Ca125 low but worrying symptoms persist

Hi there I've posted a couple of times about my mum nos. This is another update sorry for seeming annoying.

 

My mum has visibly lost a lot of weight (1.5stone) has pelvic (both sides) pain and bloating. This raised fears of ovarian cancer. Originally the doctor put her on a normal ultrasound list as she didn't seem to worried which could be up to 6 months.

 

after me persisting and persisting and wearing myself and my mum out at the gp agreed to do a ca125 that came back at 13. So now she's back on a long waiting list for a transvaginal which may not even be looking in the right place now. The doctor is now telling her it's probably just the menopause, I keep researching and I can't see weight loss or pelvic pain as a menopause symptom?

 

we are so tired of asking them and my mum feels like they think she's crazy. I don't know where we go from here? Could it really just be the menopause? We don't have any money for private 

 

kindest regards Nina xx

  • I  am 69 and last year had left sided pain,  normal ca 125,  lost weight and bowel changes.  l was going more frequently, my GP put me on the two week referral for colonoscopy. They found  complex ovarian cysts another two week referral to gynaecology oncology. More scans ultrasound and  trans vaginal,  MRI and repeated bloods to see if they had shrunk  l was then listed for removal of cysts all very quickly and during Covid which had stopped normal surgery. 
    I was fortunate that the multiple biopsies were found to be benign

     lm surprised your Mum is not on the two week wait, as the GPS seem to like that route at the moment lve also been to breast clinic 

    Maybe your mum could see a different GP by making an appointment.  the surgery seems to release them on a Monday morning,  but going into the surgery to make it rather than phoning as my daughter did this and got the last one with her female dr of choice at 10:10. There had been a queue!  The nurse at the practice has also made me appointments to see drs face to face. 
    l hope you are able to get the help you need 

    take care 

    Susie 

     

     

  • Hi susie thank you for your reply ,

    I am glad to read you are ok now.

    can I ask we're abouts was the pain? My mums is very low behind her pelvic bones sometimes she says as low as the start of her leg! And how much weight did you loose?
     

    Before the GP thought it was an ovary problem she did a stool sample and it was normal so no further action was taken. She is on the list for transvaginal ultrasound and also an endoscopy just not the 2 week one.

    I was not aware colonoscopy shows ovarian cysts .

     

    I nag her every day to persist to them and she's saying I'm making her anxious and depressed keep going on so I feel it's a vicious cycle. She also works in her Gp surgery so she doesn't want to bother her 'bosses' and she would never ask for a 2nd opinion as she would be scared to offend them. It means she can get appointments fairly easily but when the GP doesn't take her seriously it's not much good.

    sorry for the rant

    kind regards Nina xx

  • Hi Niina1991

    In 2020 I had tummy pain and after many different examinations and tests nothing showed up, I eventually had a CA125 blood test and it came back as 51, so they arranged a a transvaginal ultrasound and a normal ultrashound, nothing showed up, I was eventually sent for an endoscopy and a colonoscopy and thney couldn't find anything either, but the doctor decided to send me for a CT scan and there it was, a mass in my pelvis and a 5.4cm tumour in the mesenteric area of my small bowel, I was later diagnosed with Primary Peritioneal Cancer stage 3c, it's rare and it is only found stage 3 or 4.

    The anser is to insist your mum gets a CT scan, as ovarian and ppc are often hard to detect, and some woman don't have an elevated CA125 even though they have the disease, don't let the GP put you off, insist.

    Please let me know how you mum gets on, take care x

  • Hi my pain was halfway between my belly button and top of leg l could pinpoint the painful area,  they found the cysts because it was a CT colonoscopy they are scanning in my area. Rather than the more painful scope. I was not expecting ovarian cysts they were 6 cm and 4 cm and solid 
     I lost about 7 kilos about a stone. 
    l am a retired nurse and when l worked in theatre with the breast surgeon he was great and happy to see me if needed. I had lots of infections and lumps He would see me after the operating list finished or next clinic appointment.  I would advise your mum to make an appointment with a go, or ring to see when she will get the scan they do get cancellations if she's happy to go when called. Some depts hold short notice lists. 
    susie

  • Hi susie thank you,

    your symptoms are very similar. My mum received a referral for the endoscopy yesterday for 11th November but still no word on the transvaginal ultrasound, would that show cysts? She is going to call on Monday to see if they have any information on how long it will be and to ask about cancellations

    kknd regarfs Nina 

  • Hi

    My cysts were checked during ultrasound, trans vaginal scan they measured to check if they were larger or had shrunk they told me during the scan that they were the same as during ct colonoscopy. They had trouble finding The overy  on the left side due to adhesions that caused the surgery to take over 4 1/2 hours everything was stuck together. No wonder it had been uncomfortable. 
    take care 

    Susie