I received a call from the oncologist today with the results from pathology. Rachel’s tumor was an extremely rare and aggressive form of bone cancer called mesenchymal chondrosarcoma. The doctor said that he needs to consult with a team in Boston on the treatment plan, but it will most likely consist of chemo or radiation or both. The doctor also mentioned that he knew that Rachel was making college plans for next fall and that he “wasn’t sure how this is going to affect that.”

Rachel has her appointment at the oncologist’s office on December 6, where we will get more information and hopefully know what the treatment plan will be.

We are all devastated and in shock. Never in our wildest dreams (nightmares) did we think this would be the results of the pathology. We had been led to believe that the tumor was benign and we’d only been waiting to hear what type of benign tumor it was. To reinforce our assumption that it would turn out to be benign, one of Rachel’s uncles had previously had a benign tumor on his spine. It seemed way too much of a coincidence that the two blood relatives would have two completely different tumors in the same location.

Here’s a tip for you: When people tell you not to Google your diagnosis, you should listen. This cancer is so rare that there isn’t much information at all, studies are small and very few and fairly outdated. Most of what I can find puts 20-year survival rates at about 20%. This cancer seems to be known for coming back even years after treatment, without warning.