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Signs of Ovarian Cancer

lilliepad
16 years ago

I received this e-mail and thought it was important enough to post here.I never knew much of this.

SIGNS OF OVARIAN CANCER (even in the absence of Ovaries) THIS IS A MUST TO READ TO THE END ...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, 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 wa s 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 kno w 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 our 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.

Comments (16)

  • golfergrrl
    16 years ago
    last modified: 9 years ago

    Sorry, but it's another old urban legend that is not true.
    It's been going around for 10 years or so.
    The CA-125 test is not reliable. It yields too many false positives.

    Here is a link that might be useful: urban legends

  • lilliepad
    Original Author
    16 years ago
    last modified: 9 years ago

    It may be an urban legend but I did some searching on my own after your response,(which I would recommend every woman to do) and found a lot of information.All the places I looked did mention the CA 125 as a tool,along with other procedures,in diagnosing ovarian cancer.Maybe it shouldn't be done as a requirement in every checkup,but if it might save a life,why not? Why discount it just because Snopes says the original e-mail is false?
    The symptoms are correct,whether it is an urban legend or not,and that alone might get someone to thinking they need to see a doctor.
    Some information from the American Cancer institute and WebMD:
    Blood tests: Your doctor may order blood tests. The lab may check the level of several substances,including CA-125. CA-125 is a substance found on the surface of ovarian
    cancer cells and on some normal tissues.A high CA-125 level could be a sign of cancer or other conditions. The CA-125 test is not used alone to diagnose ovarian cancer.
    This test is approved by the Food and Drug Administration for monitoring a woman's response to ovarian cancer treatment and for detecting its return after treatment.
    Early ovarian cancer may not cause obvious symptoms.But,as the cancer grows,symptoms may include:
    * Pressure or pain in the abdomen, pelvis, back, or legs
    * A swollen or bloated abdomen
    * Nausea, indigestion, gas, constipation, or diarrhea
    * Feeling very tired all the time
    Less common symptoms include:
    * Shortness of breath
    * Feeling the need to urinate often
    * Unusual vaginal bleeding (heavy periods, or bleeding after menopause)although most women who develop ovarian cancer have no known risk factors for the disease,half of all
    cases are found in women over 65.Other factors that might increase a woman's risk of developing ovarian cancer include long-term use of fertility drugs,not having any children,
    late menopause,or young age when menstruation starts.

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  • yborgal
    16 years ago

    It won't hurt to have this test run, but as Linda said, there are too many false positives for it to be considered reliable.
    The best defense is knowing what's normal for your body, regular check-ups and a GYN who is thorough in his/her examination of you.
    It also helps if your GYN is also an GYN/Oncologist who knows what subtle signs to look for.

  • kayjones
    16 years ago
    last modified: 9 years ago

    I have a dear friend - my best friend - who was on a trip to New York with her sister, and started having severe abdominal and lower back pain - it got so bad, she was forced to go to the emergency room.

    This woman is 50, has always eaten healthy food and was very healthy. A thorough exam proved that she had ovarian cancer. She is battling it yet today - get checked for it - you won't have a clue you have it until it's too late!

    I just called my doctor's office and asked him to order one for me, because I DO have some of the symptoms. Remember: feeling 'poorly' and being in pain and tired all the time is NOT a normal part of aging!

  • grammahony
    16 years ago
    last modified: 9 years ago

    My Grandma was 90 years old when she got ovarian cancer. She'd beat colon cancer 25 years earlier. But at 90, she chose not to do any chemo or treatments.
    I'm going to ask for that test with my next exam (which is soon). It's in our family, like breast cancer is. It won't hurt. That's all I have left is 1 ovary. But, you don't need any I guess.
    Leslie

  • anettemartinrn
    16 years ago
    last modified: 9 years ago

    The CA 125 is a reliable test approved by the FDA and the AMA. It, along with many other tests, does have a risk for a false positive. So does the pap smear. I would encourage everyone to have this test done on a regular basis as established by your age and health risks. Discuss this with your health care provider and encourage others to do so as well.

    lindakathy, whether the story is true or not is trivial. Your post seemed to discourage others from being tested.

    anette

  • renee01
    16 years ago
    last modified: 9 years ago

    I agree with Anettemartinrn, whether the original story of Kathy West is true or not is trivial.

    Ovarian cancer is true and the fact that it is almost a totally silent cancer is just as true. How do I know? I have it. And I had no signs in the beginning.

    Most of you will not recognize my name - I used to post here years ago and only recently began lurking again.

    Last fall, I started to have serious pain when having a bowel movement. Thinking I had Irritable bowel syndrome, I let it go for a few weeks before finally making an appt. with a gastroenterologist. It was only then discovered after a series of tests that I have advanced cancer. By the time I found out I had it, it had already spread throughout my peritoneal cavity.

    I immediately went to Memorial Sloan Kettering Cancer. The doctor told me most women 'present' as Stage 3 or even 4 because it's very hard to detect in the early stages.

    I had an extremely painful operation on January 2. They literally opened me from my groin to my rib cage, took every single organ out, and removed all the visible tumors. They were everywhere, my abdominal lining, my bladder, my colon (they had to resection a part of it), my diaghragm, and a tissue inside my abdomen called the 'omentum' which was also removed.

    I'm still not recovered from the operation, yet had to start my first round of chemo on February 5. I will have to go through 6 rounds of chemo. The first round has sucked; I cannot imagine what it's going to be like to go through the next 5.

    Once this cancer is in Stage 3, the return rate is really high and the 5-year survival statistics are not good. I can't even begin to express how depressed and angry I've become, how in fear for my life I am every single day, not knowing what's going to happen with me.

    I've never been sick in my life, always healthy. I ate right and exercised. I'm only 43 years old.

    I too was discouraged by my gynocologist from taking the CA125, because of the false positives. If I had the chance do it again, I'd take that CA125 anyway, false positive or not, even if I had to pay for it out of my own pocket. I would have insisted. I wish it would become a mandatory test.

  • anettemartinrn
    16 years ago
    last modified: 9 years ago

    Oh gosh, Renee. How sad. Thanks though for posting, hopefully others will see this and be screened before they face what you are facing. Keep posting.

    anette

  • lilliepad
    Original Author
    16 years ago
    last modified: 9 years ago

    "lindakathy, whether the story is true or not is trivial. Your post seemed to discourage others from being tested."
    Thanks Annette.....
    Thankfully this thread has done what I hoped it would do.Regardless of the controversy as to whether or not the test is 100% reliable,the story is true! It has made people aware of this disease and possibly saved someone's life! I never knew about this type of cancer and surely didn't know it affects more women over 50.I am 66 and haven't had a gynecological exam in years,didn't think I needed them anymore.I thought it wasn't as necessary after menopause and just never worried about it.I will be getting one and will insist on the CA125 blood test and go from there! I have a couple of the symptoms,which probably means nothing,but I will have it checked out anyway.My mother was 88 when she died almost 4 years ago.I'm sure the only gynecological checkups she had were when she had me and my older brother and I remember she had some problems when she was going through menopause but after that,never! Up until about a year and a half before she died she was pretty healthy,physically,but I remember that she had complained about some diarrhea,constipation and stomach pain off and on but nothing she considered too serious.She started having more severe stomach problems about that time and would double over with pain at times and her stomach would be bloated.She was checked several times by her doctor and nothing was ever diagnosed.They did say she had diverticulitis,which would explain the symptoms she was having.I am wondering now if this could have been her problem.Of course now we will never know.
    Renee-You are in my prayers!

  • western_pa_luann
    16 years ago
    last modified: 9 years ago

    "The CA 125 is a reliable test approved by the FDA and the AMA."

    Could you please post those links to the FDA and the AMA?

    I wasn't aware that both groups approved CA-125 for screening purposes...
    I thought the test was just a tool to monitor residual cancer in patients after surgery.

  • kayjones
    16 years ago
    last modified: 9 years ago

    Luann, you are right - this blood test is used to manage, rather than diagnose, cancer.

    Please read the information at the site below.

    Here is a link that might be useful: CA-125 and cancer

  • kartwheel
    16 years ago
    last modified: 9 years ago

    Your insurance company does need to cover a test you simply requested, and CA_125 is expensive.

  • lilliepad
    Original Author
    16 years ago
    last modified: 9 years ago

    "Luann, you are right - this blood test is used to manage, rather than diagnose, cancer."

    This is only partly true.Yes,the primary purpose of this test is to manage the disease,but in every article I have read it says it can also show the possibility of ovarian cancer,and is used along with other diagnostic procedures.Obviously the test is done and if it is positive (false or not) the other procedures are done.The cost of the test in my area is About $125.00.
    I look at it this way,if I have the test and it shows that there "could be" a possibility and further tests are recommended,whether it is a false positive or not,I have spent a very little bit of money to find out about something that could kill me! I have no insurance but it would be well worth that money out of my pocket to know.
    And,as far as I'm concerned the OP has done what it was intended to do.We are discussing,and doing something about a disease that can be treated if found soon enough!

  • anettemartinrn
    16 years ago
    last modified: 9 years ago

    Yes, I had a CA 125 done when diagnosed with a grapefruit sized segmented ovarian cyst. As a Screening Test, prior to surgery. My doctor wanted to check the level preop in case the tumor ruptured during surgery. Luckily, it did not.

    Luanne, as a medical professional, I dont necessarily have the link you requested. But as I work under the guidelines of both, I am aware of tests that are approved. It is part of my responsibility toward my patients to inform them of routine medical procedures that may enhance their health. So, no, I cant link you to a spot that says "we think this is great". Sorry.

  • marygailv
    16 years ago
    last modified: 9 years ago

    I didn't read the whole thing, but I did want to say it is important to have a urine test. I hadn't had one for years from my previous doctors and moved to a new state and a new doctor and he had me go through a lot of tests, including a urine test. I have never had any bladder infections or problems, but blood showed up in my urine. After several urine tests he sent me to a urologist who found cancerous cells on my bladder. I had those removed and now, after my second third month test since my procedure, there is another small spot that will be removed this Friday.

  • golfergrrl
    16 years ago
    last modified: 9 years ago

    "lindakathy, whether the story is true or not is trivial. Your post seemed to discourage others from being tested."

    Yeh, cuz it's a waste of money.