Ovarian Cancer Screening Tests?

[concernedfriend]

Did any of you hear that the FDA recently issued a warning against the use of products marketed as ovarian cancer screening tests? A lot of people think that pap smears detect ovarian cancer (which they DON’T), but even tests like the CA-125 test, which measures proteins that are a marker for ovarian cancer, are not reliable for screening purposes (more on CA-125 here: sharecancersupport.org/new-... They often give false positive or false negatives that can cause women to undergo unnecessary and difficult treatment, or delay life-saving treatment.

The associate director of Associate Director of Gynecologic Oncology at Mount Sinai Hospital, Dr. Nimesh P. Nagarsheth, recently put out an article, too, saying that “these tests are no substitute for guidance based on a patient’s history, physical examination, clinical data collected, and judgment of her physician, or for a consultation with a gynecologic oncologist.” His whole argument is here: huffingtonpost.com/mount-si...

Have you undergone any of the ovarian cancer screening tests? Did you find them helpful? I’m curious… also wanted to remind people that pap smears don’t detect OC!

[Supernurse]

I thought something was wron and all tests came back negative My CA-125 was 57 before surgery

I had pitting edema in my lower extremities, fevers, extreme fatigue , I couldn't bend over comfortably...I felt pregnant and alway's had to sit down instead of prolonged sitting...needed panty liner pre surgery urinary frequency ...my abdomen was distended

My tumor was 15 cm

[rppizio]

I am on a mission to ask my friends to get a pelvic ultrasound every couple of years so that they can work off of a base line picture since this disease seems so difficult to detect.

My experiance was that of ' if you would just loose weight your tummy problems would go away"plus several others Like " thats what they make depends bladder pads for my bladder issues" really???. My PA and I went around for well over a year about this... so many of the symptoms mirrow IBS and other things.

I am trying hard to document comments that others have made to find corralations and more common threads of signs earlier. WE just shouldn't have to work so hard at getting some standards for screening set up for others. The sad reality is valuable time was wasted by my PA on my symptoms and this story is all to often retold as well by so many others.

Along with many other ladies I have a blog to document the ups and downs of this disease.

If you want to read the my attempts to get to the bottom of these symtoms you can find it here: reflectionsofmyworld.com/bl...

[concernedfriend in reply to rppizio]

Thank you so much for sharing this. Yes, we need screening tests so badly, and in their absence, as you say, doctors need to listen to what people say about their symptoms and their experiences. What you went through as described in your blog post must have been so difficult and frustrating! Having a baseline pelvic ultrasound might really help others.

[Terrified24-7 in reply to rppizio]

I used to joke when having pap smears that I wished there was an eject button for my reproductive organs since I was done using them. Now, after developing OC, I wish I had insisted on having everything taken out.

[Terrified24-7]

I have low grade serous cell carcinoma and my CA-125 never went above 56, even though I was stage 3b! There are other conditions that can cause elevated numbers, such as back surgery (which I had in 2014) so I am leery of the accuracy of the test. It could also just be that low grade is such a slow growing cancer that it doesn't trigger production of CA-125, I just don't know.