Some of you may have already seen this before. This is a true story. Age 22 is the youngest known age of a woman who got it.
I didn't make this PRIVATE because I want every woman to see it, copy and paste it and send it to people you know!
With this simple blood test that doctors don't give, you can reassure yourself!!!!!
SIGNS OF OVARIAN CANCER (Even In The Absence Of Ovaries)
An Eye-Opener On Ovarian Cancer
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.
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. 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.
This 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 gastroentologist.
He ran tests that were designed to determine whether there was a bacterial 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 fore warned 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, by statistics, 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.
Copy, paste, and send this message to every woman you know.
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 that 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.
Graham and Green
I will definitely be requesting this when I go on Nov. 4th!!
1Oh wow! Thanks so much for this info, Jamers. I have my annual appt on the 23rd and I will be insisting on this.
2please do twin. with your family history and not ever having children you are at an even higher risk for breast and ovarian cancer.
3Your welcome
4Unfortunately I'm all too familiar with this type of cancer. I lost my sister-in-law (my husband's sister)3 years ago and a very close friend from childhood eight months after her from ovarian cancer.I miss them both so very much.
My younger sister works as a researcher for an Oncology and Hemotology center here.Ovarian cancer is very hard to detect from a regular exam and that's scary.
Thanks so much Jamie for passing this information on....
5There is some good info about this on Snopes:
http://www.snopes.com/medical/disease/ca125.asp
6Yikes! That original email is 10 years old.
7The Snopes link does have good info about the test's purpose and why it isn't more widely use. The idea of all the false positives scares the bejeebus out of me!
8whoa! Really? The one that I copied and pasted? Well in any case, I'm still going to ask for that blood test on the 4th! My mom had the beginnings of uterine cancer so naturally I'm kinda worried about any kind of cancer period! She was told that she could even have another kid if she wanted and she was like, 'pssshhhh I've got 4, now get this cancer infested thing out, now! She was only in her 20's when that happened too!
9That page isn't availabe for me moto! Does it say that there are a bunch of false positives? How come I wonder!?
10i think if you have a family history and are at a high risk it might be worth it even if it is false. knowing going in there are false positives has to help and at least you know you have been proactive and if you do have cancer you are being proactive.
11Here is the text from the page, Jamers:
"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.
Neither physicians nor the American Cancer Society recommend CA-125 as a screen for ovarian cancer because it yields too many false positive results. Fibroids, pelvic infections, liver disease and endometriosis can cause a rise of CA-125. Even worse, the test will often fail to detect the cancer. A doctor's reluctance, therefore, to order up this test no matter how hard she's pressured has nothing to do with not wanting to incur additional charges or waste staff time — it's purely a matter of not wanting to indulge in a test that is widely known to yield useless results.
At its best, the CA-125 test will yield a number of false positives and negatives when used as a screen for ovarian cancer. At its worst, some of those false positives will result in women undergoing major abdominal surgery that wasn't necessary as well as all the terror of thinking they had cancer in the ramp-up to those operations, and some of those false negatives will fool women who do have ovarian cancer into thinking they do not have the disease, resulting in valuable time needed to combat this killer being lost to complacency. And with ovarian cancer, time lost is quite potentially life lost.
The American Cancer Society (ACS) has come out against the use of the CA-125 blood test as a way to detect early instances of ovarian cancer. Although at first blush a 23 April 1999 article about CA-125 on the American Cancer Society's web site looks like the ACS endorses the efficacy of this test in screening for ovarian cancer, a more careful reading reveals that the ACS endorses it only as a method for tracking how well treatment is progressing. (Once it's known a patient has ovarian cancer, CA-125 can be used to monitor the progress of the disease.) Says the American Cancer Society:
Although the study finds the CA-125 blood test useful for evaluating treatment progress, the study results do not suggest the test can be used to screen for ovarian cancer. A recent email making the rounds urged women to ask their doctors for this test. For the CA-125 test to be a useful screening tool, it would have to detect most ovarian cancers in their early stages and not give positive results in women who do not have the cancer. The CA-125 test does not meet these standards.
A related 4 June 1999 article on the ACS web site reported on a study undertaken to determine if CA-125 could be used as a reliable early detection tool in the fight against ovarian cancer. In a nutshell, no, it's not suitable. Although it might prove helpful in high-risk cases when used in conjunction with a pelvic exam, it's not the answer for women in the ordinary-risk category:
The study’s results point to the poor accuracy of the screening methods used, Dr. Saslow added. "In other words, the screening tests missed too many existing cancers and falsely detected too many cancers that did not in fact exist," she said.
"In this particular study, for each of the six women who were diagnosed with ovarian cancer as a result of screening, four additional women underwent surgery unnecessarily," she said. "An additional 10 women who were screened developed ovarian cancer within eight years although the test did not detect any cancer. The poor accuracy of CA-125, even in combination with ultrasound, is the primary reason why the American Cancer Society does not recommend screening [with CA-125] for women at average risk."
And yet another article from the ACS' Ovarian Cancer Resource Center stressed that the CA-125 test is not a reliable detector of ovarian cancer in women who do not already demonstrate strong risk factors for the disease:
... some noncancerous diseases of the ovaries can also increase the blood levels of CA-125 and some ovarian cancers may not produce enough CA-125 to cause a positive test. When these tests are positive, it may be necessary to do more x-ray studies or to take samples of fluid from the abdomen or tissue from the ovaries to find out if a cancer is really present. For these reasons, transvaginal sonography and the CA-125 blood test are not considered accurate enough for ovarian cancer screening of women without known strong risk factors.
The CA-125 is clearly not the way to go for those looking for a reliable early detection test. However, it's possible measuring the levels of lysophosphatidic acid in women might provide that information. (LPA stimulates the growth of ovarian cancer cells.) In one very small trial carried out at the Cleveland Clinic in Ohio involving 10 women with early-stage ovarian cancer, elevated LPA readings pinpointed nine of them, while CA-125 readings detected only two.
Once again, the American Cancer Society had something to say about using elevated LPA readings as a detection screen. The write-up on its site is lengthy (still worth reading, though), but what it comes down to is that although early results are promising, it's still too soon to place full reliance on elevated LPA readings.
12This is nice to know. I didn't know that all you had o do is get a blood test to find out. But the false positive kind of scares me too.
13oh i didn't realize it had a high case of false negatives. hmmm.
14Not saying it isn't a decent idea if there is a history of ovarian cancer in your family, but it clearly isn't recommended for the average woman. My mom had a complete hysterectomy when I was young due to uterine cancer. I had a spot of uterine cancer removed by LEEP last October. But, that's detected with the yearly pap smear.
15
!!!!! I wonder what kind of tests are performed to check for ovarian
cancer then! Pap smears won't detect it and it just sucks for us because we have to just sit and wait to see if we get sick! There has to be 'some'thing! Maybe I should take this post down
then, y'all think so? Cause I don't want to cause a lot of women to go and get false readings!!!
16Here is what Johns-Hopkins says:
"Other tumor antigens do exist like OVXI, M-CSF, CA 15-3, and CA 19-9. Only OVXI has shown to have diagnostic potential.
There is currently a tumor marker test that measures levels of plasma lysophosphatidic acid (LPA) being developed.
A study using the LPA test showed increased levels from 9 of 10 stage I ovarian cancer patients, and all 24 stage II, III, and IV patients.
There is also a correlation between BRCA1 and BRCA2 gene mutation and ovarian cancer. Women with BRCA1 or BRCA2 mutations have a 23% chance of having ovarian cancer by age 30, and a 63% chance by age 70."
If there was something that was a pretty fair bet in the detection department, I would assume it'd be about as common as the pap smear. But, it's definitely true that stuff can always get by.
17Thanks for all of that info moto!! I'm gonna copy and paste it cause I'm sure I won't get any of those letters right while trying to talk to my doctor!!
18-Cripes, I can't even get my ass in for a mammogram, (I know, its not my ass they want to mammogram) Now I have to worry about this too!
I really need to see a doctor asap.
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19Obama: You Betcha, My Friends!
no kidding jinxy. I have orders for a mammogram that the doctor wrote up in August and I have yet to make the appointment
All this stuff is just so scary. It's all confusing too -- get the test, don't get the test. How is anyone ever supposed to know what to do
20i keep praying that by the time i hit the age i need a mammogram they will have come up with a better way rather than pancaking my boobies.
21Oh, I SO do not look forward to the boob pancaking. I don't even like the doctors feelin' on 'em at my annual exam. A few years ago, I was watching some news show about breast cancer, and they were going over a new (then, anyway) technique for biopsying breast tissue. The woman laid on a table with her boob through this hole, and a needle poked into her boob and took the sample really fast - so, it was like having the boob stabbed, basically, with a little needle that took a bit of tissue. I almost fainted.
22Well, it's good to know regardless of all the false positive results.
23good to know
24Scary stuff but good to know.
25This is crazy!
Thanks for the heads up...
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Behind every great man there is a woman rolling her eyes
26oh for those of you who fear the booby packin'!!! I had to have one of those when I was in my early 20's!!!! They didn't want to do it but I had found a lump..turns out I was just fibrocystic in my breasts but still......it was kind of uncomfortable but not as bad as you would think. I was mortified when I walked up to that huge machine though!!!
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