Latest Blog Article: New IC Patient Survey From USC Seeks To Understand The Impact of Diagnostic Delays In Women With IC/BPS.
Results 1 to 10 of 10
  1. #1
    ICN Founder icnmgrjill's Avatar
    Join Date
    Mar 2000

    Exclamation An Eye Opener For Women - Ovarian Cancer misdiagnosed as IBS

    Advertisement :
    I'd like to thank Rhonda/dixie for emailing this to me. I think this is a very important message to share with other women. Please note, however, that the swollen belly that she refers to is NOT the classic IC belly. The IC belly is known for coming and going... whereas, in this case, her swollen belly was due to LOTS of excess fluid that had to be drained out. Very different scenarios. - Jill

    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 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!


    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.


    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.
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality.

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.

  2. #2
    ICN Member Kara29's Avatar
    Join Date
    Oct 2005
    Central, NY


    Thanks for passing this information on Ladies!


    My mom is a lab tech and she can run any test she wants to on me at any time so this information was great to know! I talk to my OBGYN tomorrow anyway about some test results and I will make sure to ask if they screen for CA-125. THANK YOU!


  3. #3
    IC Friend StephanieS's Avatar
    Join Date
    Mar 2006
    Oromocto, New Brunswick, Canada


    I have IC as well as IB. I am very bad and am not responsible about having pap tests and things. I am undergoing DMSO treatments so I can do it after having that. It's more painful and more intrusive. Anyway, my comment is that I have been fighting my abdomin problem for years and always thought it was fat. I feel bloated all the time and am small everywhere else. Recently I have been asked twice if I was pregnant. It's very depressing. I thought it might be the DMSO treatments but now I will get this test done. I also passed it on to 20 of my friends.


    Have tried DMSO and other treatments but gave up and came off all meds. Canada likes to keep people in pain!!
    Diagnosed in 2005 but suffered since 1998.

  4. #4
    ICN Member sandramac's Avatar
    Join Date
    Dec 2004
    Toronto Canada


    Thanks for the life saving Info! Hugs Sandra

  5. #5
    ICN Member
    Join Date
    Jul 2002
    New York, NY
    While this test can save many lives it can also give false positives especially if you have endometriosis or fibroids. I have endometriosis and when I asked my Dr. for this test he told me the number would be elevated. Also if you Google CA-125 you will see that this email is an urban legend - the story is true but the author changed the way she wrote it in 2000 - the original email is from 1998. This is a quote from the website -"While the story recounted above is the actual account of one woman's experiences, it is not accurate in its advice. Its author, Carolyn Benivegna, penned the now widely-circulated missive in 1998 (the original of which is viewable here). She has since had opportunity to reflect on further information about the CA-125 test and its efficacy as a screen for ovarian cancer and in 2000 posted a revision of her original message. Although the CA-125 test was her salvation, it is not necessarily useful to everyone. Please don't rush off to pressure your doctor into ordering one for you."

  6. #6
    ICN Member Silverfern's Avatar
    Join Date
    Jun 2005
    New Zealand
    My best friend died of ovarian cancer three years ago and since then I've become very interested in it. From what I've ascertained, not everyone can rely on the CA125 test as an indicator of ovarian cancer. For some women it can be relied on totally as an indicator of cancer, but in other women they can have fully fledged ovarian cancer and yet their CA125 is within normal range. It's a very individual thing. Also things like fibroids, endometriosis and even certain infections can elevate levels too. I doubt whether you'd find any doctor who would do one as part of a normal annual checkup unless there were symptoms to back it up.
    ~ Lynne ~

  7. #7
    ICN Member TerriT's Avatar
    Join Date
    Feb 2005
    Vancouver, WA
    I found this link which helps explain CA-125 and other Ovarian cancer markers. It is a link to John Hopkins Pathalogy.

    Hope this helps, but it sounds like all of them are a hit or miss depending on how advanced the cancer is.


  8. #8
    ICN Member Dixiefireball's Avatar
    Join Date
    Jan 2003
    South Carolina USA
    I just hope this reaches all woman out here. Even tho. I just had a hy. a little over a year ago this is still a huge eye opener! Just like IC we got to spread the word in order to help each other.

    Thank you Jill for posting this information so all would see and read it.

    Medicine taken daily or as needed:
    1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
    2. MS.Cotin 100mg 3x daily
    3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
    4. Fentanyl 100 mg Change every 48hrs.
    5. Gentamicin 80mg install after each rescue treatment
    5 Leviquin 500mg self start as needed.
    6. Klonopin 1 or 2 daily as needed.
    7. Prosed/DS as 1 every 6hrs as needed.

    I have IC, but IC doesn't have me anymore!

  9. #9
    Registered User 1blessed's Avatar
    Join Date
    Jul 2006
    I am just so stunned. I just sat here and read this to my husband. Thanks for the info. Women we have just got to be more presistant. I know that I am sometimes my husband looks at me strange and I tell him I know my body and I know when there is something wrong . I know where there is pain and swelling there is something causing it. I think that if she had not been so presistant who knows what would have happend. She could have passed away on her trip with not knowing the reason for her death. Scarrrrrrry!!!!!!
    1 blessed

  10. #10
    ICN Member readingmom's Avatar
    Join Date
    Nov 2003
    My mom had stage 3 ovarian cancer five years ago and she lived to tell about it, but I know that many women don't. I just had to share a little bit of her story because I think it's very important for people to hear. She had been hurting for several months before she finally went to the doctor. By that time, her abdomen was greatly distended and she could hardly go to the bathroom(either way). They tried to say that she was just constipated and put her in the hospital to try and help her get "unconstipated". At one point they SENT HER HOME. She could hardly breathe by this time because of the fluid pushing on her diaphram. That was just her ashtma, so they said. They SENT HER HOME at one point. She knew that she was dying and she told me so. It was awful. We finally went back to the hospital again and they admitted her, but it was the weekend so they didn't do a CT scan until Sunday. Then they transferred her to a bigger facility on Monday. She didn't have surgery and find out it was stage 3 cancer until Wednesday night. The doctors told us she probably would never come off the ventilator. But by God's grace, she was up smiling and talking to us the next day. She went through 8 months of chemo and has been closely monitored over the last five years. We are one month from a major milestone in the life of an overian cancer SURVIVOR!! I know that not many people make it this far, and I am so thankful for the last five years that I have had my mom. I say all of this to make a point. Ladies, we must be vigilant in our healthcare. They were going to let my mom die!! We know our bodies better than anyone. Please, please, listen to it. I'm so glad that my mom didn't give up. She could have, she had every reason to. She couldn't hardly breathe, walk, use the bathroom, and they STILL didn't want to do anything. Praise God for a great doctor in the end!! Their are still happy endings out there!!!

Thread Information

Users Browsing this Thread

There are currently 1 users browsing this thread. (0 members and 1 guests)

Similar Threads

  1. Replies: 13
    Last Post: 04-02-2017, 08:31 AM
  2. Vitamin D (From sun exposure or OTC) Dramatically Reduces Risk of Breast Cancer
    By icnmgrjill in forum The Latest IC, BPS & Pelvic Pain Research
    Replies: 0
    Last Post: 07-26-2006, 09:12 AM
  3. Please advice everyone...very very tense
    By sabin in forum Not Diagnosed Yet with Interstitial Cystitis?
    Replies: 14
    Last Post: 03-05-2006, 07:33 PM
  4. Elmiron Breast Cancer Article
    By Portia17 in forum Elmiron For Interstitial Cystitis IC/BPS
    Replies: 7
    Last Post: 04-12-2005, 10:57 AM


Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts