Very Important Medical Info. for Women

iVillage Member
Registered: 03-26-2003
Very Important Medical Info. for Women
4
Sun, 11-16-2003 - 9:22am
This is not spam and is especially relevant for a women's network -- 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. and the men ... so they can send it to the women they care about..lack of knowledge is ignorance...

 

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 had had my 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 skirts 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 removed.(Not pleasant 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. I have received at least 4 notices on this blood test from various friends over the past 6 months.  Guess I will talk to my dr. about it.


 

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 men'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. IF YOU HAVE A PROBLEM WITH FORWARDING SOMETHING AS IMPORTANT AS THIS, HERE'S A LITTLE HINT THAT MAY ASSIST YOU WITH YOUR DECISION ~ JUST PRETEND THAT THIS IS A JOKE, WHICH IT CERTAINLY IS NOT, AND SEND IT OUT TO ALL THE FOLKS YOU WOULD IF IT WAS.


THANKS.
Rita Hart Customer Support Services U. S. Agency for International Development RRB, Room B3.06-223
(202)712-4449

Internet ID: rhart@usaid.gov

Rhonda


Time invested in improving ourselves cuts down on time disapproving of others.

       ~~Rhonda~~


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iVillage Member
Registered: 11-16-2003
Sun, 11-16-2003 - 3:36pm
From Snopes.com: This message has been circulating on the Internet since November 1998.

Here's the whole story: http://www.snopes.com/toxins/ca125.htm

iVillage Member
Registered: 03-26-2003
Sun, 11-16-2003 - 6:49pm
Thanks, but I'm still going to request it.

Rhonda


Time invested in improving ourselves cuts down on time disapproving of others.

       ~~Rhonda~~


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Avatar for judywalk
iVillage Member
Registered: 03-26-2003
Sun, 11-16-2003 - 10:07pm
This caught my eye, so I thought I'd write a response.

My sister was diagnosed with ovarian cancer (stage III C) 2. 5year ago. We've all become ovarian cancer advocates, and work to raise awareness and effect change.

CA-125 can be a useful screening tool when it's used in conjunction with a transvaginal ultrasound and pelvic exam, but for women who are pre-menopausal, there are so many factors which can cause CA125 to be elevated, including endometriosis, pregnancy, etc.

Overall it is NOT considered a blanket screening tool. Once diagnosed with OVCA, if the ca-125 was initially elevated (my sister's was over 900), it can be a way to track remission (hers has been below 15 since finishing chemo.)

But if you have the symptoms discussed, then it's time for doctors to take you seriously and do the TV ultrasound and a CA125.

Many in the ovca community recognize this page on the Johns Hopkins site as providing good comprehensive info the CA125. The link is: http://ovariancancer.jhmi.edu/ca125qa.cfm

While the CA-125 is not a reliable screening test along the lines of pap smear, I am glad to see more info about OVCA out there.

There is also legislation that we're trying to get passed that would require docs to provide information to women about ovarian cancer. Please contact your reps today and ask them to sponsor it! Here's a link for more info: http://congress.nw.dc.us/sgo/mail/oneclick_compose/?alertid=3577746

And remember, if you suspect gynecologic cancer (ovarian, uterine, endometrial, cervical, vaginal, etc) be sure to see a gynecologic oncologist. They are the experts!

Judy

iVillage Member
Registered: 03-26-2003
Sun, 11-16-2003 - 11:03pm

Thanks for such an excellent and informative post. I'm happy to hear that your sister is in remission.


I had heard about the CA-125 test after Gilda Radner's death, and that her husband and others were encouraging women to have the test done in conjunction with others. That's what I plan to start doing. I feel that every bit of information we can get is that much more help we have in early detection and treatment. I will definitely check out the links you posted.

Rhonda


Time invested in improving ourselves cuts down on time disapproving of others.

       ~~Rhonda~~


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