Kathy West's story:
As all of you know, I have Primary Peritoneal Cancer. This cancer has only recently been identified as its OWN type of cancer, but it is essentially Ovarian Cancer.
Both types of cancer are diagnosed in the same way, with the "tumor marker" CA-125 BLOOD TEST, and they are treated in the same way - surgery to remove the primary tumor and then chemotherapy with Taxol and Carboplatin.
Having gone through this ordeal, I want to save others from the same fate. That is why I am sending this message to you and hope you will print it and give it or send it via E-mail to everybody you know.
One thing I have learned is that each of us must take TOTAL responsibility for our own health care. I thought I had done that because I always had an annual physical and PAP smear, did a monthly Self-Breast Exam, went to the dentist at least twice a year, etc. I even insisted on a sigmoidoscopy and a bone density test last year. When I had a total hysterectomy in 1993, I thought that I did not have to worry about getting any of the female reproductive organ cancers.
LITTLE DID I KNOW. I don't have ovaries (and they were HEALTHY when they were removed), but I have what is essentially ovarian cancer. Strange, isn't it?
These are just SOME of the things our Doctors never tell us: ONE out of every 55 women will get OVARIAN or PRIMARY PERITONEAL CANCER.
The "CLASSIC" symptoms are an ABDOMEN that rather SUDDENLY ENLARGES and CONSTIPATION and/or DIARRHEA.
I had these classic symptoms and went to the doctor. Because these symptoms seemed to be "abdominal", I went to a gastroenterologist. He ran tests that were designed to determine whether there was a bacteria infection; these tests were negative, and I was diagnosed with "Irritable Bowel Syndrome". I guess I would have accepted this diagnosis had it not been for my enlarged abdomen. I swear to you, it looked like I was 4-5 months pregnant! I therefore insisted on more tests
They took an X-ray of my abdomen; it was negative. I was again assured that I had Irritable Bowel Syndrome and was encouraged to go on my scheduled month-long trip to Europe . I couldn't wear any of my slacks or shorts because I couldn't get them buttoned, and I KNEW something was radically wrong. I INSISTED on more tests, and they reluctantly) scheduled me for a CT-Scan (just to shut me up, I think). This is what I mean by "taking charge of our own health care."
The CT-Scan showed a lot of fluid in my abdomen (NOT normal). Needless to say, I had to cancel my trip and have FIVE POUNDS of fluid drawn off at the hospital (not a pleasant experience I assure you), but NOTHING compared to what was ahead of me.
Tests revealed cancer cells in the fluid. Finally, finally, finally, the doctor ran a CA-125 blood test, and I was properly diagnosed.
I HAD THE CLASSIC SYMPTOMS FOR OVARIAN CANCER, AND YET THIS SIMPLE CA-125 BLOOD TEST HAD NEVER BEEN RUN ON ME, not as part of my annual physical exam and not when I was symptomatic. This is an inexpensive and simple blood test!
PLEASE, PLEASE TELL ALL YOUR FEMALE FRIENDS AND RELATIVES TO INSIST ON A CA-125 BLOOD TEST EVERY YEAR AS PART OF THEIR ANNUAL PHYSICAL EXAMS.
Be forewarned that their doctors might try to talk them out of it, saying, "IT ISN'T NECESSARY." Believe me, had I known then what I know now, we would have caught my cancer much earlier (before it was a stage 3 cancer). Insist on the CA-125 BLOOD TEST; DO NOT take "NO" for an answer!
The normal range for a CA-125 BLOOD TEST is between zero and 35. MINE WAS 754. (That's right, 754!). If the number is slightly above 35, you can have another done in three or six months and keep a close eye on it, just as women do when they have fibroid tumors or when men have a slightly elevated PSA test (Prostatic Specific Antigens) that helps diagnose prostate cancer.
Having the CA-125 test done annually can alert you early, and that's the goal in diagnosing any type of cancer - catching it early.
Do you know 55 women? If so, at least one of them will have this VERY AGGRESSIVE cancer. Please, go to your doctor and insist on a CA-125 test and have one EVERY YEAR for the rest of your life.
And forward this message to every woman you know, and tell all of your female family members and friends. Though the median age for this cancer is 56, (and, guess what, I'm exactly 56), women as young as 22 have it. Age is no factor.
A NOTE FROM THE RN: Well, after reading this, I made some calls. I found that the CA-125 test is an ovarian screening test equivalent to a man's PSA test prostate screen (which my husband's doctor automatically gives him in his physical each year and insurance pays for it). I called the general practitioner's office about having the test done. The nurse had never heard of it. She told me that she doubted that insurance would pay for it. So I called Prudential Insurance Co, and got the same response. Never heard of it - it won't be covered.
I explained that it was the same as the PSA test they had paid for my husband for years. After conferring with whomever they confer with, she told me that the CA-125 would be covered.
It is $75 in a GP's office and $125 at the GYN's. This is a screening test that should be required just like a PAP smear (a PAP smear cannot detect problems with your ovaries). And you must insist that your insurance company pay for it.
