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Forwarding of emails

Rabid Pit Bull with AIDS on Board, Car Sign, George Carlin
Of course, there are the chain emails that say if you don't forward them to so many people within a time limit bad things will happen like your kids will get run over by a steamroller and then eaten by dingos, and if you do forward them within the same time limit you are most certainly going to win the lottery. I hope I needn't go into detail as to why those are ridiculous.

Some chain emails, however, have the plea to forward them because it contains information that is vitally important that people know and if they maintain their ignorance, they will most certainly die a horrible death due to the disease the knowledge could prevent. I really appreciate that once, long ago, amherstbelle pointed me to, which researches the truth of these things, urban legends, and the like.

Today I received such an email from my aunt warning that every woman should insist on a certain screening test every year to detect ovarian cancer, even if they've had full hysterectomies. Below is the email. (I've removed the variable font sizes and typefaces that were in it, which is often a sign that the email is more of a rant than a true warning.)
Subject: FW: Signs of Ovarian Cancer


(Even In The Absence Of Ovaries)
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.


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.' & lt; /B>

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 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 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 tol d 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.


And here is my reply:
Please check these things before you forward them:
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 woman who originated this email has reconsidered her position and posted an update:

I really worry sometimes at the state of critical thinking in America and on the internet. People in droves believe that vaccinations cause autism, even in the face of all evidence to the contrary, and it is causing resurgences of childhood diseases that were all but eradicated. Just because a celebrity says it's true doesn't mean it is true. I read scibasedmed, which is a blog on various medical topics and it debunks a lot of what "Complementary and Alternative Medicine" (CAM) claims. Homeopathy (the practice of re-diluting a substance until there is statistically not a single molecule of the substance in the water, and claiming that the water "remembers" the substance), acupuncture, healing touch, coffee enemas, detoxification regimens, and many others are examples of implausible practices that can, in some cases cause harm. Just for example, if one takes the "alternative" to chemotherapy, and the "alternative" is nothing more than sexied-up water, it is effectively the same as refusing a proven treatment for no treatment at all. Although data is not the plural of anecdotes, if you still think that no harm could possibly come of CAM or whatever pseudo-scientific thing you might have in mind, please have a little browse through this upstart site: What's the Harm?

I try not to be confrontational, but sometimes it really gets to me how credulous humans can be, and not just the ones that you'd expect, the undereducated, for instance, but people in positions of power and people who have had more years of education than I have digits. My aunt who sent that to me is a professional person, whose husband is a lawyer and whose daughter is a judge.

Well that's enough rant. I've got work.

ETA: I've had responses that the way I handled this was condescending and terse, and in retrospect, I was perhaps a little forward and direct. It just wears me down a little that there is so much of this misinformation flying about the internet. I think it's extremely important to know the truth about these claims and where to find them. It's taken me a very long time indeed to find all of the reason- and evidence-based resources that I have, and I want to share those with people. I'm a skeptic, and I think it is important that people not take everything at face-value. Do the research; find the truth.


( 4 comments — Leave a comment )
Aug. 22nd, 2008 06:41 pm (UTC)
Oddly, I once had my foot run over by a steamroller wheel as a child. I'm pretty sure this was not as a result of my parents not forwarding a chain letter.

While this fact is absolutely true, it demonstrates quite nicely how facts can be presented in a misleading manner and that further investigation is often required, thus neatly and circuitously coming back to one of the points of your post. After all, I do not have one cartoonishly flat foot.

But damn did it hurt.
Aug. 22nd, 2008 06:53 pm (UTC)
D: I can't imagine how much so.
Aug. 22nd, 2008 08:26 pm (UTC)
Well, it wasn't connected to an actual steamroller at the time, and was pretty significantly rusted, hence the statement being pretty misleading. Also miraculously there was no bone damage to my foot. At least I don't think so, not having been taken to the doctor and all. Lacked sensitivity for a long time though.

ANYWAY. Not the point. Point IS that I agree with you on the "people should do their research" thing. :-)
Aug. 22nd, 2008 08:28 pm (UTC)
Thanks, I'm glad you replied, I was starting to worry that everyone's filtering me out. :P
( 4 comments — Leave a comment )