These are random musings of my life journey, the people, animals, places, and events which have woven, and continue to weave, a tapestry that is me. We all know there is no real destination, only the ongoing experiences which blend together, creating the trail. Each step gives a glimpse of what is to come, without allowing me to see the end result. It is exciting. I have a home base that is mine, that gives me a place to rest. This is it. This is where my heart is, no matter where I journey...................

Monday, January 12, 2009

Ovarian Cancer

I'm posting this here because I hope to read even more people than I would by emailing it to everyone.

Please read and share with women you love. And Ruth, would you like to add anything?



THIS IS A MUST TO READ TO THE END

I hope you all take the time to read this and pass it on to all you can. Send this to the women in your life that you care about.

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

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' C A-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.

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. PLEASE TAKE A MOMENT TO SEND THIS OUT TO ALL THOSE YOU CAN. BE IT MALE OR FEMALE, IT SHOULD NOT MATTER, AS THEY CAN FORWARD IT ALSO TO THOSE LOVED ONES THEY KNOW.

12 comments:

  1. One of the reasons I choose to have a hystorecotmy was I kept developing pre cancerous polyps. Am I worried about the ovaries (they left them) yes. I dont know much history about my moms family and all my dads siblings have died of some form of cancer. So I need to be firmer with my doctor. The pictures are up of the snow on my blog.

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  2. Lyn you betcha I have some comments, but going to take a lot of room here so I think I will e-mail you and then you can cut and paste or do whatever you need to, to make your blogger friends aware of the seriousness of this dreaded disease......not called THE SILENT KILLER for nothing.

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  3. It's a tough watch, but I highly recommend that all women see the film WIT, starring Emma Thompson. Nothing motivated me to learn the facts and be aware like that film. We need to know facts and be proactive with our health!

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  4. Bobbie, I don't blame you for your caution. It's important to not be overly anxious, but we can't ignore signs.

    Ruth, Good. I'll wait for it and put it up when it arrives. Thank you.

    Sandra, I had not heard of it, but after reading a review, I'll bet it would be motivating. Yes, we all need to watch for the little signs of change in our bodies, even if we feel silly or hypochondriacal. I'd rather feel that than the pain of treatment.

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  5. Thank you very much for sharing this. I suppose one could say I'm "lucky" because I'm watched so closely for lots of cancers, including ovarian (even though I don't have ovaries anymore). And the CA-125 test is so simple. My OB/GYN in Little Rock was one of the doctors to work on that test.

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  6. Jen, I'll share anything that might save a life. We are far to uneducated about the signs of serious illnesses.

    Boy, didn't you luck out to have a doc so on top of it!! I just found out about a connection I have to an exciting development in this field, but I can't talk about it because it is still under wraps. I can hardly wait to share it!

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  7. That's exciting!! I can't wait to hear it!

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  8. I'll do so as soon as I'm given permission!!

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  9. Wow that really is sobering info.

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  10. MQ, it is, isn't it? But good to know.

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  11. I'm in the process of writing about a character who dies of ovarian cancer, so this kind of information is priceless to me in more ways than one. THANK YOU for sharing. I'm so glad that you took your health into your own hands and are here to share!! So many women don't.

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  12. Catherine, cool timing! I'm glad to hear about another book in the cooker!

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If you have something to say about it, just stick out your thumb, and I'll slow down so you can hop aboard! But hang on, 'cause I'm movin' on down the road!!! No time to waste!!!