This is Carolyn's orginal email, written while she was undergoing chemotherapy in 1998.

Carolyn's 2000 revision

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THIS IS VERY IMPORTANT INFORMATION. READ IT AND SHARE IT WITH EVERYBODY!!!

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 providing this information; I hope you will photocopy it (or scan it into your computer to send it via e-mail) and share it with 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, including a mammogram and a PAP smear; I did monthly Self Breast Exams and went to the dentist at least twice/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 50 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 bacterial 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, I 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 had a nuclear liver scan; this, too, 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 procedure, 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, P-L-E-A-S-E 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 A CA-125 BLOOD TEST EVERY YEAR; DON’T TAKE "NO" FOR AN ANSWER. IF YOUR DOCTOR WON’T RUN IT, FIND A DIFFERENT DOCTOR.

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 ELEVATED, YOU CAN HAVE OTHER TESTS DONE OR ANOTHER CA-125 TEST IN THREE OR SIX MONTHS AND KEEP A CLOSE EYE ON IT JUST LIKE WOMEN DO WHEN THEY HAVE FIBROID TUMORS OR WHEN MEN HAVE A SLIGHTLY ELEVATED PSA TEST (PROSTATE 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 – CATCH IT EARLY.

I hope I haven’t bored you with all of this. But I hope I HAVE scared you enough to motivate you to action. Do YOU know 50 women? If so, at least one of them will have this VERY AGGRESSIVE cancer – and maybe, just maybe, it will be YOU. I hope not. Please, go to your Doctor THIS WEEK and insist on a CA-125 test and have one EVERY YEAR for the rest of your life. And tell every female family member and friend. As the Nike ads say, "JUST DO IT!" Please don’t think youth will protect you, either. 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 NOT a factor.

Thank you for your time. My best wishes for your continued good health.

Carolyn Benivegna Cbenivegna@AOL.com 5835 Cloudstone Ct., Naples FL 34119 Fax AND Phone: (941) 353-7959

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