In September 2008, three months after having had a tummy tuck surgery, I was having trouble urinating, which I thought was somehow attributed to the tummy tuck as I did have a bulge in my pelvic area, which again I thought was a result of my tummy tuck. I thought I had a urinary tract infection, so late on a Friday afternoon, I went to see my Primary Care Physician for what I thought would be a simple prescription for an antibiotic.
Well 11 hours later, into the early morning hours of Saturday, I left the ER with a catheter and some very disturbing news. After seeing my PCP, she referred me to the ER because I didn’t have a urinary tract infection, but she could see my bladder was full so something was preventing me from urinating. In the ER I learned that I actually had a large mass that was pushing on my bladder, which was the reason I couldn’t urinate. They sent me home with a catheter, and told me to make an appointment to see my gynecologist first thing Monday morning.
Needless to say, it was a worrisome, long weekend for me. But I kept telling myself that bigger is better, that bigger masses tend to be fibroid tumors (which I’ve had in the past), not malignant tumors. My gynecologist referred me to the head of gynecological oncology at Tufts Medical Center in Boston, because she was concerned about the size of the mass, and her ability to remove it. Best thing she could have done, because I believe my surgeon, Dr. Wakely, probably saved my life.
I met with my gynecologist Monday morning, met with Dr. Wakely Tuesday afternoon, and the surgery was scheduled for Monday, September 23rd. Dr. Wakely prepared me for possible ovarian cancer, which scared the hell out of me, since I knew the mortality rate for ovarian cancer is high. I figured that was my worst case scenario. I gave my permission that if they found ovarian cancer, they would put a port in so I could begin receiving chemo treatments right away. So, when I woke up from my surgery, I remember feeling around, looking for a port, and when I didn’t find one, I thought “Yes, no cancer!” That illusion was quickly shattered by Dr. Wakely who gave me the devastating news that indeed it was cancer, but a cancer she’s never seen before, a “bad” cancer. She said they biopsied the tumor and sent it out for a pathology review.
For the next 3 weeks, I waited and worried for that phone call; having a family member with me at all times so I wouldn’t get the call alone. The call came in the day before I was scheduled to see Dr. Wakely for my followup appointment, and the news was pretty bad. Uterine Leiomyosarcoma, a very aggressive, rare cancer of the soft tissue (the only word I understood in that diagnosis was “aggressive.”) I thought I was going to die. The news didn’t get much better the next day when I went to her office and she told me about the 70% chance of reoccurrence rate. And then she referred me to Dana Farber, which is when reality really set in that I have cancer, because Dana Farber only treats cancer. She explained to me that they have a department which specializes in treating Sarcomas.
My next doctor/oncologist was Dr. James Butrynski at Dana Farber, who I don’t think I could have gotten through the next year without. We discussed my treatment options, which was basically chemo or we could watch and wait. He did explain that there is little supportive data to show that my cancer responds to Chemo, but the hope was that my surgeon had gotten it all during the surgery (which she believed she did), and this would be precautionary, just in case a few cancer cells had gotten away. My surgeon had reported clear margins, so we were hopeful.
Well it is six years later, and after 31 radiation visits, four rounds of chemo, CT Scans every 3 months for the first three years, and then every six months since, I remain cancer-free, and my doctor considers me cured.
Being diagnosed with cancer never leaves you though, because you always wonder if there is a cell lurking around in there, waiting to spread, waiting to mutate. Other than my inability to urinate, and the lump in my groin, I had no symptoms, and that is what scares me the most. Each year it gets easier to believe it isn’t coming back, but I don’t think I’ll ever feel cured. For now, it is enough for me that my doctor feels I am.
If you or a loved one has been impacted by sarcoma cancer, we encourage you to share your story. Sharing your story can be such an inspiration to others who are dealing with sarcoma in their own life and remind us all of the urgency to find better treatments in order to make an impact on the devastation that sarcoma cancer brings. Let your experiences help others become involved with raising awareness!