OC Symptoms but normal ultrasound, CT Scan, CA125

Hello. I am 50 years old. Two months ago I started feeling mild cramping in my lower abdomen and lower back daily. Then I started peeing a lot. Over the past two months the cramping has intensified to pain daily, a lot of pressure in lower abdomen/pelvic region. It's uncomfortable to snap my pants now(but not painful). The frequency of my peeing has decreased but it's still more than how often I used to go. My ultrasound, Ct scan and CA125 are normal. None of my doctors know what to do next. The scan was a pelvic and abdominal scan so stomach region was normal as well. My question is could all these tests be normal but I still have early stage of OC and it's just not able to be detected yet. Thank you.

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  • glad you posted...ask for more tests...all of them except maybe CT to reduce radiation risks... in 2/3 months and ask your GP to look at report really carefully...I was misdiagnosed at this stage. Hopefully however, it was just an urine infection now resolved!!! C x

  • Thank you. UTI ruled out. No infection. My gyn has scheduled me for another ultrasound in 2 months

  • think that's good...I never got as far as a gyn. till too late! Cx

  • I'm so sorry for you

  • thanks xx

  • Hi Gracie,

    Sorry to hear your feeling so unwell.

    As far as I was aware if you had any abnormalities in your overies then the CA125 test would have shown them.

    It seems you have had all the correct tests done. I'm sure they will get to the bottom of it.

    Of course you are also right to be wary and keep an eye on things.

    Best of luck.

    Ann Nora 🍀

  • Hi Ann Nora... the CA125 test is only a guide... it can give false positives eg higher than normal results due to other inflammatory issues etc, and also false negatives. Although only in limited number of cases and especially with some particular sub-types, it is possible to have OvCa and have a below 35 CA125. Sx

  • GracieK, Have you had a colonoscopy? endoscopy? I would definitely get those done because your symptoms are common to serious gastro intestinal diseases. That said, I had both of those, a camera inserted into my urethra, a pap smear, a transvaginal ultrasound and nothing was detected. Sadly, none of these doctors ordered a CT scan. By the time it was diagnosed in the ER I had stage 3C hi grade serous epithelial OVCA. My doc said I had had it "for years". He was angry none of the others didn't even bother to look at the outside of my organs, which is where the cancer grows. Keep advocating for yourself non stop and be sure you find a gynecological oncologist who will aggressively search for the root causes of your symptoms.

  • 2009 I had both endoscopy and colonoscopy. I have reflux and stomach ulcer but I already knew that. The soonest appt I could get with my gastro is Nov 23. So how do they look outside the organs for the cancer? What procedures? I'm sorry about your diagnosis

  • GracieK, CT scan, Pet scan. MRI. Each one of those can see things differently.

  • Okay thanks. My CT Scan was normal

  • Hi, not to alarm you but my OC was also ‘missed’ by ultrasound and internal exam. My ca125 was only 40 so not considered a worry. Eventually had an MRI which was misread but probably did show the rumour. My Oc was only diagnosed when I had a laparoscopy (camera investigation). If things really don’t feel ‘right’ for you, trust your instincts and be persistent for more investigations. I would rather have had a minor op and found it to be unnecessary if nothing found than be left for another 6 months and then find my Oc was that much more advanced. I really hope though that, as with most cases, you will prove to be cancer free.

    Good luck

    Madeline x

  • Thanks for responding. I know things aren't right and are only getting worse. I asked my gyn about insurance covering exploratory and she said yes but you have to go in with strong suspicions of a specific diagnosis and since everything (Ct scan of abdomen and pelvic region, transUS, and ca125) all normal, they could t justify going in under suspicion of OC. I have left a message for my gyn to refer me to a gyn onc. If she won't I'll just go on my own

  • What stage is yours if you don't mind saying? And what were your symptoms and did insurance pay for the laparoscopy?

  • Was diagnosed stage 2c but later thought to be stage 3 on diagnosis. Yes my insurance paid for laparoscopy. You would probably need an MRI first (?) Important to also make sure surgeon is a specialist in OC as I ended up having mine done by a uro-gynaecologist who was not a cancer specialist and got the shock of his life when he saw the tumour - it was thought to be a type of fibroid - it still beggars belief!! Please try not to get over worried by my story, chances are yours will be different and fine but I just don’t want anyone else to have to deal with delayed diagnosis.

  • Oh, my symptoms were pelvic pain and latterly ‘leaking’ hence the uro-gynae, but it was actually fluid due to the cancer not urine. I had absolutely no idea that could be a symptom, thought it was age-related bladder problems (I hope was 48)

  • Latterly leaking? I've had a clear runny discharge, no odor. That has seemed strange to me as well- I've never had this. Pelvic pain is my main symptom. I have a cyst on my ovary but now I'm questioning if they really examined it closely enough. I'm just very concerned because it continues to get worse and it's been 2 months. Thank you for responding. How are you doing?

  • Yes, I mean it came on a few months after the pelvic pain began. I also felt as if I had a bad urine infection and pressure on bladder, hence the confusion and doctor not realising it was fluid from the cancer in the Fallopian tubes.

    But cysts can sometimes get pretty large and cause a lot of pain. Have they not considered operating anyway to remove the cyst?

    Thanks, i’m Ok, I have been living with OC for over 3 years and it’s definitely been a journey with many ups and downs but I just try and do my best to get on with life!

    I hope you get somewhere soon, don’t let them fob you off. Xx

  • No I pretty much have always had that cyst on my ovary. And they say it's very tiny and it's not growing- don't seemed concerned about it. I'm now getting a colonoscopy ASAP as another GP in the practice was consulted about my symptoms and saw on my CT Scan "mucosal thickening of sigmoid colon" whatever that means. I'm googling it but most of the info is medical journal reviews which is over my head. Good for you to still be fighting after 3 years:)

  • Oh ok not the cyst then. Good luck with the colonoscopy I hope nothing serious found but possibly some explanation. Still better to be aware if there is anything. Take care, keep us posted. Xx

  • hertsmum.....how was your MRI misread. I am convinced mine was misread but gyn onc said it's gold standard so sent me away. I am in US and a resident Dr read it....an MD supposedly looked it over but the report was released with many inconsistencies and an error. I don't see how the MD even looked at it.

  • I'm losing confidence in the medical field. Originally I was lead to believe my CT scan was normal but today when another GP heard about my symptoms and read the report about mucosal thickening he said I need a colonoscopy ASAP! Have any of you heard anything about this or what it means?

  • I completely agree with those feelings. Not sure what mucosal thickening is. Did they explain anything to you?

  • Nope. The PA had limited understanding and the GP didn't come in but just said that. I googled it but still really don't understand it. But I have a call in to my gyn to send a referral to gyn onc at a major hospital within 40 miles of me, just for further testing or exploratory or something. I know things aren't right and pain in pelvic area is getting worse and pressure is always present.

  • The gyn onc I saw wanted nothing to do with me because I wasn't already diagnosed with cancer....isn't that why One goes to a gyn onc???? I believe I will be looking for one in Boston now which is 2 hours away from me. I feel the same...bloating is worse, pelvic ache constant. All the urinary and bowel issues. I already did the GI/colonoscopy route. Sigh...good luck to you! Hoping the gyn onc figures out what is going on with you.

  • Blessings to you. I hope you find out something. The "not knowing" but yet, having these symptoms is frustrating and scary because as we wait it could be growing and spreading (if in fact, that is what it is)

  • Blessings to you as well. The waiting and not knowing is very frustrating I agree. Not being listened too and being brushed off is beyond infuriating. Keep us posted and thoughts are with you.

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