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