Today I am writing to raise awareness for something near and dear to my heart – that rare family of cancers known as sarcoma.
July is deemed Sarcoma Awareness Month. So, let’s raise some awareness for sarcomas.
For starters, sarcoma sucks!
I often consider myself the ‘sarcoma queen.’ I’ve had cancer five times and four out of those five cancers were sarcomas.
What exactly are sarcomas, you might wonder? Well, even if you aren’t wondering, I am going to tell you anyway. Sorry folks, its part and parcel to the whole awareness thing I am going for.
Sarcomas are rare cancers affecting bones and soft tissues. These types of tumors arise from connective tissue — including fat, muscle, blood vessels, deep skin tissues, nerves, bone and cartilage.
Sarcomas affect children, adolescents, and adults; although some types of sarcoma are more common in specific age groups. Despite that sarcomas account for roughly 1% of all cancers diagnosed, in the pediatric world and young adult population, sarcomas account for roughly 15% of cancer diagnoses.
Pretty much every Canadian (unless you have been living under a rock) as well as millions of other individuals around the globe have heard of the very courageous and inspiring Canadian hero, Terry Fox, who became famous for his “Marathon of Hope” run across Canada with one leg in order to raise money for cancer research. Yes, one leg people! However, what most people don’t know about Terry Fox is that the disease that claimed his leg and his life was osteosarcoma. He died from metastatic osteosarcoma.
Now you are probably thinking, hey wait a minute, don’t I (as in yours truly) have osteosarcoma. Yes, I do.
However, for me Oscar the Osteosarcoma originated in the soft tissue of my neck. Therefore, my diagnosis is metastatic extraskeletal osteosarcoma. Essentially, that’s just a fancy way of saying the cancer is in the soft tissue and not the bones. Whatever you want to name it, it sucks.
Due to its rarity, funding for sarcoma research is limited.
To further complicate matters, there are approximately 50 subtypes of sarcoma, making it even much more difficult to hone in on a cure that would be effective for each and every type of sarcoma out there.
Although we have made advancements with respect to sarcomas, we have a ways to go, my friends.
There have been several advancements made in Canada and around the world since the untimely death of Terry Fox, advancements such as limb sparing surgeries as opposed to amputations. However, unfortunately there still remains a lot of work to be done to help those suffering with these types of cancer live long fulfilling lives.
To make matters worse, in many cases sarcomas tend to be quite aggressive buggers and therefore have very high recurrence rates. Many times when the sarcomas recur they are often more aggressive and lethal. In many cases sarcomas metastasize to distant parts of the body, namely the lungs.
Typically primary (localized) sarcomas are treated with surgery, chemotherapy and radiation therapy (which was my case exactly for the rhabdomyosarcoma when I was three years old). Basically, the only way to cure sarcoma is with surgery (and clear margins). Cut the nasty thing out! Surgery seems to be the gold standard for these types of cancer.
However the situation becomes troubling when the sarcoma recurs or metastasizes. In these cases the sarcomas become desensitized to standard chemotherapy and radiation therapy, meaning the tumors generally don’t respond well to these treatments. And surgery in these cases is often futile or not even an option. This is why when the sarcoma metastasizes oncologists tend to predict a poor prognosis or chance of survival for their patients.
Ultimately nearly all metastatic sarcoma patients are given a dismal 20% five year survival rate.
Sadly sarcoma has claimed and continues to claim the lives of thousands of individuals, young and old alike.
We must raise awareness towards these rare and poorly researched cancers.
We need to stick it to sarcoma once and for all.
Come on, go out and tell your friends and get the word out. You know you want to.
Love, health, and keeping our connective tissues intact!