Susan's Story - My Journey into CANCER World
by Susan Colucci
Here is my story. My journey into the "Cancer World" started July 14, 2003 when certain body functions began to tell me something was terribly wrong.
I would put in a full 8 hours at work on my feet all day as a department manager of cosmetics, lifting boxes, stocking etc; so when I got home exhausted I thought that was normal. My stomach however was another matter as I kept telling Rich, my fiancé‘, it felt like it was exploding and even with that I thought it was my ulcer acting up so I went happily about my life.
Then I started to get very dizzy at times. I felt constipated, my stools were tar but I eat a lot of prunes so dummy me thought that’s why my bowels are in an uproar. I was excited about losing weight and knew walking all day helped but we noticed I was losing my appetite completely and all I wanted to do was sleep. My complexion started to look chalky white so it was good timing that I was due for my 3 month blood pressure checkup at my doctor’s. I told him my symptoms and he drew blood and called me the next day to say get to the emergency room, you are extremely anemic and I said I was calling him because I just threw up blood!
My primary doctor called ahead to the hospital here in South Jersey and I was taken into the emergency room where it seemed doctors started coming out of the woodwork. One came into the room and was drop dead gorgeous, which helped me feel better, but then I thought are my legs/armpits shaved. You silly girl. He came in to give you a rectal exam and he doesn’t even care what you look like! Then the Gastrointestinal Doctor came in and took information and 5 hours later I was officially admitted .
An Endoscopic was performed and a mass was found. Then I had CT Scans done and a needle biopsy. I wasn’t told anything after the needle biopsy since this was a weekend and the doctor would not be in until Monday. However, one of his partners came into my room and said “Don’t worry, we find these masses all the time and they are usually benign.” Then another doctor came in and said I should get my life in order. I immediately called Rich and we couldn’t get any answers .
Monday arrived and we waited for the doctor until 4PM and I was dressed and ready to get out of there. “A mass, very aggressive, very aggressive, huge, behind my left kidney, Liposarcoma.
"Very sorry, I’m referring you to an oncologist. There isn’t anything we can do for you here." These words were difficult for the doctor to tell me but all I could see and hear was my sweet mother sobbing and saying "Oh no, not Susan." Rich & I stared at each other, tears starting to swell in his eyes. I was frozen, denying in my head what this person was saying. What the hell was he talking about? How could I have this inside me and not even know it? He must be talking about someone else or I’m in someone’s dream and I’ll wake up.
Official Diagnosis: High Grade Sarcoma with Extensive Necrosis. Morphologically, high grade Pleomorphic Liposarcoma or malignant fibrous histiocytoma (MFH) are differential diagnoses and the former is favored. 15-cm mass on CT Scan.
The oncologist ordered chest, pelvic, abdomen CT Scans, a Muga (head exam) and thank god, the tumor hadn’t spread. He then made arrangements for me to see a doctor who he is affiliated with at the Hospital of the University of Pennsylvania. This saved my life!
My appointment for a consultation with Chief of Surgical Oncology, Dr. Douglas L. Fraker, was scheduled for August 6, 2003. My sister Michele, Richard & I met with a very nice intern who took a lot of information and then wanted to do a “little feeling” examination before Dr. Fraker came in. He proceeded to press on my abdomen on the left side and with frustration shouted “Why can’t I feel this tumor”, I said that’s enough, you’re hurting me! Then Dr. Fraker appeared and I was instantly put at ease. He drew us a diagram and discussed what organs might have to come out with the tumor based on the x-rays, but he said he’d know better when he got inside. The left kidney possibly, the pancreas, which he said you can live without, and maybe the spleen and some of the would have to be removed.
The day of surgery arrived, August 21 and the night before I snuck downstairs and wrote each family member a note thanking them for being with me all the way and to know how much I loved them in case I didn’t make it. I can’t explain how I felt except I wanted to stay as calm as I could be but the waiting for the procedure started to get on my nerves. They called for me around 12:00PM since there was a backup and I kissed Rich & Michele goodbye thinking I might never see them again. I remember discussing what kind of anesthetic procedure to use and when the epidural was inserted the next thing I remember was waking up with a hose down my throat pointing to it. I felt like I was choking. The nurses were so nice and said that’s ok we’ll remove it in a second. The operation took over 7 ½ hours and Dr. Fraker tried to save my left kidney but made the best decision-why have to have it removed later, it wasn’t working anyway.
The kidney was removed with the tumor as a whole, my spleen, part of my pancreas, part of the stomach, and left adrenal gland. I had a wonderful private room which overlooked the old football field, Franklin Field.
The “mass” measured 22x19.5x2.5 cm with white, firm cut surface with approx 40% of the centrally located necrotic areas. Grossly, the tumor appears to push the gastric mucosa, left kidney, left adrenal and omentum. However, it does not invade the above mentioned organs. The tumor appears to invade into the pancreas and spleen and approximate to the soft tissue margins.
Microscopic Diagnosis: Malignant Gastrointestinal Stromal Tumor, 22cm, involving gastric wall: retro peritoneum including periadrenal and perinephric spaces, pancreas and spleen; omentum; and one of four lymph nodes of the omentum (direct invasion) Extensive tumor necrosis present; the gastric and distal pancreatic margins free of tumor.
Post Operative Biopsy (Oct. 6th) The biopsy from the retro peritoneal mass shows an atypical peithelioid proliferation with extensive necrosis and moderate nuclear plemorphism. Immunohistochemical stains show the tumor to strongly and diffusely express CD34 and CKIT. The tumor is negative for cytokeratin (AE1/3 and CAM5.2) and smooth muscle marker (SMA,Desmin, HHF35 excluding a leiomyosarcoma as well as S100 excluding a liposarcoma).
My recovery was to take about 8 months, however the day after Labor Day I awoke at about 5:30am and the front of my pajamas were wet with this brown junk. I could see my scar directly under my breast bone where the incision started and brown puss was oozing out of it. I ended up back in a local hospital with an infection which now was to take about 3-4 months to heal.
How am I doing now? Pertty good! I started Gleevec per Dr. Fraker’s instructions and now have Dr. Margaret Von Mehren as my oncologist at Fox Chase Cancer Center. If you’re dealing with your health you should go were the best care is.
I didn’t have much time to actually “Think” about all that was happening because everything had to be done with speed and I think that helped me. I still can’t believe this actually happened, but I try to stay positive and keep my mind busy but your mind can’t help wondering back . Never did I think this would happen, which is a normal reaction when told you have “Cancer”. I remember Rich telling me all the phone calls he got from friends and family and that always make you feel good. But I still can cry on a dime if I allow myself to but I fight it. For some reason whenever friends/family would call I would just get so emotional someone else had to speak for me. The sadness I felt was the fact I might not be around to enjoy retirement with Rich etc. and help each other put our teeth in a glass together! Also, never to be with my sisters, the girls, you really do realize how precious LIFE is and how silly material THINGS are.
Right now we are monitoring a small 1mm cyst on my liver which Dr. Von Mehren has determined is from the original tumor. Preoperative xrays revealed what appeared to be two spots on my liver. These were originally so small that they were believed to be cysts and could not be definitively identified. Further studies revealed one cyst is a metastasis. Obviously I don’t want this to further invade my liver, etc. so we are consulting a liver surgeon. The good news is that its right on the tip of my liver so the operation wont be so traumatic.
I’m feeling basically better ever day and think the Gleevec is keeping the “SWITCH” from turning itself on. Only time will tell. I don’t know what my future will bring but with other “gisters” sharing their individual story maybe a common denominator can be found.
Susan M. Colucci