Ovarian Cancer Support Group

I do all of the above every year + take birth control pills and aspirin.

I'd do anything I can to avoid putting my kids and neice and nephew thru that again.

Just found out today that I have an elevated CA 125 and will see a gyno. in 2 weeks, after researching this I have discovered that there are no real good tests out there. I did have a vaginal ultrasound done and found a small cyst. Originally they wanted to monitor it in 2 months but after the blood screening I'm in sooner. What should I expect for the next follow through?

I was told by my doctor that if I had the test and I do carry it then if I do develop cancer later than it would be pre existing by my insurance..is that true?

My mom passed two years ago from Ovarian Cancer. My sisters and I get our CA 125 done every year.

My mom is on her 3rd round with ovarian cancer and her sister on her 2nd...scares the hell out of me and my sister. I have been told that getting my ovaries removed will pretty much eliminate my risk-not 100% but any reduction is better than nothing!

Hi Dr. O,
First, I apologize if this sounds like a personal attack. It is not. It is a cry for help.
I lost my sister 5/20/98, to Ovarian cancer. She was only 38. She left behind a then 11 year old daughter, among the rest of us.
It took almost 2 years before she was diagnosed, despite our family history. Several pregnancy tests were done, and when her (what was 2 tumors that melded into 1 and was 3 times the size of a canteloupe) belly was growing larger and larger, ONLY her belly, she was sent to 2 eating disorders clinics. She was 5'5" tall, weighed 115. When she didn't turn up pregnant, something should have made the doctors think "Maybe, we should do a CA125, and/or an ultasound"!!!
Why don't more doctors pay attention instead of suggesting it's related to menstrual cycles, or eating disorders when ONLY the belly is getting and staying larger and very firm/hard? She had ALL the "Classic" symptoms, along with family history!!!!!!! 9 years later, that part stil infuriates me!
September is Ovarian Cancer Awareness month. Yet we get to here about Breast Cancer, something I will realistically develop in my life, YEAR round!!
Locally I am a 1 woman campaign to TRY to get the local media to address this. Since 1993, when my sister was diagnosed, I have succeeded only once, in getting a local channel to do a story. Even then, despite telling them, not only women need to be educated, but doctors need to learn how to pay more attention, they turned it into a personal story and barely mentioned anything about what women and doctors need to pay attention to, in relation to Ovarian Cancer. I just don't understand why, with this cancer being so hard to diagnose, there is not more attention publicly! As a doctor, can you explain why the majority of doctors brush off these symptoms, especially when there is a family history of Ovarian cancer AND Breast cancer?
I just don't understand why!! It makes me so angry because if they had paid attention from the start, she would realistically still be alive!!
Can you help me understand this?
By the way, I have gone through therapy, for my anger about this, as well as the nightmares I suffered as a result of being her full-time caregiver her last 3 months of life. The anger about not diagnosing her earlier, I'm told will probably haunt me the rest of my life.
As a person, NOT a doctor, have you had to tell your 11 year old niece her mother is dying? As a person, Have you had to tell your mother that one of her daughters is dying, knowing there are 2 more daughters who could go through this? No matter how much therapy I get, the images of their faces after telling thme, will forever haunt me.
I know, I sound like a lunatic. I just don't understand!

elewishs: thank you for your passionate post and I certainly dont take it as a personal attack.

1) Her symptoms should have prompted more attention..I agree with you
2) In someone like your sister who had a family history the standard of care (as mentioned above) is for an annual CA-125 and referral to a GYN-ONC doc and an ultrasound IF THE CA-125 is greater than 35
3) There are 2 large ongoing studies looking at postmenopausal women (i know this wouldnt have helped your sis) aged 55-74 and seeing IF annual CA-125 and ultrasound if its elevated...saves lives...up to to this point is HAS NOT and has RESULTED IN many unnecessary surgeries...but stay tuned...we are working on how best to screen people for ovarian cancer..and I certainly feel some of your pain having lost many dear patients to the disease
Dr O.

From my experience I have also learned that it is also important for all women and doctors to pay attend to abnormal menstral cycles. My diagnosis story is extremely unusual and I give it all to the fact that my gynocologist paid attention to my symptoms.
She was alerted by the fact that each time I saw her I had no idea when the last date of my menstral cycle. She told me to keep a detailed calendar for 3 months of my bleeding any type from spotting to heavy to nothing. It was extremley irregular and it was hard to really see unless I kept that calendar. Realizing that there had to be something wrong she had me get and internal ultrasound which revealed that I had a cyst on my ovary as well as polycystic ovarian syndrom. At first we didn't think anything of that cyst and she put me on birth control pills for three months. I then had another internal ultrasound that showed that the cyst had gotten larger. Biopsy revealed mucinous ovarian tumor that at the time was called borderline. Now the doctors call it stage 1A. I am still here today because my gynocologist paid attention. We just need to educate all gynocologists about the vage and subtile symptoms of ovarian cancer. Sadly once a woman complains of persistant abdominal bloating, discomfort, increased girth, or gastrointestinal symptoms it is in late stage. Thats how my grandmother was diagnosed. She complained of gastrointestinal symptoms and they decided it was her gall bladder and wanted to remove it. While they were removing her gall bladder they found her ovarian cancer. She died a year and a half later.
Not only do we need to education women about breast exams and annual mamograms, but also about paying attention to abnormal bleeding, and unusual abdominal or intestinal problems and notify their doctor and ask lots of questions.

Girlwhosings Im glad you posted this.
While irregular menses is an unusual symptoms of ovarian cancer it is ALWAYS something that should be mentioned as it can have many causes (thyroid disease, endometrial cancer, etc)
Dr O.

Dr. O. What is a normal reading of a CA 125?