Public Speaking

Gulp.  Not exactly my forte, but I have been asked to present my story of diagnosis, and how it came about, signals that were missed, etc.  The University of Arizona Cancer Center is sponsoring a symposium entitled "Survivors Teaching Students."  We (3 to 4 of us) will read our diagnosis, in an effort to raise awareness among 3rd year medical students.  This is my speech.  Wish me well!

Good morning.  My name is Cathleen Pearl, and I have been given 7 minutes to tell my story in which I will hopefully be able to help you help your patients.  That's not a very long time at all, but in comparison, two years ago at the age of 63 years, in less than one minute, I went from planning my retirement to wondering if I would live long enough to see my retirement.

I began my journey with a visit to my Primary Care Physician, complaining of severe stomach cramping, which I was experiencing every morning.  At the same time, I was intermittently constipated and experiencing acid reflux.  But by the time I saw him, those symptoms had subsided.  Several weeks later, they came back. I revisited my pcp. It’s important to note that at this time, I did not exhibit bloating, nor pain with intercourse, which are generally the more common symptoms of ovarian cancer.  He referred me to a gastroenterologist , who ordered a colonoscopy and an endoscopy.  Those came back clear.  He prescribed meds for the acid reflux.  I was supposed to see him in two weeks for follow up however, I didn’t know that and it didn’t get scheduled.  A month later, as it wasn’t resolving, and my stomach was starting to bloat, I wasn’t able to eat much, and was experiencing extreme night sweats, I saw him again.  Today I realize I had many symptoms of ovarian cancer!  However, his plan of care was to prescribe a different prescription.  I  gave it two weeks, and found no relief.  He prescribed yet another med.  I again showed him my bloated stomach, which by this point looked like I was eight months pregnant.  He did not seem concerned with that and did not palpate the area.  All of the above occurred between December 2010 and the end of April of 2011. 

All of this quickly changed course when I went to the ER one night with terrible back flank pain.  I knew I was having trouble passing a kidney stone.   In came a doctor, whom I have never met, and never consulted with.   As I told him about the pain I was experiencing, I was being hooked up to an IV pain med, but he zeroed in on my stomach and said,” we need to see what’s going on with this”.  He drained 4 quarts of fluid from my stomach and sent it to pathology.  I was also scheduled for, and had, other tests. 

At 10:30 that evening, as I sat alone in my room, another doctor came in, and in about 30 seconds told me I had ovarian cancer, probably stage 4.  I asked him, well, what we do about it?  He said, "I’ll be referring you to a gynecologic-oncologist, but the prognosis isn’t good”  then turned and promptly left the room.  And my world turned upside down! I should have had another person with me when I received the devastating news that night, or at least have had more time to ask questions.  I haven't been emotionally or physically the same, since that moment.

It wasn’t until several weeks later, after being told I wasn’t a candidate for immediate surgery, I learned that my cancer was more likely Primary Peritoneal Cancer.  This is a cancer that presents with tiny sprinklings like sesame seeds thorough the peritoneum and on to the ovaries and beyond.  It presents itself with the following symptoms:

·         Abdominal discomfort or pain from gas, indigestion, pressure, swelling, bloating, or cramps

·         Feeling of fullness, even after a light meal

·         Nausea or diarrhea

·         Constipation

·         Frequent urination

·         Loss of appetite

·         Unexplained weight gain or loss

·         Abnormal vaginal bleeding

·         Rectal bleeding

·         Shortness of breath

I had all of these symptoms except two.  In spite of that, my illness was misdiagnosed by several doctors. Upon further examination, in my case cancer cells were also found in the pleural fluid. My treatment plan consisted of neo-adjuvant chemotherapy, to include carboplatin and taxol, with surgery to follow when chemo was concluded.  Upon completion of chemo I had a PET/CT scan, and no evidence of cancer was found, with the exception of a small amount of pleural fluid remaining.  Since the surgery is so invasive and scraping of the pleura very risky, and is often followed with complications months or years beyond, my gynecologic oncologist recommended we give my body a rest and rescan in three months.  At that time, I still showed no evidence of cancer, but by six months it was back, and I began more chemo.

Breast cancer has received a great deal of publicity, and yes, early detection is key with mammograms for an early diagnosis, and yes, many more women have breast cancer than ovarian cancer.    However, since there are no early tests for ovarian cancer, it is statistically more deadly.  Only thirty percent of women diagnosed with ovarian cancer are alive five years later, as opposed to a 90% survival rate when diagnosed at Stages I & II. Women are not aware of the symptoms, and often doctors consider the symptoms to be similar as those with less deadly diseases. 

My story is not unique.  I’ve heard it retold time after time.  There is no screening test for ovarian cancer, and there is very little public awareness of it.  I was one of those women who knew nothing about ovarian cancer, so I had no idea that my problems were related to my ovaries.  The only thing I knew was that Gilda Radner had it, and Gilda Radner died from it!  My symptoms never felt female related at all.  I had just had a female exam nine months before, all was good or so I thought. Of course today I know a PAP smear doesn't detect ovarian cancer.

Because this disease is so insidious, the only way to get ahead of it is to know that it exists, and in what ways it can present itself.  Be aware, that when a woman complains of constipation, acid reflux and stomach cramps, it’s not necessarily indicative of a common ailment.  Until and if a screening test is developed, how many more women will find themselves in my shoes?  We desperately need public and medical personnel awareness;  this is a disease that hides and masquerades itself until, in most cases, it is too late.

When I first saw my doctors, I wish they would have considered that my symptoms could be due to a subset of ovarian cancer known as PPC.  My distended abdomen should have been a red flag.  I wonder why one of my doctors didn't suspect something other than IBS and/or a hiatal hernia?  I urge you to become aware of the symptoms of ovarian cancer.  Please err on the side of caution when your patient comes in with symptoms like mine.  My request of you today is that you remember me and my story and connect the dots when that woman presents to you with vague symptoms that could well be ovarian cancer.  You could well save a life.

Thank you.