Charlene’s Story

Osteosarcoma at the Distal Femur
Age at Diagnosis: 25
Year of Diagnosis: 1996
Location: New York State
Surgeon: Dr. Dempsey Springfield (now practicing in Boston)

Diagnosis: I was diagnosed on May 22, 1996 at the age of 25 with osteogenic sarcoma of my right distal femur. My diagnosis came 2 days after a bone biopsy. My story goes like this:

In the summer of 1993, with visiting family in CA, a sudden sharp pain overcame me along the back of my right knee/thigh area. The pain came and went so I didn’t think much of it. Thought maybe just a strain or stepped wrong. Upon returning home the pain worsened and I figured better safe than sorry so I went to see an orthopedic specialist. After visiting 2-3 different orthopedic doctors a small bone tumor was revealed through x-ray and then confirmed by an MRI in April 1994. At the time it was felt to be a benign non-ossifying fibroma. With little knowledge about bone tumors my orthopedic, Dr Fletcher, felt it was best to watch it and wait. Seemed like nothing was helping, did PT, anti-inflammatories, and rested my leg as much as possible. Out of frustration I decided to just deal with the pain and swelling. Two years later the pain had worsened, becoming unbearable at times, causing me to return to my orthopedic. A repeat MRI showed slight tumor growth with irregular margins. So a biopsy was schedule for a month later, the longest month of my life.

On May 20, 1996 I had a bone biopsy done. Two days later on the 22nd I was diagnosed with high-grade osteogenic sarcoma of my right distal femur. The day of my diagnosis was a whirlwind of activity. I was off for chest x-rays, chest CT, bone scan, blood work, and met with my oncologist, Dr Weissman, in Latham NY. The following week I met with my orthopedic oncologist, Dr Springfield, at Mt Sinai Hospital in NYC.

Treatment: Two weeks after my diagnosis I had surgery to put in a port and started chemotherapy. Neo-adjuvant chemo was 2 cycles high dose Methotrexate with Leukovorin rescue. Which were 5 days in the hospital, scheduled 2 weeks apart. Then came 3 cycles of Adriamycin/Cisplatin combo (YUCKY!!!) administered at my oncologist’s office each 3 weeks apart, finishing that course in late August.

Limb salvage surgery was September 10, 1996. Consisted of radical resection of my right femur with osteoarticular allograft, patella replaced, and short head of my quadriceps muscle resected. I was in a long leg cast for 2 months and then a custom long leg KFO block brace for another 3 months. After surgery I spent 10+ months on crutches, started with no weight bearing then toe touch, to 75% in June 1997 and finally walked with a cane in July. Adjuvant chemo began in October 1996, ending with 3 cycles of Ifosfamide. Again 5 days in hospital given 4 weeks apart. On December 7th I turned 26. And on Dec 13th I finished my last chemotherapy. What a way to celebrate the holidays and bring in the New Year.

My hospital experiences were difficult. At 25, I was no longer a pediatric case so all my treatment was given on the adult ward. Which consisted of mainly dying elderly patients. Not a fun experience at all. My first 2 treatments were like living in a time warp. My second treatment ended with an early 1 am breakout. Couldn’t take it anymore. Felt like I was living in a fog in extremely slow motion. Just wanted to be at home in my own bed. The doc loved that wake up call. LOL! My last 3 chemos were at a hospital my oncologist visited. What a wonderful experience. The nurses treated me like one of their own. I had a private room, special meal requests, slept with my door closed, kicked out the maids, my doc wouldn’t wake me but rather do all his rounds then come back to me, he even made special trips to see me, I ruled the floor. I became the “queen of 3S.” At times it was lonely as everyone was working and carrying on their lives while I was fighting for my life. But I made it through. No worse for wear.

Recovery: Well, one could consider me a physical therapy “lifer” at this point. LOL! My therapy began in Dec 1996 and has been going strong ever since. Since my limb salvage surgery I’ve had 5 knee surgeries: 12/97 TKR (total knee replacement), 4/98 removed cement that leaked in TKR surgery OOPS!, 6/01 lateral patella release, 2/04 TKR revision – replaced plastic components to TKR, and my latest 12/04 – partial TKR, lateral release, and button on patella. [Click here to see my x-ray.] Can yah see why PT is still part of my life? Plus, in between I’ve managed to severely sprain my left ankle and a wild spill off my bike while off-road biking, all with a sprained ankle resulting in a rotated pelvis and tail bone that to this day is off about 1 inch to the right side. So I’ve managed to have a bit of fun that changes up my therapy needs. Takes the focus off this damn knee at times. My orthopedic oncologist says he’s ready to “take me out back and shoot me.” LOL! I love that guy. Not sure he realizes how much I appreciate all he’s done and continues to do for me. I’m his nightmare patient. He also says patients are discharged when there x-ray files weigh more than the patient, which is about true in my case. LOL! Guess someone needs to keep him on his toes. Right?

Life Now: The key is I am ALIVE. Life now is still filled with a lot of medical “stuff.” Most of my time is spent running to doctors appointments and dealing with long term effects of dealing with cancer. Although, I have two wonderful dogs Zephyr and Sheba, who I enjoy spending lots of time playing with. Needless to say I do not work. I did go back to school after treatment and have my BS in Biology graduating in Dec 2002. I also have an A.A.S. in Criminal Justice. Maybe one day I’ll get to use it. I’m thinking pharmaceutical rep. maybe? My passion is working with other cancer survivors, especially young adults. But I’m so not into going back to school to start over again. I volunteer at a local Gilda’a Club that recently opened. It’s like a second home to me, very welcoming and inviting. Which is adding purpose to my life.

Even with all the changes that have taken place in my life due to my cancer diagnosis I wouldn’t give it back. Sounds crazy but it’s true. The people and opportunities I have had over these past 9 yrs have been extraordinary. I’ve been places, done things, and learned more about myself as a person than I probably would have otherwise. My mom was my rock during treatment: living with me, carting me back in forth to treatment, caring for me day and night, and being my emotional support. My dad has been my rock after treatment: helping me financially by giving me a roof over my head, car to drive, and helping with medical expenses, while offering as much emotional support as a dad can. It’s because of all those people who took time out to help me during my cancer experience that I’ve made it this far. Some of my fun adventures have been – living with my gram in OH for 5 months and being with her during her death, several trips to Miami beach and cruise to the Bahamas, a trip to Ireland, several trips to CA to visit my older sis and her family (4 nephews and a niece). My most recent trip to see them was this past October (2004) where I witnessed the birth of my sister’s fifth child, my nephew Michael. More adventures include several yearly trips to OH to visit family and friends, summer trip to San Diego, getting to spend lots of time with my best friend Kristi and her husband Paul, and much more.

Thoughts and Hints for New Patients: My advice to you – Take one day at a time. Laughter is truly healing to the body, mind, and soul. If possible find someone to connect with who understands what you’re going through. Know that all your thoughts, emotions, fear, anxieties, etc., are normal. Listen to your body. You are the best indicator of how you feel and your best advocate. So ask the tough questions and don’t be afraid when necessary to demand answers. Don’t settle for anything less than what you deserve. Choose doctors who are not only top in their field, but are also warm compassionate souls. This will go a long way during and after treatment. Don’t stress over the little things. Set goals. No matter how big or small and cross each off when you have accomplished it. Keep a journal and/or scrapbook. Great for reminiscing and when need pick me up. Remember no one’s life is guaranteed. We’re just the special people whom got to learn this before it was too late. Live life to the fullest as everyday is a gift.

It is possible to live after an experience with cancer. Maya Angelou wrote “Surviving is important, but THRIVING IS ELEGANT.”

Update (February, 2009): Since I last reported not much has changed. I have undergone several more surgeries: 12/05 removal of calcification in popliteal area (behind knee). I fractured the allograft bone and there was loosening of the cement along the rod in my femur which led to surgery in 2/08 – removal of plate and screws in femur and allograft bone, revision to total knee replacement (TKR), and insertion of partial prosthetic femur and long rod extending up near hip joint. For some reason this surgery didn’t go very well. My body rejected the metal prosthesis which led to another surgery where they did another revision and cemented the rod in my leg in 4/08. I am currently waiting for my next surgery due to the loosening of cement around the rod in my femur. Not sure what my doc will be doing. I’m still going to physical therapy regularly and other maintenance dr. appointments. I’m praying that this next surgery will be it for a long while. I’m itching to get on with my life. I’m still not sure what I want to be when I grow up but I’m sure it will come. One of the best thing that has happened to me since my last report is that my pain level has drastically decreased with the Feb. 08 surgery and removal of the allograft bone. With the Lord’s help I am living each day as it comes. My spare time is spent attending church, bible studies and hanging out with a core group of special friends and of course my family and dogs.