An Eye Opener on Ovarian Cancer

  1. From Sue: (Reader's Digest version) - Women, ask for an inexpensive
    CA125 blood test when getting pap test to detect ovarian cancer.

    An Eye Opener on Ovarian Cancer

    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" 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. 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.

    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 give 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 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.
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  2. 28 Comments

  3. by   suehp
    Thank-you for this...my Gran died of Ovarian Cancer so I am aware of the fact that I am at risk .....I am going to try and find out whether this blood test is available in the UK...thanks again
  4. by   skislalom
    also and died of breast cancer. It practically took an act of God to talk my doctor into doing the CA125 on me. Her excuse...you're too young (I was 31 or 32 at the time). I changed doctors and I've had this test yearly for the last 6 or so years as part of my annual exam. I didn't take NO for an answer, I changed doctors. My mom was only 38 when she was 'diagnosed' with ovarian cancer...the tumor was EIGHT pounds (fully contained though!). My doctor explained to me that the CA125 is a great tool for those that have already had ovarian cancer...but it is not normally used as a routine test, which means you have to request (demand) it-especially if you are at risk.

    ~T
  5. by   VickyRN
    Thanks, Fran, for the info! A dear lady at my church had the primary peritoneal cancer and the symptoms were just like Kathy (in your post) described. She was in her late 50's/early 60's and the abdominal swelling and bloating was what really caught her attention. My friend's recovery from this aggressive cancer was nothing short of miraculous
  6. by   RN-PA
    Thanks for posting this, and I hope many women will read it and pass it on to their family and friends. I had a close friend I'd gotten to know in pre-nursing clases in 1991 and she died from ovarian cancer in 1994 at the age of 43. She was very thin and first noticed her stomach had developed a bulge, and thought she just needed to do more sit-ups. She was treated for what her doctor thought was a UTI that didn't clear up with antibiotics. I'm not sure how her doctor finallly determined it was ovarian CA, but my friend died around 2 years after the diagnosis. She was heading toward a masters degree in nursing program to be a nurse practioner and would've been wonderful. When she was hospitalized for the last time, her classmates in her BSN program performed a graduation ceremony/celebration and gave her an honorary "degree". I still miss her......

    I have another friend who was diagnosed with ovarian cancer at around the same time this other friend was diagnosed, and she's been battling ovarian CA for 11 years! She was one of the first to receive Taxol and has had many chemotherapy treatments and surgeries. The cancer was recently detected in her lungs and she keeps fighting it but has been told she can't have any more surgeries.

    I obviously also believe the CA125 test should be routine for women even if there's no family history. We get mammograms and pap tests so why not a simple blood test? By the time ovarian cancer produces symptoms, the damage has been done.
  7. by   FranEMTnurse
    You are all very welcome. I hope you will pass this info on to your friends and loved ones. When my niece was 30, her stomach began swelling also. She went to a gynechologist, who immediately took a CT scan, and learned she had a tumor the size of a football. Thankfully, it was benign. I truly believe she had supernatural protection.
  8. by   BernieO
    Hi
    I am a 2 year survivor of ovarian cancer and am facing my 1st recurrance. I have spent conciderable time studying ovarian cancer; causes, symptoms, and treatment. I 1st read layman' basic material, then nursing journals & books ( I have been an RN for 30 years), then I purchased physician's textbooks on ovarian cancer.

    The CA125 test is not on its own a reliable indicator of ovarian cancer. The best triad for diagnosis is a recto vaginal exam, transvaginal ultasound and a CA125. These 3 give a better picture of ovarian cancer but still not the best. The CA125 can be elevated with inflamations, endometriosis, menstrual periods, and a host of other things. At this time, sadly the only true diagnosis of ovarian cancer is an ovarian biopsy. There are new screening tests being researched but not available yet.

    My sisters all get the diagnostic triad every year (TV US, physical exam, and CA125). This gives them some chance of early detection.

    Also, please if a gyne cancer is suspected, especially ovarian, seek the experience of a gynecological oncologist. They are the experts in surgery for ovarian cancer including debulking surgery with staging and treatment.

    Everyone needs to be aware that ovarian cancer is no longer the silent disease but is a disease that whispers.

    Thanks
    Cindy
  9. by   skislalom
    Yes, that is so true. I have the Transvag U/S as part of my yearly, along with my CA125. I usually have the US about an hour before my appt and we get it all done in one day. It's really a huge relief to have the "everything is normal" results at the end of the day...they call me later with my CA125 results. Now I'm experiencing the joy of abnormal mammograms. Can you say BRCA 1 gene in my family. We didn't get the genetic testing done before my mother died but we had talked to genetic counselors-you just can't be too lax when you've got a family history

    The US gives me the biggest sense of relief...SEEING that everything is okay in there.

    ~T
  10. by   Chaya
    So sorry for what Kathy West went through. The problem is that there really isn't a reliable diagnostic test for ovarian cancer in the early stage; it is typically asyptomatic until advanced. The Ca-125 test is inconclusive unless greatly elevated. I sure hope we can come up with some better diagnostic testing to stem this disease!
  11. by   FranEMTnurse
    Quote from Chaya
    So sorry for what Kathy West went through. The problem is that there really isn't a reliable diagnostic test for ovarian cancer in the early stage; it is typically asyptomatic until advanced. The Ca-125 test is inconclusive unless greatly elevated. I sure hope we can come up with some better diagnostic testing to stem this disease!
    Thank you all, for enlightening me even further. I hope we can too.
  12. by   chris_at_lucas_RN
    And I thought I was safe! I thought one bit of good out of the hysterectomy and bilateral oophorectomy was that I could never have "female" cancer--the one I feared most.

    Thanks for the heads up about CA-125. Maybe if enough of us push to have the test, it will become as common as the pap smear, and as cheap.

    Thanks, Fran.
  13. by   FranEMTnurse
    Quote from chris_at_lucas
    And I thought I was safe! I thought one bit of good out of the hysterectomy and bilateral oophorectomy was that I could never have "female" cancer--the one I feared most.

    Thanks for the heads up about CA-125. Maybe if enough of us push to have the test, it will become as common as the pap smear, and as cheap.

    Thanks, Fran.
    I sure hope so, Chris. It would definitely be a plus for all women.
  14. by   hock1
    I heard about this test also, but was told by my insurance company that this test is not a 'catch all' kind of test and that it's usfullness was in question. My doctor doesn't recommend the test for routine purposes either. Still, for something as 'deadly but treatable if caughter early' as ovarian cancer; if a woman has risk factors, it should be covered. Look how long it took to get mammograms covered. We nurses should keep on it. Great post.

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