Five-year survival rate: 7 percent.
That's what I was told about my progressive cancer. Yet on February 21, 2010, I reached my fifth year of survival. Three years have passed since then. Now I have survived for eight years, and I give my most heartfelt thanks to be alive.
Of course, during those eight years, I went through repeated cycles of recurrence and metastasis, had 11 surgeries, and, in short, had the experience of being engaged in an all-out war against my illness.
My disease, sarcoma, is a rare one that is known worldwide as "the forgotten cancer."
Among all adult cancer patients, those with sarcoma comprise less than 1 percent. Within that 1 percent, it's said there are 50 or 80 types.
The primary lesion where the cancer first appeared can be in a variety of places such as the bones, muscles, or nerves, and depending on the flow of blood the cancer can repeatedly recur or metastasize anywhere in your body.
Also, you can have sarcoma break out in places deep inside your body and still not find tumor markers in your blood. This makes using diagnostic imaging difficult. And there are no effective anti-cancer treatments against most sarcomas.
These are the sorts of things I've come to know little by little over my eight-year battle. In the beginning I had absolutely no information and I didn't understand any of what was happening.
While I was at the University of Tsukuba's International Relations College, I won the title of Miss Japan and also debuted as a professional competitive (ballroom) dancer. After graduation, I studied for 10 years in England, the home of dance, and was internationally active. After I retired from active competition myself, I moved into the role of judge or chair at dance meets and provided guidance for junior dancers.
Around that time, I began to have a pain running through my stomach, and went to be examined at a university hospital. After having diagnostic imaging and a blood exam done, it was determined that I had a benign tumor. In February 2005, I underwent laparoscopic surgery on my stomach. Because the cells tested during that procedure were also diagnosed as benign, they went ahead and cut up the tumor -- which had grown to 10 centimeters -- and removed it through a small incision.
They took out a benign tumor, and now everything was fine! Relieved, I checked out of the hospital and returned to work. Then, one morning, I got a call at my home from the doctor who performed the procedure.
"The results of the pathological examination have come back, and the tumor may be malignant, so please come to the hospital right away."
What? It might be malignant? What does that mean?
I went to the hospital right away, and listened to the doctor's explanation. "As I said on the phone earlier, the results of the pathological examination have come back... the tumor was malignant. The formal name of the cancer is Retroperitoneum Leiomyosarcoma."
What do you mean, "cancer?" What is "Leiomyosarcoma?" In all honesty, I had absolutely no idea what was going on.
"We had thought the tumor was benign, and so we cut it up within your pelvis and collected as much as we could within the range that can be seen using the endoscope. But there is a chance that there may still be some pieces left behind, so as soon as possible we would like to do an abdominal operation to retrieve them. After that we will administer anti-cancer treatments."
You didn't know that it was malignant, and so you cut it up? There might still be some in there? Redo the procedure? The administration of anti-cancer treatments? All of these things were spinning round and round in my head. I didn't know what to do.
"We would like to discuss with you how it would be best to proceed, so please come back
in one week."
"All right. Thank you so much."
It was all I could do to just give that simple reply. I felt that there was a mountain of things I wanted to ask, but that I just didn't know where to start, and I left the hospital with heavy feet and my head in a fog.
Later, I realized that this had been my moment of cancer diagnosis. That was the point where my battle with the rare cancer "sarcoma" began.