In April, 2013, around my 40th birthday, I was diagnosed with chondrosarcoma in the pelvis, specifically in the acetabulum, where the femur connects to form the hip joint.
My symptoms began in November 2012 with moderate groin pain and intermittent deep pain in the hip joint. I tried weeks of rest, then stretching, and more rest. By February, I approached my primary care physician, who referred me to Orthopedics. A bone lesion was discovered in March through MRI. By April, needle biopsy confirmed the chondrosarcoma diagnosis.
Given the rarity and complexity of the condition, I corresponded with top surgeons around the world, all of whom concluded that an internal hemipelvectomy would be required to cut out the cancer. I was also presented with several different approaches to reconstruction, including one option which was to not reconstruct, but let the femur float in the pocket (a “flail hip”).
For a variety of reasons, I selected Drs. Sim and Lewallen at the Mayo Clinic. In July, 2013, I had half my left side pelvis and proximal femur removed. During the same 16 hour surgery, my hip was reconstructed using trabecular tantalum “foam” metal implants. This relatively new approach has the benefit of promoting bone and soft tissue ingrowth, improving stability and reducing likelihood of revision. I was closed by a plastic surgeon (Dr. Tran) using techniques to reduce chances of necrosis and improve effectiveness of closures.
A Summary of Reconstructive Proposals Tom Received
1. Flail hip: “the best reconstruction is no reconstruction”; the femur is left to “float” in the pelvic pocket, allowing for healing process to begin and avoiding risks of reconstruction, especially increased infection risk; there seems to have been a resurgence in this approach.
2. Allograft Prosthetic Composite: cadaveric bone replaces missing bone, femur reattached to cadaveric graft; most common reconstrution approach I was proposed; near term risk of graft not incorporating; long-term will likely require revision as dead bone fissures.
3. Custom prosthesis: metallic prosthesis custom made to replace the bone removed – interoperatively, these do not always fit as planned; over time, relatively short screws tend to loosen and require revision.
4. Arthrodesis/Pseudarthrosis: fusion of femur to remaining pelvic bone at fixed angle – a durable solution, allows for some flexion, but no bending.
5. Pedestal Cup: an inverted cup posted into the remaining pelvic bone; artificial femoral head is reattached at natural vertical center of rotation; not available in the U.S.
6. Titanium Cup with long screws (Paris, France)
7. Highly Porous Metal: Trabecular tantalum “foam” metal spacers and acetabular cup fixed to remaining bone; artificial femoral head reattached to cup; artificial femoral stem lengthened for leg length parity; shows great promise in near-term due primarily to strong biological fixation (ability for my own bone to grow in and around the implant); however, data beyond a decade is not available due to newness of the approach – this was the plan I selected.
Infection, Revision Surgery and Recovery
Three months after the initial procedure, an infection surfaced, requiring an irrigation and debridement (I&D/“wash out”) operation – this time ‘only’ 6 hours. Despite the physical and mental setback, by four months after the initial surgery, x-rays showed that my own bone had begun growing into and around the implants, and I was able to progress to partial weight bearing with one crutch, then to a cane.
As I write, nearly 6 months after initial surgery, I am able to walk with no cane and do partial body-weight squats. I still use my cane to walk in the community and take public transportation to work. I have virtually no leg length discrepancy. I have done no formal rehabilitation with the exception of lymphedema treatment and daily living (walking & stairs). The early days required extensive rest to convalesce.
I am grateful to my medical, nursing, and rehabiltation teams and family and friends for support. I remain hopeful for continued functional capability and durability of the highly porous metal implants.
I am not “out of the woods” yet. I have years of pelvic and chest scans ahead of me to ensure I stay cancer free. I am on lifelong suppressive antibiotics against any possible remaining hardware infection. I developed nephrotic syndrome and hives, which are being treated. And I have lymphedema in the lower extremities, which will likely require lifelong management.
Thoughts for New Patients
I would be happy to chat with anyone who is struggling with the diagnosis, identifying treatment options, or just needing to talk about the experience. Feel free to contact me at [email protected]
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Copyright © February 2014 Liddy Shriver Sarcoma Initiative.