← Return to Ovarian Cancer: Anyone have trouble getting diagnosed?

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My goodness yes and yes again! I was first diagnosed in 2004, during a standard hysterectomy. Leading up to this I had 5 years of vomiting, unpredictable periods, and bowel issues. I saw multiple doctors of various specialties and had ultrasounds and scans that showed oddities without diagnosis; everyone felt it was diverticulosis until a fibroid was detected and they ordered hysterectomy. Nobody would run CA125 until I was in surgery.

Took chemo and went into remission until 2022. Symptoms started to return in 2016. My CA125 was slowly rising at a steady upward tick, but still considered normal. I was still accessing gynOnc at university cancer center (with an active ovarian cancer specialty and screening program) to report concerns and requesting PET scan which I had never had. PETs were not provided, only CT and medical team continued to reject the concerns of recurrence with diagnosis of IBS.

Fortunately I moved to AZ and new doctors were concerned with rising CA125 that had finally exceeded normal, to 50. Connected with Mayo where PET was immediately ordered to discover metastasis to multiple abdominal locations, and to diaphragm where I had been reporting pain.

This is not a silent cancer, I feel the women are the ones being silenced by standard practitioners and those not highly specialized and laser focused on ovarian cancer symptoms and treatments.

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Replies to "My goodness yes and yes again! I was first diagnosed in 2004, during a standard hysterectomy...."

Well said, you truly have to be your own advocate and be persistent no matter what. My chemo and surgery was almost a year ago this month and I am a. Zejula daily to help with the recurrence. I pray every day for all of us that is on the journey of this terrible disease. 🙏🏻

I am so sorry this happened to you; your last sentence is soooo powerful. I am having my hysterectomy tomorrow and ovary removal. I have pre-cancerous atypical cells in my uterus. I will be 50 in a month. I was hesitant to have my ovaries removed, but weighed all of the risks. I am still not thrilled to lose my ovaries, but know its for the best. I was ignored by doctors for a year as well; I had backpain (lower right back, stabbing) and a lot of bloating. I too was told probably GI issues, GERD, even though I have zero symptoms of GERD.

Sending much love to you.