A Step Closer to Ovarian Cancer Screening?

OVARIAN CANCER AT 73

I WOULD LIKE TO SEE THE TRANSVAGINAL UNTRASOUND TEST MADE ROUTINE AFTER MENOPAUSE AND THEN THE CA-125 IF NECESSARY. I HAVE DONE YEARLY GYN EXAMS AND TWICE A YEAR WITH MY INTERNIST ALL MY LIFE. I ACTUALLY HAD ALL THE SYMPTOMS BUT NOT UNTIL THERE WAS ACTUAL PAIN DID ANYONE TAKE NOTICE. AT THAT POINT THE CA-125 WAS OVER 400 AND CYSTS IN BOTH OVARIES, OVER 7CM IN ONE AND OVER 5CM IN THE OTHER OVARY. TYPE IIA SEROUS TUMOR WITH LOW MALIGNANT POTENTIAL. I HAD A COMPLETE REMOVAL INCLUDING LYMPH NODES AND THE MALIGNANCY HAD NOT SPREAD SO I HAVE NOT REQUIRED CHEMO OR SUCH. FOLLOW-UPS AT MD ANDERSON EVERY 3 MO.MY TWO YEARS WILL BE IN AUGUST. THESE TUMORS DID NOT GROW OVERNIGHT!

I AM REALLY FORTUNATE TO HAVE SURVIVED THUS FAR AND ONLY HOPE THE CANCER WILL NOT RETURN.

screening

My Dr. has been using transvaginal ultrasound and CA125 as part of my yearly exam since I turned 40. I am now 53. Just recently the yearly ultrasound detected a thickening of the uterine wall and he consequently put me on a 10 day cycle to force a period and will follow up with another ultrasound.

It's Betsy With Final Thoughts.......

Katherine.......Thank You for your explanation. Your Article gave ALL of Us who have Lost Loved Ones HOPE as your article headline reads "A Step Closer To Ovarian Cancer Screening".

Yes I realize that the CA125 Test is not really used much as a Screening Process but rather used with Ultasound once symptoms are there or Ovarian Cancer is found. However..... since we have very few other tests that screen for Ovarian Cancer it is a step in the right direction as your article states. Once Shannah was found to have Ovarian Cancer my son researched endless hours to understand the Chemo and Theraphies and Tests. I myself am 58 years old and throught with 'my change' and I have had Ultrasounds that have found cysts and I continued with a few Ultrasounds and Additional CA125 tests to follow up. I continue with the CA125 in my Bloodwork yearly for possibly my own peace of mind. I'm having bloodwork yearly for colestrol, diabetes and thyroid anyways. I do agree that it may read wrong and other tests might be needed. I would never agree to surgery until all other options and tests have been used. However... now that the CA125 results are in my records we can compare. My numbers have only varied within a few points either way. If they were to increase dramatically it would throw up the red flag. The best thing to do is educate yourself about Ovarian Cancer and check the net for additional explanations of this simple blood test. Altho you may not consider it a Screening Test at this point it may in time become one. This is just my personal point of view after being so involved in Shannah's Cancer taking her to Madison for Doctoring, Tests and Chemo. I do Pray that someday continued research will find a Screening Test for Ovarian Cancer that we all can use but until then we need to learn the symptoms and follow up with the current testing available. I hope in my life time we find the test that will screen for Ovarian Cancer earlier rather than later. CA125 and Ultrasounds give us Hope!

Thank You for Your Time.......

Betsy from Burlington

Katherine Hobson: No, thank you for your notes. I think everyone can agree that the sooner we find a screening test that can save the lives of those now being lost to this terrible disease, the better. People are hard at work to develop other markers besides CA125 that might replace or supplement it, so I would keep an eye on that area in the future. One group that funds research into possible screening tests for ovarian cancer, as well as other cancers, is the Canary Foundation, founded by a man whose mother died of misdiagnosed ovarian cancer. www.canaryfoundation.org

Dear Betsy

I am so sorry for the huge loss of your dear Shannah. I understand the frustration and incredible grief, having spent almost three years watching my wonderful Mother die of a disease, which I knew so little of and then finding I was at risk after the genetic testing. I came to learn that other women in my family had died from ovarian cancer that was at the time considered indelicate to talk about.

I never knew about genetic testing, or the CA-125 or the ultrasound until my mother became ill! I am glad our experiences are being shared.

This disease has robbed me of the most Loving Mother and of my own hopes of having children. I will remember your loss and mine. ~ Stephanie

Follow Up to the Author of the Article

Being that your article is called "A Step Closer to Ovarian Cancer Screening" I felt you were saying that both the CA125 and/or Ultrasound might soon be the way to find Ovarian Cancer. That encouraged me to post my thoughts but I now feel you may possibly be responding to my post suggesting that a CA125 is a foolish test to ask for since you are comparing it to a Colestrol Test. Since the CA125 is not a invasive test I see no harm in taking it especially if you have symptoms. If your numbers are in normal range that's a good thing and is charted on your records. If they run high (and I understand they possibly could if you were perhaps a smoker) then different types of tests would be given and possibly you'll follow that up with second oponions as well. I have had Ultrasounds for Ovarian Cysts and some were found. I personally was told to wait since many of these cysts break away on their own. A CA125 put me a bit more at ease since that was in normal range. This happened shortly after Shannah's passing. I am wondering how much Cancer we would find if this was a test given like the colestrol test. Other than the Costs I believe we would be continueing on with our own personal study. Since I've lost a Loved One to Ovarian Cancer I personally will continue to have this test as it hurts no one. My thought is if you don't get the test then you may never know if your CA numbers are rising or not. If you have never Cared for or Lost a Loving Family Member to Ovarian Cancer then it might be hard to understand us that have but I will try to get any test that might show Ovarian Cancer. I realize the CA125 is not tell all perfect but it surely would raise eyebrows if the numbers were high enough to follow thru on additional tests to seek out the truth. We waited two months with NO Testing and we lost Shannah after a Brave Battle 18 months later. I believe a CA125 done immediately might have given us more information to possibly put up the Red Flag! I guess there are two ways to read your article. If a CA125 Blood Test is a Possible New Method of Screening for Ovarian Cancer I will still ask for it. That was part of my message earlier. Take charge of your own life and body. Sometimes we as patients know best. Asking your Dr for the Test will not hurt. I was told it was not routinely included in your bloodwork due to Insurance payments yet mine have been covered and if they are not willing to pay then I'm willing to pay for peace of mind. Thank You for Your Time.

Katherine Hobson: Thanks for commenting, and I'm truly sorry about the death of your son's fiancee. The point I was trying to make in the article and in my later comment is first, this is all preliminary. No one is suggesting that we are ready to recommend any kind of ovarian cancer screening for women in general or for postmenopausal women (the group studied in this current research). Second, the CA125 alone is pretty much off the table - this study compared the CA125 + ultrasound to ultrasound alone. It did not look at CA125 alone. The problems with having a routine CA125 test is that the vast majority of off results would be absolutely nothing, which would mean a huge amount of unnecessary follow-up testing and possibly even surgery. More importantly, it's bad at detecting early stage disease, which is the stage at which we really want to be able to catch ovarian cancer.

Clearing up CA125

This is Katherine Hobson, the author of the story. Just to clear up one point: There is a big difference between using CA125 or ultrasound to follow up on someone who already has symptoms and using either as a routine screening for women of normal risk who have no medical complaints. I know of no cancer specialist who recommends using CA125 as part of routine bloodwork; it simply doesn't work as a screening tool. It is used to follow the progression/regression of cancers that already exist, and I imagine that when symptoms are reported it's part of the workup to determine the next step, but I repeat: It is NOT something you should ask for the same way you get your cholesterol tested.

At Only 37 Years Old Our Sweet Shannah is Gone.........

My Son lost his fiance Shannah to Ovarian Cancer at the young age of 37. That was almost 5 years ago. One of Shannah's Symptoms was "showing slightly" when it was well past her monthly period but like a headache when it passes you forget you even had the headache. Shannah was at the Doctor often for other illlness and constant blood work but it never included at CA125 which is a simple blood test that could have been easily added to her list of blood workup. She always had extremely painful periods but this time the doctors did a ultrasound and found two spots from this test. The Doctors were not worried saying they were tiny ovarian cysts and let her go thru the Holidays before scheduling her for a hysterectomy two months later. IF ONLY WE WOULD HAVE KNOWN what we know today. No other tests were done and they should have been but because she was so young no one thought it could be Cancer. Surgery was two months later and when she went into surgery they found the two tiny spots were now two large tumors. She would have never put off surgery if told the risks or that it could possibly have been Cancer. Shannah always said 'Get those Ovaries Out of there" since she actually said she didn't want to get Ovarian Cancer but they just don't remove ovaries for no reason. Further testing may have changed everything including our loss. I am encouraged to hear that they are Recognizing the CA125 Blood Test as a start and also using the Ultrasound as methods of recognizing Ovarian Cancer. To all that read this please ASK YOUR DOCTOR to INCLUDE a CA125 in your yearly checkup of Bloodwork. Ever since losing Shannah I have asked for and received this test yearly when going in for my Yearly Physical and Blood Workup. Please understand that Pap Smears will NOT detect Ovarian Cancer so get your Yearly Pap Smear and a CA125 Blood Test. Also note that you are the one who knows your body and if you think something is not right go to the Doctor and do not delay! BTW the CA125 Number can be kept on your medical records and each year compared to the past year and if your peiods or bloating or strange symptoms appear before your next checkup please GO TO THE DOCTOR and follow up with your symptoms. As everyone who has dealth with Ovarian Cancer knows it is usually not detected early enough and it is found in later stages when it's very hard to fight since it moves quickly. Yes.... in the two months from the time Shannah's Ultrasound found those spots until two months later when surgery was scheduled she very possibly went from Stage One to Late Stage Three. And... to all of you who have also Lost A Loved One I Share Your Tears! I Loved this Young Lady as If She Was My Own and 5 Years Later I Am Still Crying. For every one of those Female Tests I go thru I REMEMBER SHANNAH and how Brave She Was Fighting to Live. God Bless You All!

ovarian & uterine survivor!!!

Last month marked my 6th year of being an ovarian & uterine cancer SURVIVOR!!!

Had it not been for my wonderful gynecologist & his immediate request for me to get an ultrasound & CA125 ASAP I would not be alive today. I also got wonderful advise from an ob/gyn oncologist. EVERY WOMAN needs to consult one with all of her questions????

I found out after by chemo that because my maternal grandmother had breast cancer & my paternal grandfather had prostate cancer that I was at a higher risk for ovarian. These tests should be ordered to save lives.

Ovarian cancer--early intervention is possible

When I was 26, I found myself bloated yet losing weight, and getting periods every other week. After a few months of this, it was the pregnancy rumors by nasty women at work that jolted me into taking action, as well as my auntie's concern. Aunt was a nurse at a local hospital and got both an internal medicine specialist and a gyno to look at me. They agreed that I needed immediate laproscopic exploratory surgery.

The doctors removed a 10-litre fluid-filled tumor that was attached to one ovary--which itself showed Grade 1, Stage 1 cancer. The ovary was also removed. After I recovered, I regularly got both the CA125 blood test and the ultrasounds--every three months, then twice a year, then once a year. Last year a gyno I went to only once said I no longer had to do the ultrasound. I did/do still take the blood test.

It's been 12 years since I first went into the hospital, not knowing what the doctors were going to find. I hope that by sharing my story, I can encourage more women to go to the doctor even if they fear discomfort or bad news. That my ovarian cancer was found so early is a miracle--I didn't have to suffer chemo or other treatments, and I never had much pain save for when my stitches were healing. To pay it forward, I hope that just one woman whose body seems a little "off" will get herself checked out and perhaps treated before things become worse.

And maybe, those whose loved ones have died can be comforted that their experiences, too, can help future would-be patients.

ovarian cancer

In October of 1997 I was diagnosed with ovarian cancer...stage3. By January the doctors informed me to make sure all my paper work was in order. I was healthy and strong one week and not the next. I had kept up with my physicals and led a fairly healthy life. Nothing prepares you or your family for a devastating disease like ovarian cancer. Nothing prepares you for the pain or the humbling weakness. Nothing prepares your family to have to watch all of this unfold. For one reason or another I am still here. Everyday is a gift. Everyday you know without a doubt is something special. So those of you out there that are reading this and have been diagnosed remember that the survivabilty statistics are not a deciding factor. Live everyday and keep on believing in tomorrow because sometimes tomorrow happens.