I had just started working out again and was having some discomfort in my groin area when doing workouts. Was just massaging my leg when I discovered a lump or what I thought was a lump. Was going to my family doctor for my yearly physical when as an afterthought, asked him to check the area of my leg where it was. He said yes there is a lump, we’ll schedule an ultrasound. That was in February 2010.
Ultrasounds, x-rays, CT scans, MRI’s and biopsy later, was discovered that I had two rare conditions, the first which more than likely caused the tumour is called Melorheostosis which is a rare and progressive disorder characterized by the thickening of the cortical bone. Melorheostosis affects both bone and soft tissue growth and development. I have basically had this since birth as it is a gene mutation, but it never really reared its ugly head until now. 2-4 people out of a million get this disease in the world. The other diagnosis, of course, was the desmoid tumour in my upper inner thigh. That was all in June 2010.
In August 2010, my then husband decided to leave my son and I. He didn’t want to be married anymore. He is still in my son’s life, but was not supportive of any of this so it was up to me to just handle it. He did me a favour as I know I would not have had the emotional energy to get through all of this and deal with a bad relationship. We, my son and I are in a much better place.
I was put on tamoxifen and Celebrex in July 2010 and stayed on both until February 2011. My mobility was hindered by the fact that the tumour was wrapped around my femoral cluster (vein artery and nerve) and growing down to my femur, or out of my femur, they were not sure. I was also on gabapentin at this point for nerve pain and I made the decision to have surgery which entailed low dose chemo and radiation and six weeks after that surgery.
In June 2011 they removed the main tumour and another one they found up closer to my hip joint. The 6-hour surgery went well, but 3 weeks post op went into the hospital with a major leg infection and was there for two weeks. Came out of the hospital with another PICC line for 6 weeks of antibiotics and a VAC dressing on my leg for 10 weeks. Was a challenge, but my son and I got through it closer, stronger and a better family! He keeps me strong and focused on what truly is important.
Things had gone fairly well since recovery from all of that, with much more mobility and enjoying life with my son until in the last six months lymphedema in the leg has gotten worse. I now know that they believe there is a recurrence and am on Celebrex again to hopefully halt any growth.
A wait and see now, with another MRI in October and consult with my oncologist and his team. In the meantime, just moving on to have a good life with my 9-year old and hopefully if nothing else prove to him that the bad things do not have to be the focus of your life and you can have an amazing one around it all!