Hi George, Will you please post this on my site and any other site you think is appropriate. The women out there should at least get a chance to read this and the guys should copy and pass it on to their loved ones. It was passed on to me through one of the on line cancer support groups. I am involved in helping cancer patients get through trying times. This could help save lives. Thanks..Bill
Folks, as a nurse, I am very familiar with this test. I've sent it not only to women but to men on my list so that they can show this to their wife or significant other. Please read this carefully because it may help you or someone you know. If you doubt the validity of this test, please get in touch with your local branch of the American Cancer Society. Thanks for your attention.
CANCER AND THE CA 125 BLOOD TEST
Years ago, actress 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 too late. She wrote a book to heighten awareness. Gene Wilder is her widower.
This is my friend Kathy's Story:
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! 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 monthly Self-Breast Exam, went to the dentist at least twice/year, etc. I even insisted on a sigmoidoscopy and a bone density test last year.
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 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 procedure, 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, 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; DON'T 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 ONE DONE IN THREE OR SIX MONTHS AND KEEP A CLOSE EYE ON IT, JUST LIKE WOMEN DO WHEN THEY HAVE FIBROID TUMORS OR WHEN MEN HAVE A SLIGHTLY ELEVATED PSA TEST (Prostate SPECIFIC ANTIGENS) THAT HELPS DIAGNOSE PROSTATE CANCER. HAVING THE CA-125 TEST DONE ANNUALLY CAN ALERT YOU EARLY, AND THAT'STHE GOAL IN DIAGNOSING ANY TYPE OF CANCER - CATCH IT EARLY!!!!!
Do YOU know 55 women? If so, at least one of them will have this VERY AGGRESSIVE cancer-and maybe, just maybe, it will be YOU. I hope not! Please, go to your doctor THIS WEEK 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. As the Nike ads say, "JUST DO IT!" Please don't think youth will protect you either. 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 not a factor.
Note from Lisa:
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 screening (which Ron's doctor automatically gives him in his physical each year and insurance pays for). I called my 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. So I am having this blood test this Friday. 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."
Pass this information along to every woman you know.
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gmattson
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Thanks for your response Ian. I can appreciate what you are saying about this test, but isn't the same true for quite a few other medical test?
What tests do you feel people should take that do not give false positives or negatives and which ones are the most suspect?
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GEM
What tests do you feel people should take that do not give false positives or negatives and which ones are the most suspect?
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GEM
For women!
Periodicaly this email pops up again. Last time I heard about it, it was in medical school when a woman who had received it came in terrified that she needed it right away.
Nope.
The reason doctors do not do this test routinely is that it is not routinely useful. The doctors are NOT hiding away some lifesaving test to save a few bucks or something. They do not do this test because it is not accurate enough to be used as a screening test.
Here's an illustration. Tests have two important characteristics, sensitivity and specificity. Sensitivity is the percentage of afflicted people the test picks up. If 100 people have the condition and 90 test positive, the sensitivity is 90%.
Specificity is the percent of people who test positive that actually have the condition. If you look at 100 people who tested positive and only 20 actually have the condition, then the specificity is 20%.
The utility of tests depends on the population in which they are used. If you have a group that is 50% positive for some condition, most of the people will be correctly diagnosed by a test even if it makes a few mistakes. The number of true positives will outweigh the number of false positives, for example, because there are so many people with the condition.
But let's say there's 100,000 people only 100 of which have a condition. Let's say the test will have 95% sensitivity and specificity. Sounds pretty good, doesn't it?
Of the 100 people with the condition, 95 will be picked up by the test and five will be told there's nothing wrong when there is. That's not so bad.
However, because the test is only 95% specific, 5% of people will be told they have the condition. 99,900 people do not have the condition. The test will correctly tell 95% of them or 94905 that nothing is wrong. However the other 4,995 people will be told they have the disease when they don't.
The positive predictive value, or % of tests that are (+) when they should be, is only 95/4,995 or 2%. 98% of the tests scare the dickens out of the person tested and lead to unnecessary tests to rule out the disorder.
And if the test is LESS sensitive, then all these false positives come WITHOUT even picking up a lot of the real cases.
DO NOT get this test unless a (smart) doctor tells you you need it.
I will look up the sensitivity and specificity of this test and re-post with more information. Also, I'll post more about the signs of ovarian cancer. The guidelines above are NOT useful, although those symptoms should be checked out.
Incidentally the best way to avoid ovarian cancer (besides having them removed, usually in postmenopausal women having some other abdominal surgery and removing them while they're in there) is taking birth control pills. These prevent ovulation and decrease inflammation thought to lead to some forms of ovarian cancer.
Nope.
The reason doctors do not do this test routinely is that it is not routinely useful. The doctors are NOT hiding away some lifesaving test to save a few bucks or something. They do not do this test because it is not accurate enough to be used as a screening test.
Here's an illustration. Tests have two important characteristics, sensitivity and specificity. Sensitivity is the percentage of afflicted people the test picks up. If 100 people have the condition and 90 test positive, the sensitivity is 90%.
Specificity is the percent of people who test positive that actually have the condition. If you look at 100 people who tested positive and only 20 actually have the condition, then the specificity is 20%.
The utility of tests depends on the population in which they are used. If you have a group that is 50% positive for some condition, most of the people will be correctly diagnosed by a test even if it makes a few mistakes. The number of true positives will outweigh the number of false positives, for example, because there are so many people with the condition.
But let's say there's 100,000 people only 100 of which have a condition. Let's say the test will have 95% sensitivity and specificity. Sounds pretty good, doesn't it?
Of the 100 people with the condition, 95 will be picked up by the test and five will be told there's nothing wrong when there is. That's not so bad.
However, because the test is only 95% specific, 5% of people will be told they have the condition. 99,900 people do not have the condition. The test will correctly tell 95% of them or 94905 that nothing is wrong. However the other 4,995 people will be told they have the disease when they don't.
The positive predictive value, or % of tests that are (+) when they should be, is only 95/4,995 or 2%. 98% of the tests scare the dickens out of the person tested and lead to unnecessary tests to rule out the disorder.
And if the test is LESS sensitive, then all these false positives come WITHOUT even picking up a lot of the real cases.
DO NOT get this test unless a (smart) doctor tells you you need it.
I will look up the sensitivity and specificity of this test and re-post with more information. Also, I'll post more about the signs of ovarian cancer. The guidelines above are NOT useful, although those symptoms should be checked out.
Incidentally the best way to avoid ovarian cancer (besides having them removed, usually in postmenopausal women having some other abdominal surgery and removing them while they're in there) is taking birth control pills. These prevent ovulation and decrease inflammation thought to lead to some forms of ovarian cancer.
For women!
It depends on the test. There are a few famously useless medical tests. One is the ESR, a measure of inflammation. Medical students are often told it means nothing more than that the lab is open. A more commonly used one is tests for blood in the stool. They are frequently positive when nothing is really there, leading to recommendations to have a colonoscopy to look for colon cancer. But, colonoscopy to look for colon cancer is recommended for people over 50 anyway and some think the only value of the stool tests is that they lead to the colonoscopies which sometimes find things by chance that end up saving a life.
The PSA remains a controversial test because the normal range overlaps with the abnormal, so "high" PSAs can lead to such fun as transrectal ultrasounds or biopsies of the prostate which turn out to be normal. As of 1996 the evidence was that the PSA lead to detection of some prostate cancers (many of which were slow growing) leading to therapies that decrease quality of life (ask pre viagra Bob Dole) WITHOUT lengthening life because prostate cancer is often something you die with rather than die from. There is some preliminary evidence that death rates may have dropped because of the PSA detecting cancers early, but it's still hard to know whether to recommend a PSA to a guy or not at this point.
The tricks: First, in what population is the test being used? If the condition is relatively common and the test relatively accurate, most tests will be accurate. If the condition is rare most of the tests will be bogus, like in the above example where if you test "positive" for the condition there's a 98% chance you don't have it!
Second, is the treatment benign? Chlamydia is common among young sexually active people and the test is simple and harmless, and the treatment is well tolerated and efective, and the condition while often silent can cause serious problems. So screening makes sense. Then of course there's the test. We could all have surgeries to look for cancer but that'd be dangerous and unpleasant. Taking a blood pressure each time you see the doctor is harmless however.
Third, is the information worth having? Tests should pick up diseases at a point where an intervention is useful. Screening for early cataracts isn't useful because you don't do anything about them till they noticeably bother vision anyway, so why know about it early? If a test for cancer that has already spread and is untreatable is developed, people would just hear bad news early. Maybe get some toxic chemo that doesn't turn out to help.
The simplest rule I've learned is what I call the Bickston Booger Rule after an advisor I had. Basically, it says that ordering a medical test is like picking your nose. You have to know what you're going to do with the result, and whether you really want it, before you go digging.
[This message has been edited by Ian (edited June 02, 2002).]
The PSA remains a controversial test because the normal range overlaps with the abnormal, so "high" PSAs can lead to such fun as transrectal ultrasounds or biopsies of the prostate which turn out to be normal. As of 1996 the evidence was that the PSA lead to detection of some prostate cancers (many of which were slow growing) leading to therapies that decrease quality of life (ask pre viagra Bob Dole) WITHOUT lengthening life because prostate cancer is often something you die with rather than die from. There is some preliminary evidence that death rates may have dropped because of the PSA detecting cancers early, but it's still hard to know whether to recommend a PSA to a guy or not at this point.
The tricks: First, in what population is the test being used? If the condition is relatively common and the test relatively accurate, most tests will be accurate. If the condition is rare most of the tests will be bogus, like in the above example where if you test "positive" for the condition there's a 98% chance you don't have it!
Second, is the treatment benign? Chlamydia is common among young sexually active people and the test is simple and harmless, and the treatment is well tolerated and efective, and the condition while often silent can cause serious problems. So screening makes sense. Then of course there's the test. We could all have surgeries to look for cancer but that'd be dangerous and unpleasant. Taking a blood pressure each time you see the doctor is harmless however.
Third, is the information worth having? Tests should pick up diseases at a point where an intervention is useful. Screening for early cataracts isn't useful because you don't do anything about them till they noticeably bother vision anyway, so why know about it early? If a test for cancer that has already spread and is untreatable is developed, people would just hear bad news early. Maybe get some toxic chemo that doesn't turn out to help.
The simplest rule I've learned is what I call the Bickston Booger Rule after an advisor I had. Basically, it says that ordering a medical test is like picking your nose. You have to know what you're going to do with the result, and whether you really want it, before you go digging.
[This message has been edited by Ian (edited June 02, 2002).]
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Dana Sheets
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For women!
Ian -
I also appreciate your response. And I am interested in what information you have on ovarian cancer.
I'm curious about one thing. I've heard that recently, the pill may control ovarian cancer but it doubles the rate for breast cancer. Of course, I probably heard this on some evening news report that as citing one study that wanted to make the evening news.
anyway.
Perimenopause -- which for women can start as young as 40 and last until you're 60 - 65 has a whole range of things that go along with it and don't seem to be talked about until you're 55 or so -- which is sometimes too late. But these are also the women being told about HRT (hormone replacement therapies) and are being told lots of conflicting information. There are also all these new drugs out for osteopenia (sp?) that are buying ad time on TV.
I'm not a big on taking pills daily so I'm curious about how quickly these medications are being released.
And, do you have some reliable online sources you go to for GYN information? That women would be able to access???
thanks,
Dana
I also appreciate your response. And I am interested in what information you have on ovarian cancer.
I'm curious about one thing. I've heard that recently, the pill may control ovarian cancer but it doubles the rate for breast cancer. Of course, I probably heard this on some evening news report that as citing one study that wanted to make the evening news.
anyway.
Perimenopause -- which for women can start as young as 40 and last until you're 60 - 65 has a whole range of things that go along with it and don't seem to be talked about until you're 55 or so -- which is sometimes too late. But these are also the women being told about HRT (hormone replacement therapies) and are being told lots of conflicting information. There are also all these new drugs out for osteopenia (sp?) that are buying ad time on TV.
I'm not a big on taking pills daily so I'm curious about how quickly these medications are being released.
And, do you have some reliable online sources you go to for GYN information? That women would be able to access???
thanks,
Dana
For women!
Re: ovarian cancer, it's been a difficult cancer to diagnose and treat. It's not easy to spot like one on the skin. You can't easily sample from it like a cervix. You can't test for its effects easily or look for it like you can with colon cancer and blood in the stool or colonoscopy. There's no x-ray like there is for breast cancer (ultrasounds turn up cysts that are normal in most cases). And since the symptoms it causes are common to many less serious conditions, and often not present till the cancer is spread, diagnosis is often late and treatment palliative.
It is the 4th leading cancer killer of women. That said, heart disease is the number one killer of women overall, and many people don't know that lung cancer kills more women than breast, and few are as viscerally aware of the dangers of preventable and treatable colon cancers than they are of breast cancer. Ovarian cancer kills about 1% of americans. It is actually not a disease but a group of very diverse tumors ranging from harmless to quite deadly.
It commonly develops around and after menopause but can affect younger women. Risk is increased by ovulation--therefore, higher in women who gave birth late or not at all, or had menopause late, and reduced by the pill. Family history increases risk, as does being an XY female or having had a personal or family history of breast, endometrial (uterine) or colon cancer.
3/4 of victims have advanced disease at presentation. Symptoms include indigestion, bloating, feeling full, "gas" and back pain. Late signs are wasting or a belly swollen with fluid. 8/10 of women with epithelial (one variety) have detectable Ca-125, but so do women with endometriosis, PID, uterine fibroids, and a variety of other abdominal conditions. Pregnancy also elevates it.
Diagnosis is based on probability of cancer given age, exam, appearance on ultrasound, CA-125 when indicated, etc. Treatment involves surgery to remove the tumor and see if its spread, then chemotherapy. 5-40% live 5 years.
Ref: Merck Manual, 17th Ed.
"I'm curious about one thing. I've heard that recently, the pill may control ovarian cancer but it doubles the rate for breast cancer."
From Merck: "women who use oral contraceptives have a very small increase in their risk of ... breast cancer, about 5 more cases ... per 100k... primarily during the years [of use]...women who begin to use [them] before age 20 have the greatest proportional increase in the risk... although this risk is still very low"
From Harrisons (14th, 1998): risks include blood clots which can embolize to the lungs (potentially fatal), stroke, higher blood pressure, psyhoclogic changes and others. However the total deaths associated with fertility control per 100k women (1983 data) are 7-14 times LOWER with the pill than without birth control until age 40 when its about a wash. Not true in smokers--they are protective until about age 30 and worse thereafter. Other forms of birth control do have lower rates. The text goes on to say, "there is no convincing evidence that OCP use is associated with a significant increase in the incidence of cancer of the cervix, uterus, or breast" but can reduce STD risk and edometrial and ovarian cancer.
This is ust from my home library and may be out of date.
"But these are also the women being told about HRT (hormone replacement therapies) and are being told lots of conflicting information."
That's because the jury's still out. We used to think HRT reduced heart disease, then a study came out showing an initially increased then later, decreased risk. At this point most doctors I know aren't using them for that, but for osteoporosis prevention and symptom control.
"And, do you have some reliable online sources you go to for GYN information? That women would be able to access?"
Try: http://www.home.caregroup.org/
click on women's health issues under health links. This is my hospital's site. You might notice it's not as rigorous as you might like, for example, the section of benefits of HRT just says they might help with heart disease without going into the controversy over whether or not this is the case. There's also a women's health link on the bottom right.
It is the 4th leading cancer killer of women. That said, heart disease is the number one killer of women overall, and many people don't know that lung cancer kills more women than breast, and few are as viscerally aware of the dangers of preventable and treatable colon cancers than they are of breast cancer. Ovarian cancer kills about 1% of americans. It is actually not a disease but a group of very diverse tumors ranging from harmless to quite deadly.
It commonly develops around and after menopause but can affect younger women. Risk is increased by ovulation--therefore, higher in women who gave birth late or not at all, or had menopause late, and reduced by the pill. Family history increases risk, as does being an XY female or having had a personal or family history of breast, endometrial (uterine) or colon cancer.
3/4 of victims have advanced disease at presentation. Symptoms include indigestion, bloating, feeling full, "gas" and back pain. Late signs are wasting or a belly swollen with fluid. 8/10 of women with epithelial (one variety) have detectable Ca-125, but so do women with endometriosis, PID, uterine fibroids, and a variety of other abdominal conditions. Pregnancy also elevates it.
Diagnosis is based on probability of cancer given age, exam, appearance on ultrasound, CA-125 when indicated, etc. Treatment involves surgery to remove the tumor and see if its spread, then chemotherapy. 5-40% live 5 years.
Ref: Merck Manual, 17th Ed.
"I'm curious about one thing. I've heard that recently, the pill may control ovarian cancer but it doubles the rate for breast cancer."
From Merck: "women who use oral contraceptives have a very small increase in their risk of ... breast cancer, about 5 more cases ... per 100k... primarily during the years [of use]...women who begin to use [them] before age 20 have the greatest proportional increase in the risk... although this risk is still very low"
From Harrisons (14th, 1998): risks include blood clots which can embolize to the lungs (potentially fatal), stroke, higher blood pressure, psyhoclogic changes and others. However the total deaths associated with fertility control per 100k women (1983 data) are 7-14 times LOWER with the pill than without birth control until age 40 when its about a wash. Not true in smokers--they are protective until about age 30 and worse thereafter. Other forms of birth control do have lower rates. The text goes on to say, "there is no convincing evidence that OCP use is associated with a significant increase in the incidence of cancer of the cervix, uterus, or breast" but can reduce STD risk and edometrial and ovarian cancer.
This is ust from my home library and may be out of date.
"But these are also the women being told about HRT (hormone replacement therapies) and are being told lots of conflicting information."
That's because the jury's still out. We used to think HRT reduced heart disease, then a study came out showing an initially increased then later, decreased risk. At this point most doctors I know aren't using them for that, but for osteoporosis prevention and symptom control.
"And, do you have some reliable online sources you go to for GYN information? That women would be able to access?"
Try: http://www.home.caregroup.org/
click on women's health issues under health links. This is my hospital's site. You might notice it's not as rigorous as you might like, for example, the section of benefits of HRT just says they might help with heart disease without going into the controversy over whether or not this is the case. There's also a women's health link on the bottom right.
