Wednesday, February 27, 2008

THIS SHOULD NOT BE HAPPENING

A new survey of 2000 women by the National Breast and Ovarian Cancer Centre and the National Ovarian Cancer Network, shows 60 per cent wrongly believed pap tests detected ovarian cancer and 20 per cent could not name a symptom of the disease.

The Director of the National Breast and Ovarian Cancer Centre, Dr. Helen Zorbas, said the symptoms were often vague and common to many other diseases. She said about 1400 women were diagnosed with ovarian cancer each year, most of them in late stages. Ovarian cancer is the most lethal gynaecological cancer and has a five-year survival rate of 42 per cent which is less than half that of breast cancer.

Ovarian cancer symptoms include abdominal bloating, abdominal or back pain, loss of appetite or feeling full, constipation, frequent urination, unexplained weight loss or gain, indigestion or heartburn and fatigue. Most of which women have every month and soldier on through it all.

Ovarian cancer runs in my family. Both Aunts had enormous tumours removed successfully. Even though one had spent months trying to roll the lump in her stomach flat with a rolling pin.
My mother, being an identical twin, missed on this as her doctor advised her to have the ovaries removed. (She'd already had a hysterectomy due to massive infection)

I had all the symptoms and took no notice. I was lucky, I only had ovarian cysts on both ovaries, if you can call that lucky. Cysts like this can go on for a long time but they can also twist and that is pain. The type of pain that knocked me to my knees and took my breath away. It was half an hour before I could crawl to the phone to get help. I had an ultrasound which showed two enormous cysts and was booked in the next day for an exploratory op to find out if they were cancerous. 50/50 given our family history. I had a hysterectomy with everything inventoried and inspected.

When I came to, it was a relief to hear that everything was clear. I haven't forgotten what I felt as I watched that image on the ultrasound or the relief at the all clear. That's why I can't believe that all these years later, with so much information at our finger tips, that women still don't know enough about this killer. If your doctor says not to worry but you are, get a second opinion from a cancer specialist. It's worth every cent to find out for sure.

13 comments:

Brian Hughes said...

"The type of pain that knocked me to my knees and took my breath away."

Similar to gallstones (unlike the usual portrayal on television where the sufferers go 'ooh, ooh' and clutch their sides a bit). And gallstones can be equally as dangerous, despite the rumours, leading to peritinitus (or however that's spelt) and complete organ failure...as I discovered a few years ago when I found myself within a couple of hours of death. (Don't cheer!) Either way, all symptons along these lines should be sorted and checked immediately...says me who delayed getting it seen to for months, which was why I almost kicked the bucket in the first place.

"It's worth every cent to find out for sure."

Wise words, Witchy. I'm not going to argue with that.

JahTeh said...

I've had the gallstone pain and this was way past that on the Richter Scale. Fortunately I had a good doctor who was also my surgeon. The man actually knew what pain was.

Brian Hughes said...

That depends on how long you leave the gallstones without getting them seen to. Ten hours of screaming agony, smacking your head against the floor in a vain attempt to relieve the pain and then falling into virtually a coma whilst your bodily organs start to shut down one by one is extremely painful. Shouldn't have had that peanut butter on toast that morning really. Probably shouldn't have put up with the increasingly painful spasms for five or six years before I had it removed either.

Bwca said...

You two call that pain?
Sympathy, empathy and comiserations
and
I dare not wade into this pissing contest (NPI)except on my own tangental conclusion that life is surely blessed for those of us who do not wish to live.
We write "Do Not Resuscitate" on our Regal chest before dressing

River said...

Glad to hear you got the all-clear. I had a narrow escape from cervical cancer years ago. During my hysterectomy the surgeon found many more pre-cancerous lesions than expected, the only things "clean" were my ovaries and appendix. After I woke up (a full 24 hours later than expected) my doctor told me that if I'd put off the pap smear test even one more year it would have been too late. I had no symptoms telling me anything was wrong. Just like ovarian cancer I suppose. If there are no symptoms or family history many women just don't think of regular testing for it.

JahTeh said...

Fleetwood, why didn't you have the gallbladder out sooner? I was sick for a long time, through a pregnancy too but only had the one attack of pain and had no idea it was a gallbladder full of little stones. If I'd had too much of that pain I'd have done something about it. They gave me the gallstones in a big bottle and it went to son's show and tell for years.

Bwca, you've had too many escapes so you're not destined to go yet NOT UNLESS YOU TAKE MY MOTHER WITH YOU!

River, another lucky one. Even with breast cancer sometimes the lump is so small you can't feel it. The doctors carry on about diabetes and obesity but that's only because women are living long enough to get these.

Brian Hughes said...

Witchy,

I'm male, which means that the first signs of any pain whatsoever are a clear indication that I'm dying. Men have an inbuilt phobia concerning hospitals because, let's face it, once we go into one we're never going to come out again...even if it's just to visit somebody else.

The truth is I left it way, way too long and one of the gallstones decided to go walkabout, causing all sorts of horrible infections. Now, of course, I like to brag about my accomplishment of withstanding all that agony. At the time, however, it was basically a bloody stupid thing to do.

JahTeh said...

Well, I always said, "If men had the babies, we'd have died out long ago".

Middle Child said...

I had the cysts... but when they looked next time there was no cyst and no ovary either...so only one left... thats a neat way of solving the problem...

Brian Hughes said...

"If men had the babies, we'd have died out long ago".

The downside being?

JahTeh said...

Therese, you didn't wonder where it went to?

Fleetwood, the downside being women would have nobody to rule over since we would have found a way to survive.

Brian Hughes said...

Witchy,

Again...the downside being?

Maja said...

I recently got this email about ovarian cancer and a test you can have for it:

SIGNS OF OVARIAN CANCER (even in the absence of Ovaries, and no matter what age you are)

THIS IS A MUST TO READ TO THE END

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.

A few 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 "tumour marker" CA-125 BLOOD TEST, and they are treated in the same way - surgery to remove the primary tumour 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!

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 tumours 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.

A NOTE FROM AN 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 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.