Name : Julie Anne Campeau
E-mail : jacampeau@shaw.ca
Adult
Location: Calgary, Alberta, Canada
Area(s) affected: Right femur and tibia and possibly right foot
Personal History:
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.
Sincerely,
Julie Anne Campeau