I saw the nurse with the 2 syringes of the red devil and wouldn’t let her administer it. They finally had to go get Dr. Hamilton and his exact words: “Glad you caught it; I really f’d that up, didn’t I?”

Remember, most of all, you are still you. Live your dreams, go after your goals, be the person you want to be. Cancer can steal a lot from you, but don’t let it steal that!

Diagnosis: I first saw my family physician in August feeling soreness around my right knee. He determined I had most likely torn a muscle running and said to take some Advil for a couple of weeks. I was never in a lot of pain, but my knee began to swell and I thought I had better take it seriously. I asked my Dr. to send me off for an MRI. Within a few days I was told they believed I had low grade osteosarcoma. I had never heard of bone cancer before. I have been extremely active and fit my whole life and could not believe it was possible for this to be happening to me. I had to put on a brave face and prepare for what was ahead: many tests. I was off to meet an orthopedic oncologist and had blood work done, x-rays, a chest scan, and a bone scan of my whole body. I was told we would need to proceed with a biopsy in about a week, then plan the surgery from there. No chemo was planned, we caught it early enough. It was a difficult and confusing time. Hard to find answers to all the questions I had running through my head.

Treatment: The biopsy came back as expected- with the tumor being malignant. My surgery was discussed in detail and scheduled for October. I was in surgery for 10 hours, the tumor had wrapped itself around my knee and my femoral vein, and my surgeon spent hours trying to save the vein, but had to eventually “clip it”. I had 8 inches of my femur removed and a full knee replacement. My surgeon used a 3 piece metal prosthetic with a hinged knee. It runs from my upper thigh to my mid calf. Waking up after surgery was horrible. The reality of it all was overwhelming. I was in the hospital for 5 days. I had a family member in my room at all times. The nurses were not attentive and not very sympathetic to the miserable state that I was in. The pain was awful, and I rarely slept. I believe the Dr’s made an effort to try to keep me comfortable.

Recovery: Once I got home things just got worse. I was told I would be on crutches for 3 months, but I was only able to use a walker. My leg felt like it was not part of my body. If I got up to stand, it would “pop” over to one side. If I was lying down it would “jump” up from the couch or bed. My foot was always numb and felt like an ice block. Depression set in as the holidays came around and I was barely able to move about my own home. I was constantly calling my surgeon or being taking to the hospital. There were days at a time when I could not even get out of bed because I had excruciating stabbing pain in my upper thigh (unexplainable really). Sometimes it would take a dozen attempts at sitting until the pain let up enough that I could sit. If I didn’t, I just had to stand up with my walker. Once down, I stayed that way for days until it let up. No one could tell me what was happening. Finally at the 9 month mark, my surgeon did another bone scan and was able to tell me that he believed the metal rod that was inserted into my remaining thigh bone was moving. It was too small. He had hoped I would have had more bone growth around it, but it didn’t happen. I needed to have the upper rod replaced with a larger one. I had this done in August of 2007. In addition to replacing the rod my surgeon cleaned up some scar tissue around my knee. I was in the hospital for 3 days, and this time my experience with the nursing staff was much better. The surgery was also successful.

Life now: I had in-home, out-patient and aquatic therapy during my recovery. I am still actually in recovery. I exercise daily now on my own, but nothing near what I used too. Mainly just lots of stretching, some treadmill, and finally back on my recumbent bike. I went off all my meds a couple of months ago because I wasn’t getting any relief from them for my knee pain. My surgeon gave me a steroid shot a couple days ago and we will see if I can get some relief for a while. There are many things I can’t do with my new leg, but I am still pushing myself everyday to see what new things I can do. My bend will never be more than 90 (feels like 80 to me), stairs are a big challenge, I have a slight limp, and my calf swells from lack of blood flow from the loss of my femoral vein, but I try to keep a positive outlook and see something good in each day.

Thoughts and Hints for Patients: This website has been wonderful. Many others were very scary and had way too much information. Talk to your Dr. and ask questions and press for answers. Know you are not alone.

Update in February 2009: In May of 2008 after months of continued pain and decreasing movement of my knee, my Omaha surgeon recommended arthroscopic surgery to “take a peek” at my knee cap, remove any scar tissue they could get to, and then go from there. I proceeded with that surgery in May of 2008. It was a relatively simple procedure; I was in the hospital for a few days and had a pain block in place. I returned home and for the next two months used an in home CPM unit. It wasn’t long before I realized that surgery was not the answer. The pain eventually worked its way back even more aggressively and I suffered each and every day. It was difficult to walk and the pain consumed my days and affected everyday living. The only way I know to describe what was happening, is to say that when I bent my knee, there was a visible shifting (of my kneecap?) and a “pop” that occurred as something seemed to settle back in place (you could feel it happening if you put your hand on the front of my knee as I extended it). It often felt as if something was wedged there or that possibly my knee cap was not tracking properly. Nothing relieved the pain. I was not taking any prescription pain medications. Advil, Tylenol, ice, heat, little activity, vigorous activity, regardless of what I did, nothing eased the pain.

As I neared the two year mark from my diagnosis I was feeling depleted. My surgeon in Omaha had no answers. I made copies of my films and medical notes, included a letter asking for help, and mailed it to the Mayo Clinic in Rochester, MN. And I waited, four months in all, before I received paperwork saying they would see me. That was in October 2008. Meeting Dr. Franklin Sim and having him look at my films, explain things like no one ever had, and telling me he could help me, made me see the light once again! I scheduled surgery for December of 2008. The plan was to go in to the knee, and resurface the kneecap and put in place a plastic cap device that would make my kneecap glide over my metal knee. I couldn’t wait. I would have done it that day if they would have taken me!

On December 3rd, 2008 I had my 4th surgery. It did not go quite as planned, however, much better than planned! While in surgery, Dr. Sim determined that I needed a smaller knee prosthesis as well as the kneecap resurface/plastic cap device, and he was prepared with the parts necessary. So, the surgical team basically reopened the entire incision (oh, it’s a real pretty scar now!) and took apart the prosthesis and replaced the knee, and one of the rods, and repaired my kneecap. Within a day I knew it was totally different. Painful, yes- but I could kick my knee out, and bend it with no pain what so ever. My bend is now comfortably at a 90 degree, I walk much smoother, and there is no popping or clicking of any sort. I was on crutches for about a month, but now I am driving, walking, shopping, and doing as much as my leg will allow in a day. I only hope it continues to get better with each day.

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 innocently went to wipe something off my shirt one day when I felt a large lump on my chest. The doctors first suspected it to be in my breast. I went through a battery of imaging tests for about 10 months. My attempted lumpectomy turned exploratory and the tumor was found to be in between the 2nd and 3rd rib behind my right breast. It was diagnosed as a grade 2 chondrosarcoma of the chest wall.

Treatment: In August of 2007 I recieved treatment at the University of California Irvine. I had a wide en-bloc resection of the anterior chest wall with a partial mastectomy. The 2nd, 3rd, and part of the 4th rib were removed along with part of my sternum. Mesh, mortor, muscle flap and skin graft were used to correct the defect. I spent 3 days in ICU and 6 days total hospitalization. The doctors at this hospital were really great and did their very best to minimize the trauma.

Recovery: I have lost some strength on the right side, my balance is off, and I tend to lose grip of things occasionally that I grasp with my right hand. I have a-lot of back pain and find myself short of breath but i am alive, that is what matters. I will soon have the rest of the reconstruction done for my breast and that I think will help.

Life now: Life does not stand still. I have four beautiful children that I am able to share my life with. I can remember the fear of not being able to be here for them and I thank God everyday that I am still able to be their mommy.

Thoughts and Hints for Patients: Do your own research and keep track of all your records and films. Do not depend on the medical staff or your physician to do this because sometimes they don’t. Be of positive mind and spirit, this is not the worst thing that could happen or the end of the world.