Osteosarcoma at the Proximal Femur
Age at Diagnosis: 41
Year of Diagnosis: 2004
Location: Texas, USA
Surgeon: Dr. Valerae Lewis at M.D. Anderson in Houston
Diagnosis: I fell on my right side in 2001, and my upper leg area was always sore thereafter. I was sent for x-rays, which noted a lesion of interest, and then to a sports doctor, who called the lesion a “red herring” and treated me for bursitis with corticosteroid injections. The treatment didn’t work, and I stopped it when I started trying to get pregnant. When I had my baby (first and now probably only) in 2003, I had gained 40 pounds and the pain was worse. After I lost weight I expected it to get better but it didn’t. Faced with an infant who was crawling and would be walking/running soon, I knew I had to find out what was going on and get it fixed.
I tried to go back to the old doc, but he no longer took worker’s comp cases (the initial fall was at a previous employer’s office). Thank goodness. I was now working for M.D. Anderson Cancer Center, so I found an orthopedist in the Houston Medical Center so I could walk there at lunch. He took a look at my new x-ray, sent me for a bone scan, and immediately said I should be referred to MDACC. “Do you know where that is?” he asked.” Sure, I walked from there.” He said I was a walking fracture and had me get crutches. This was in late July, 2004 and I was 41. Overall, I had 2 bone scans, MRI, CT scan, blood work and all sorts of x-rays before diagnosis.
Treatment: I had a diagnosis of chondrosarcoma from Dr. Lewis at MDACC a few weeks later, and surgery a week after that (8/16/04). Total time between the first pain from the fall and surgery was 3 years even.
Dr. Lewis removed the top half of my right femur, replaced it with a hemiarthoplasty with allograft around it. I was in the hospital for 26 days. Dr. Lewis said I would be off crutches in three months, so I went home and was happily recuperating when she called me back to say the pathology report had come back osteosarcoma. I’d fooled all the Sarcoma docs on the panel, partially because the OS was slow growing and didn’t have the ‘look’ of OS based on x-rays, MRI and CT scans.
My experience in the hospital wasn’t the best. I didn’t get proper support stockings, and my ‘leg squeezer’ didn’t work, and I ended up with a pulmonary embolisms in the right lung. The epidural numbed my left leg, but didn’t do anything for the right leg. The steroids I received in the hospital with the first cisplatin round gave me akathesia, which I didn’t find out was a common side effect until about a month later. Psychiatrists had me refuse the steroids you get for nausea control before chemo. Instead I took Emend, which worked OK.
Dr. Patel was my oncologist, and suggested (he’s wonderful in that he doesn’t TELL you anything) 4 rounds cisplatinum/adria, and 4 rounds Ifosfamide/adria. I was inpatient for 11 days after the first round, with near renal failure (and all the other lovely side effects like tinnitus, hearing loss, blurred vision, etc.) so they couldn’t use cisplatin again. I ended up having 5 rounds ifos/adria and the last round of just ifos (April 2005) after there was some reduced heart function after a scan due to the adria.
Recovery: The leg has been slow to heal because of chemo. Because of the location of the surgery and the allograft, I’m only up to 50% weight bearing after all this time. My basic exercises involve working all those muscles just below the hip that had to be cut away and reattached to the allograft bone. I still can’t raise my right leg as high as my left. I can barely lift it at all to the side from a prone position. But I’ve not worked as hard at it as I should have.
I started in a waist-to-toe Bledsoe brace, and got that off in January, to my extreme delight. I will hopefully go to only one crutch soon. I had my CVC removed about 2 weeks ago, and that’s the best thing ever! I went out and bought some low cut blouses *grin*
Life Now: It’s been difficult knowing the odds are so small of have OS diagnosed at 41, having it in the hip area, having it grow out of a pre-existing lesion, and actually working at a cancer center. With those odds, why couldn’t I have won the lottery instead
I’m hoping that the menopause the chemo put me in will reverse itself now that I’m finished, but I’ve been told it’s not likely at my age.I’m NED (no evidence of disease), and will be going back to work shortly! I am non-patient facing at my job at MDACC (email server administration) so it has been a very interesting experience being on the other side.
My parents were lifesavers, they’ve been primarily caring for our toddler. The husband has had a much more difficult time dealing with all this than I have. I’m concerned taking over care for the child while I’m still on two crutches, but we’ll manage, I guess.
Life did seem to be in Limbo during the chemo. I initially thought, ‘hey, I’ll have 6 months off work – just think of all the things I’ll get done!’ but of course many days I didn’t even have the energy to take a bath, so now it all feels like wasted time.
Thoughts and Hints for New Patients: Make sure you end up at a well-known Sarcoma center. This is vital. During many hours spent in many waiting rooms at MDACC, I heard story after story of people getting substandard treatments and surgery before coming there. So many docs have never even seen bone cancer, but think they can jump in and make a diagnosis.
Make sure you have docs tell you all options and *write your questions and their answers down*. Once chemo has started, you may find you don’t remember what you ate for lunch, much less what vital questions you wanted to ask during a doctor’s visit.
Always check your chemo treatments before they are given. I had a few unusual items on my protocol, and I had to tell the nurses each time because they never read down the forms long enough to get to the “other comments” section.