Monday, November 10, 2008


Even in Women who have had a complete hysterectomy!(Even In The Absence Of Ovaries)
An Eye-Opener On Ovarian Cancer


Years ago, Gilda Radner died of ovarian cancer. Her symptoms were inconclusive, and she was treated for everything under the sun until it was too late. This blood test finally identified her illness but alas, too late. She wrote a book to heighten awareness. Gene Wilder is her widower.

Kathy's Story: this is the story of Kathy West

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. 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 ever 55 women will get OVARIAN or PRIMARY PERITONEAL CANCER. The 'CLASSIC' symptoms are an ABDOMEN that rather SUDDENLY ENLARGES andCONSTIPATION 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 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 bloodtest! 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 fore warned 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.


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.

Gene Wilder and Pierce Brosnan (his wife had it, too) are lobbying for women's health issues, saying that this test should be required in our physicals, just like the PAP and the mammogram.


ps. Since my Mom died of Ovarian cancer and I have a fibroid cyst, my gyn automatically does an internal sonar scan and the CA 125 and my insurance always pays for it.
I tell everyone I know to get this test done, they can use the same blood they draw for all the other yearly tests. BUT YOU HAVE TO ASK FOR IT UNLESS THEY HAVE SOME REASON TO DO IT.

Pass it on.



Cathy said...
This comment has been removed by the author.
Cathy said...

I deleted my previous post due to a typo.
I just found your blog via my traffic and was pleased to read your post on ovarian cancer. I lost my mom to oc May 1993. She was 48 and was diagnosed at stage 5 Feb 1992. I have the internal ultrasound once or twice a year, but have never had the CA125. I have known of the test for a good while. After lots of research, I found out that even though a woman had their ovaries removed, it would not eliminate the chance of the cancer. It would show in the abdominal region. Just recently, I had the removing of the ovaries conversation with my husband. I'm 43 and still unsure what I'm going to do. Something that will have to prayed about and then make a decision. Thanks for visiting my blog and please feel free to post when you get a chance. So glad I visited your blog.


Melinda said...

I am so glad you visited. The sad truth about the CA125 test, is it just isn't ordered as routine, and it should be. It's not a 100% perfect marker, but if it's elevated at least they look into it. It's the not checking that kills women.

I too, still have my ovaries. I asked my doctor to remove them and she didn't recommend it because you can still get Ovarian cancer, without ovaries. It isn't a safety measure. The only truly way to be safe from Ovarian cancer is to be looking for it, and stop it before it spreads.

If they had paid attention to my Mothers complaints and ordered these test six months before they did, she would still be alive today. I am making it my life mission to educate woman about this disease.