Postmenopausal, elevated CA125 update - My Ovacome

My Ovacome

14,706 members17,268 posts

Postmenopausal, elevated CA125 update

Kat4494 profile image
Kat4494

Hi everyone, hope things are looking positive for you this week. I'm feeling completely lost.

I spoke to the Gynaes secretary last week to find out when the scan is and she said she'd call back. She didn't so I called again today. She told me the gynae has said there will be no scan, despite my symptoms and elevated CA125 and the referral for a scan from my concerned GP. She says she will see me over a video call on June 22. Why is she so dismissive when the Ovacome nurse's advice is to keep insisting until I get an answer? I'm so confused!

27 Replies

Hi

This sounds totally absurd,why they won’t do a scan.I would get in contact with your GP again ASAP and tell them that you are not happy with this and ask if they can contact the hospital and push for a scan.Were you referred though the two week cancer pathway? Do not let this go you need answers xx

Kat4494 profile image
Kat4494 in reply to Lovedogs41

I know Lovedogs, I'm baffled. My GP is not back until Thursday and yes she told me the scan would be within 2 weeks. Maybe it's due to Covid back logs or the Gynae is 100% sure my symptoms and CA levels are not serious enough. More waiting until Thursday. Thanks for your support ❤ xxx

Don’t let it rest! Go back to the GP, don’t be fobbed off....sorry to sound harsh but you need to know. Hope everything is ok xx

Hi Kay4494, is there anyway you could afford to get a Ct scan done privately as June 22nd for a video call from your gynae is along time for you to be worrying 😕. Surely your gynae should have rang you herself to explain why she thinks you don't need a scan it doesn't seem very professional & it would only take her 5mins to put your mind at ease. I hope you get sorted soon & that all will turn out OK. As the other ladies said keep pushing till you get answers. Lots of women have had to go back to their gynae several times before they were listened to. We all know our bodies & if you feel something isn't right don't take no for an answer. Good luck & let us know how you get on X

Kat4494 profile image
Kat4494 in reply to Tulips66

Thank you Tulips66, I agree it was unprofessional. I'm new to this obviously and really can't believe that women have to keep on at their gynae to be listened to! A battle we could do without. I've been saving for a deposit as my landlord wants his son to live in my flat in the near future, so I could use that for private scan. Although that's infuriating as I've paid plenty of tax in my lifetime. Hopefully my GP can refer me elsewhere, I'll let you know how it goes. Your support is much appreciated xxx

Kat, can you ask your GP to do urgent referral to another hospital? In certain areas, like here in London we generally have a choice of hospitals when being referred . Dont wait. I had 7 week wait between diagnosis and start of treatment, I should of gone direct to oncology hospital rather than through a general hospital then having to be re:referred. Good luck.

Kat4494 profile image
Kat4494 in reply to RoseMS

Thanks Rose, I will ask my GP and also mention your possibly avoidable re-referral situation. Some great advice on here! 🤗 xxx

Hi. Just a thought that maybe push for another bloodtest with GP to see if 125 has gone up or down. Can I ask what your original symptoms were that you went to the GP with were as they should be taken in to account and presumably haven't gone away. Maybe push the symptoms coupled with the 125 results rather than just the 125 on its own . 125 notoriously unreliable on its own as there are so many anomalies that affect it. Keep pushing .

Kat4494 profile image
Kat4494 in reply to Tillymint61

Hi Tilly this was my first post with symptoms. My CA125 level has risen since then...

Hi everyone,

I've had no diagnosis yet but I'm hoping that someone can advise me on what to do. I've had a persistent pain on my left side for around 5 months now. I thought I had maybe pulled a muscle at first, but with a swollen tummy, feeling full quickly, nausea and almost daily diahorrea I went to see my GP. She took urine and blood samples. My urine showed some blood traces and high white blood cells. My CA 125 came back elevated at 59. She asked if I had family history and told me I was at higher risk of OC as my father died of colon cancer and my older brother has it just now too. I was referred for an urgent app at hospital. A month ago I had a Vaginal US and was told everything looked fine, although there would be further investigations. My GP told me 2 weeks later that they had found a small mass and they think it's a fibroid. My other Doctor said she didn't think it was a fibroid as I've not been bleeding at all apart from the urine samples. I asked to be referred for a scan but my GP said that wasn't his call, that I'm under the care of the Gyno who told me it all looked fine originally at the hospital. I was asked to provide another CA125 blood sample and should receive results this week.

If it's raised more should I go private for a scan or MRI? I've been saving for a deposit but think I'd have enough money for this. The waiting is worrying. I'd just like to have a plan in place if it is any higher.

If anyone out there has had similar symptoms I'd like very much to hear what the outcome was?

Thanks for taking the time to read this.

Sending hugs 🤗

Tillymint61 profile image
Tillymint61 in reply to Kat4494

Iam concerned that your GP hasn't asked for or done a faeces sample in view of your change in bowel habit coupled with your other symptoms. It was such a sample that escalated my investigation . I also had the symptoms you mention. It was at that stageGP then sent to a bowel consultant. and it was a bowel scan than showed up stuff on my omentum so then transfered to gynecology consultant. Diagnosed with stage 4 primary peritoneal cancer. Which comes under the umbrella of Ovarian cancer despite me having nothing on my ovaries or elsewhere in that area. First GP appointment was 29thMarch and it took until 23rd September for full diagnosis. It felt like so much longer. Treatment started on 1st November. A private scan for me would only have speeded up that part of the process. Iam sure there are ladies that may have had a speedier route to diagnosis in this group. Good luck. X

Kat4494 profile image
Kat4494 in reply to Tillymint61

Hi Tilly, March to September is long waiting on answers! My GP has taken faeces samples, they were clear, I'm waiting on results from more recent samples. Interesting it was a bowel scan that finally gave you answers. My GP was surprised to hear that when I went to the gynae app' that I wasn't given an abdominal scan as well as the Vaginal US. My gynae seems to have put a lot of faith in the VUS. Hope you're treatment is going well, thank you so much for your advice 😊 xxx

Tillymint61 profile image
Tillymint61 in reply to Kat4494

Had I have been sent to gynecologist first they wouldn't necessarily have found anything as the subsequent vaginal scan and pelvic ct scan didn't show any trace of disease. My abdomen by the time I went to GP had got to the point were it was tender on the right and across my diaphram and down the left side. However in the years previously I had gone to GP with various abdo pain so really regret not pushing for further investigations back then and it may not have been this serious. Peritoneal cancer is fairly rare and us usually secondary to ovarian which often us why it is advanced when you get a diagnosis. I now encourage anyone with your symptoms to really push for abdomen scan as it can lurk unseen with pelvis and vaginal us. Also even if all this results in everything being clear being vigilant is nessesary as anything very small doesn't show on a ct scan. Please feel free to quote my diagnosis back to the gynecologist on your call. My CA125 was 85 at the start of investigation with gynecologist and 185 on diagnosis.

Change doctors now

Ask your GP to refer you elsewhere. Gynaecologists missed my O/v cancer after a scan and said there were "no areas of concern". It took another 12 weeks to find I was stage 4 high grade (and later to be told it was inoperable). You need an oncologist or better still a gynae-oncologist x

So sorry to hear that Cumbrianlass, that's awful! I will inquire about a gynae- oncologist- thank you xxx

So sad to hear of your shocking experience. Hope you are receiving some treatment. All the best. X

Thanks for your reply. Had 18 weeks of carbo-taxol and now on a parp inhibitor called Niraparib. Another scan at the end of June to see if it is working. I do hope so! Fingers crossed for all of us ladies on here. Best wishes x

Im on Niraparib too. Seems to be doing the job so far. Been taking it for about 9 mnths

Wonderful. Hope it works for me too x

Nicky100 profile image
Nicky100 in reply to Kaitlinsmum

I am too. It’s been a wonder drug for me so far.x

It’s possible that your go could send you to a and e with an urgent referral letter for CT scan, that’s what happened to me though I had abdominal pains and I carry the brca2 gene as well as Ver raised ca125. Nevertheless it might be worth a go. If your gynaecologist is dismissive even when you’ve mentioned your worries about a possible cancer it might be a good idea to get second opinion or referred to different gynaecologist. Good luck keep pushing. Let us know how you get on. 🤗

Kat4494 profile image
Kat4494 in reply to Heart12345

Of course I'llet you know how I get on, thank you 😊 xxx

Thank you so much for your support ladies! I called Ovacome this morning and they have advised me to seek a second opinion. They have never heard of a referral being rejected in this way. I've to ask my GP to refer me to another hospital and like you all say to keep pushing until I have answers. My GP is very supportive ❤ xxx

AWESOME that you are being your own advocate and all the ladies here as well as Ovacome support have given so many wonderful responses! We ALL know how important it is to find out and to find it early. Keep muddling through and please let us all know how you get along .

How invested are you in this doctor? It sounds like they’re not very attentive.....

Kat4494 profile image
Kat4494 in reply to Leniko

Hi Leniko, thankfully my GP is very thorough, it's the gynae I need to change.

Leniko profile image
Leniko in reply to Kat4494

Yes, that’s who I meant. You deserve more responsiveness.

You may also like...