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
Pennsauken, NJ
