it is rarely diagnosed hence the late discovery. This is a failure of generalists for whom it doesnt exist even female docs. An ultrasound should be as common as pap smears. Also there are few trials as opposed to breast cancer. So we are victims of close minded medecine . Now there are trials for parps plus avastin or parps plus immuno but we have to know about them which is another problem. We have to become our own researchers for treatments as well as how best to survive the chemicals we live with. Interesting however to stretch our minds in new directions and to find out how strong and resourceful we can become.
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Ruebacelle
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I had an ultrasound which was all clear and 4 days later I was in A&E and I was admitted to hospital and had scans and was diagnosed with stage 4 Ovarian cancer. Nothing showed up on the ultrasound.
Wow am so sorry to hear this. I had an ultrasound and then ca125 followed by an MRI...but i had to discover and it ws already 3c. Continuing on with chemo but still have to be more involved in medical decisions than i would wish started in 2015. Best of luck to you
I completely agree with your comments, simple clues for doctors such as a patient presenting regularly with UTIs should set off alarm bells but in my case didn’t.
Also I had to get my own information on Olaparib , one of the most recent parp inhibitors and seek out a BRCA test myself, this at the time being the criteria for receiving the drug. I was positiveBRCA2 and therefore Have been taking it for 18 months.
It’s not good enough that we have to be our own advocates, I shouldn’t have been ill and having to spend my time researching and informing my oncologist on where I felt my treatment plan should travel.
Anyway good luck to everyone travelling this unenviable path, I am six years on from stage 3 diagnosis and have had 3 recurrences.
COULDN'T AGREE WITH YOU MORE. THE ONCOLOGISTS I HAVE FOUND MUST HAVE TAKEN THEIR RESIDENCIES IN APATHY OR STUPIDITY. WE DO HAVE ENOUGH TO DEAL WITH WITHOUT DOING OUR OWN RESEARCH AND INFORMING THEM.
Just happened across this post and I could not agree with you more. I am a person that enjoys researching medical articles and studies, regardless of what I might find. I just could not get a handle on why most women are still diagnosed with OC at stages 3/4. The only explanation I can come up with is, as you say, failure on the part of general gynecologists. I’m 70 and have had several gynecologists over the years. Not one has ever mentioned ovarian cancer to me. Not one had information posted in the exam room about ovarian cancer symptoms. A couple of years ago I complained of painful intercourse to my gynecologist. She sent me home with a prescription fir lidocaine gel without digging deeper. It’s hard to fight a battle to help women who might be diagnosed earlier in the future when we are battling to live ourselves, but something must be done. A poster with symptoms of OC should be posted in the exam rooms of all gynecologists and symptoms should be mentioned to patients. When I called months later to advise my gynecologist that I had to get up eleven times during the night to urinate, I was referred to a male urologist! The urologist found the mass on one of my ovaries when he did an ultrasound of my bladder. He sent me back to my female gynecologist. Women have every right to be infuriated. Now what to do? Perhaps gynecological oncologists could be prevailed upon to educate the generalists. I don’t know. 😔Sashay
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Anyone else with clear cell OC?
