Name : Julie Anne Campeau
E-mail : firstname.lastname@example.org
Location: Calgary, Alberta, Canada
Area(s) affected: Right femur and tibia and possibly right foot
In my early 20s I had a period of extreme pain in my right hip and went
for bone scans and x-rays etc. It was determined that all was Ok, but I was
asked at the time if I had broken my right leg (femur) when I was younger. The
answer is no, but had a car accident where I had hit my knee quite badly and the
orthopedic surgeon felt that it just had been a green fracture and healed
itself. All got better and the pain in walking went away.
Over 20 years later, in February 2010 I found a small hard lump in my inner right thigh that had not been there before. I was sent for ultrasound, which led to x-rays, which led to more x-rays, as they found the abnormality in my femur and were concerned that the lump was associated to the bone malformation. I was then sent to an orthopedic oncologist and after CTs, MRIs, biopsies, the final diagnosis is melorheostosis which has caused a desmoid tumour (11 cm in diameter) that has been growing in my right inner thigh. The bone condition for me is secondary as until I had the tumor I didn't really have any associated pain. The tumor is growing, and currently I am taking Celebrex, and possibly they will be putting me on tamoxofen to try and reduce the size of the tumor as it is quite painful when walking and painful to touch. If that doesn't reduce the size or control the discomfort, the next course of action would be low grade radiation. The last resort is surgery, as trying to remove it now would mean I would lose a great amount of muscle with it as it has little fingers into the surrounding muscle tissue.
Comments: While knowing the condition is not life threatening and that the tumor is benign has relieved our family greatly, the treating of the resulting tumor as a cancerous one is a bit daunting. I have good days and bad days, and hopefully in a few months we will see some positive results. All I can say is I have wonderful team of doctors and support staff and we will have to take one day at a time.
Julie Anne Campeau
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