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My Story | Sophia C., Maryland, USA

Ovarian and endometrial cancers, Stage 1 synchronous primaries, diagnosed 2002 at age 27

Two surgeries (removal of ovaries, fallopian tubes, lymph nodes, omentum, appendix, uterus, cervix, and scar tissue); Chemotherapy and radiation

On January 17, 2002 I was diagnosed with cancer. Fresh out of my first surgery, I was told I would soon be going through my second surgery. How did I get here? If I do nothing else in life, I want to make sure that every woman out there understands how important it is to know your body, and to know when things are going wrong. Don't let the doctors intimidate you. If you feel like something - anything - is wrong, GO TO THE DOCTOR!

I endured months of sickness, months of knowing that something wasn't quite right with me. Extended painful menstrual cycles, unexplained weight gain, tenderness in my side, loss of appetite, extreme fatigue -I had all the signs, but didn't even take myself seriously. Between August and December of 2001 I was sick more than I was healthy. Ear infections, bronchitis, stomach aches; I went back and forth to the doctor to no avail. What I learned later is that no one was really taking me seriously. In my medical records, there was little if any indication that I had made any complaints about the things I was noticing. And what about the unexpected weight gain? That was explained with a note in my chart stating, "Patient is obese." During this time, a diagnosis of polycystic ovarian syndrome was given to me, but nothing but a change in birth control pills was done. A numb pain that persisted in my side for a few weeks finally elevated to excruciating pain, and one evening in December, I ended up in the emergency room.

After spending the entire night in the hospital ER, and after blood tests, x-rays, and a vaginal sonogram, they found the mass. A tumor they told me, and sent me home on bed rest, pending surgery. The next day the doctors began calling. I was to endure two weeks of blood tests and doctor visits in preparation for surgery. Another discovery I made months later, was that I had a CA 125 blood test done before I even knew what it was for. My count was high, 3,677.5. Why I wasn't told about cancer after that test, I'll never understand.

My first surgery was January 17th, 2002. With my mom, sister, and a few friends in the waiting room, I headed into the operating room. When I awoke a few hours later, everyone around me looked grim. I don't remember much of that day but was told that I handled things well. No one told me anything, other than that the surgery went well, and I was wheeled to my room. I spent two days in the hospital without really knowing what was going on. Then finally my oncologist told me. They went in to remove what they simply thought was a large mass, and ended up removing both my ovaries, fallopian tubes, lymph nodes, omentum, and appendix. There were two masses, the first the size of a football, the second the size of a grapefruit. My diagnosis: ovarian cancer. I don't even remember that I even really reacted when he told me. Maybe it was the painkillers, maybe the shock, but it didn't sink in. All I knew was that a whole lot had been removed from me and life had changed dramatically.

I spent about a week in the hospital. Before being discharged, I was told that the cancer was not contained in my ovaries, and I would have to return for a second surgery in a few weeks to remove my uterus. The biopsy had shown that there was endometrial cancer there too. Without the support of family and friends, I don't think I would have made it through that first hospital stay. I had plenty to distract me from thinking too much about my diagnosis. I had a morphine pump that I could self-administer every six minutes (that wonderful pump!) I had massaging leg warmers on my legs to keep the blood circulating. I had an IV giving me fluids, and a naso-gastric tube (taped unfortunately to my forehead!) going down my nose and throat constantly removing any fluids from my stomach. I had a machine I had to constantly blow into to keep me from getting pneumonia. They made me get up and walk the day after surgery. Talk about cruel! Imagine walking around with a zillion staples in your stomach. They starved me for four days on nothing but ice chips and juice. We were waiting, waiting, waiting for me to excrete some natural gases. I know it sounds gross, but to doctors and nurses, it's the key to knowing a patient has organs that are still functioning after abdominal surgery. Still disgusted? Well think of it this way: I was trapped in that hospital until I produced for them.

I left the hospital. Every day I healed a little more and was tortured by the thought that I had to go back. My second surgery was in March 2002. In addition to what was removed before, now gone were my uterus, cervix, and a whole bunch of scar tissue that had formed. No need to repeat details, but know that this time the incision was even longer. Straight from under the chest bone ALL the way down. And again, the day after surgery I was up and walking.

I'd like to say that the story ended here, that I was completely cured and able to move on. God had other plans for me. Recovery from the second surgery was hectic, filled with constant doctor appointments. What I wasn't prepared for was the fact that this wasn't over even yet. The docs were having a hard time giving me a diagnosis. Did it start in the ovaries and spread to the uterus OR was it the other way around? Pathology reports ruled out "ovaries-to-uterus" and left us with two possibilities:   uterus-to-ovaries Stage IIIB or synchronous primaries Stage 1 each. They decided on synchronous primaries. Thanks to this dual diagnosis, I had to endure both of the next phases of treatment: chemotherapy to take care of the ovarian cancer and radiation for the endometrial cancer.

My chemotherapy consisted of six rounds of carboplatin and taxol. I had another surgery (this one minor) to implant a port-a-catheter in my chest to take chemo. I never really knew that it made you lose ALL your hair. Every last hair on my body was gone. I was constantly throwing up and in constant body pain. Anti-nausea drugs and painkillers? You name it, I tried it. Everything tasted like metal, or not good at all. The neuropathy began to set in. And the cruelty of this one is that thanks to the steroids, I gained even more weight. I think I was a poster child for side effects! August began my life with radiation: 28 treatments, every weekday for six weeks. Every day I went to the hospital, laid on a table as this big machine whirred and moved around me, delivering doses of radiation to my pelvis. Radiation's effects are even more dangerous because they sneak up on you. With the fatigue, burning, and tenderness (whew!) it's a wonder I'm still here to tell the story.

I'm done with treatment (HALLELUJAH) and now spend my days looking for a job and recovering. I have some digestive problems that are surfacing either from blocked scar tissue, or damage from radiation. So eating is difficult and makes me sick, nauseous, and constantly battling diarrhea. My hair is back. I'm in surgical menopause now. Can you imagine being in menopause at 27, experiencing hot flashes, night sweats, and mood swings? Senior women don't have to make excuses for their hot flashes, but you try to explain without giving too much detail why you're having hot flashes at 27. Believe me, its not easy.

So what got me through this time? I depended on support groups, family, friends, church, research, reading, prayer, and laughter and, most importantly, God. Some days are better than others. Lots of days I feel bad. I'm still tired, and unfortunately now dealing with some of the longer-term side effects of treatment; menopause, infertility, and the fear of recurrence to name a few. And the emotional side.....whew! I don't think many people understand that cancer has effects that will stay with me for life. Yes, the tumor is gone, but many other reminders remain. Some days I feel like I'm a winner, a survivor. These are the days that I feel empowered because I know I cheated death and the enemy. I feel energized to let everyone know my story, because I know that my experience is for God's glory. I have a testimony to share, a testimony of God's grace and love and His healing. I have a duty to share my story with other women. No one else should have to endure this. The future? I plan to remain cancer free. Last I checked my CA 125 was an 8!

(Editor's note: As of 11/03, Sophia reports her CA 125 is a seven! She says, "I'm doing ok, going through some testing (my chest x-ray came back 'abnormal' - whatever that means). Just had a CT scan on my chest last week, but haven't gotten the results back yet. Otherwise doing ok, having some trouble with stomach pain when I eat but that's also being investigated. But all that said, I'm still cancer free.")

November 2003

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