Ovarian Cancer: Anyone have trouble getting diagnosed?

Posted by shesmikey @shesmikey, Jun 2, 2019

Hello, I’m hoping to get some advice on how to get my Dr to run the proper tests? I’m 42 years old and am going through who knows what. It started a few months ago with irregular bleeding. Just figured hormonal changes in body. Then, had a UTI which turned into severe kidney infection which both were treated with antibiotics within just 3 weeks of each other. Right now, no infection, but am constantly nauseated, my lower back pain is a constant nag, last months period lasted over a week and this months period sent me to ER thinking I was going to bleed out. That only lasted one day. Pain and bleeding with sex, and I just feel really crummy all the time. I’ve had uterine ultra sound which came back normal. Then only thing that did not come back normal was a single 5mm nodule found on bottom right lung. No one seems to know what is wrong with me. I have been referred to OB GYN. Still waiting for referral approval.

I was diagnosed last November with stage 3c low and high grade ovarian cancer. Years of complaining got me no where! It took a cyst (that I didn’t know about) rupturing and not being able to void to have an ultrasound ordered. From there, it moved fast! I’m fortunate enough to work for a large health care system, and got in with our head of our gyn/onc department 2 days after my ultrasound. Stat bloodwork and CT scan done that same day, surgery scheduled 6 days later. Just finished my frontline chemo June 7th, and was just declared NED last week! My only regret is that I wasn’t more persistent, and that I did things the proper way. I’m a nurse, and could’ve had any one of the doctors I work with order me more test, but I think I was just hoping it was menopause (I had a uterine ablation years ago, so no menstrual changes for me)….plus, I had very vague symptoms. Weight gain, hair loss, extreme fatigue…could have been several other issues, even though I knew OC was a potential, I blew it off, as cancer hardly runs in my family, and absolutely no female cancers!

I would definitely ask for a CA125 and an ultrasound (including transvaginal). Just keep in mind, the CA125 is elevated for several other things besides cancer. Also, not every women’s CA125 is elevated, even with cancer. Unfortunately, there is no one test to detect OC, just a handful of tests together, the only definitive way is through pathology, which means surgery. Best of luck!!

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@dswiney

I was diagnosed last November with stage 3c low and high grade ovarian cancer. Years of complaining got me no where! It took a cyst (that I didn’t know about) rupturing and not being able to void to have an ultrasound ordered. From there, it moved fast! I’m fortunate enough to work for a large health care system, and got in with our head of our gyn/onc department 2 days after my ultrasound. Stat bloodwork and CT scan done that same day, surgery scheduled 6 days later. Just finished my frontline chemo June 7th, and was just declared NED last week! My only regret is that I wasn’t more persistent, and that I did things the proper way. I’m a nurse, and could’ve had any one of the doctors I work with order me more test, but I think I was just hoping it was menopause (I had a uterine ablation years ago, so no menstrual changes for me)….plus, I had very vague symptoms. Weight gain, hair loss, extreme fatigue…could have been several other issues, even though I knew OC was a potential, I blew it off, as cancer hardly runs in my family, and absolutely no female cancers!

I would definitely ask for a CA125 and an ultrasound (including transvaginal). Just keep in mind, the CA125 is elevated for several other things besides cancer. Also, not every women’s CA125 is elevated, even with cancer. Unfortunately, there is no one test to detect OC, just a handful of tests together, the only definitive way is through pathology, which means surgery. Best of luck!!

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@dswiney, welcome to Connect. What a relief to get the news of no evidence of disease (NED), especially after such a long rough path to getting diagnosed. It's so easy to look back and say what one could've, should've done and outta have known better. I think ignoring vague symptoms is something many of us do. What is your follow-up schedule?

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@colleenyoung

@dswiney, welcome to Connect. What a relief to get the news of no evidence of disease (NED), especially after such a long rough path to getting diagnosed. It's so easy to look back and say what one could've, should've done and outta have known better. I think ignoring vague symptoms is something many of us do. What is your follow-up schedule?

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Thank you! I didn’t necessarily ignore my symptoms, but 3 separate practitioners weren’t concerned…
It is such a relief to be done!! I am going to have CA125 levels drawn every three months, starting in September, when I will be 3 months post chemo! I’ll do that for 2 years, then every 4 months for 2 years, then every 6 months for a year!

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Hey!

In 2015 I was diagnosed with a rare form of ovarian cancer at 20 years old which resulted in the removal of the ovary, fallopian tube and surrounding lymph nodes, getting to that point was a fight though. I had similar symptoms with extremely irregular delayed periods, unexplained weight gain and back/abdominal pain. All I can say is you know yourself better than anyone else so keep demanding answers until you get one.

I fought for my gynea to send off my ultrasounds for a second opinion to an oncologist and once they saw the ultrasound I had surgery that week and it was confirmed cancer once removed.

Best of luck!

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