Abnormal ultrasound but normal ca125

[Emyloulou]

This is my first post on this forum and I’m hoping for a little bit of advice.

I recently had an ultrasound following a trip a&e due to severe pain. The ultrasound showed a 4cm complex cyst with its own blood supply and the sonagrapher said on the report that an urgent gynaecology referral was required. The report stated “this is a possible new cancer that requires further imaging” I also had a ca125 done which was 10.4.

Due to the normal ca125 I was told I would have an appointment in 6 weeks. I’ve managed to get this down to 3 weeks and they will do another ultrasound just before this but I feel I’m being fobbed off a bit due to the normal blood test which apparently is “reassuring”. My grandmother died from ovarian cancer and my mother has also had it. She also had a ca125 of 10 but thankfully they removed the cyst due it’s size not because they thought it was malignant.

Has anyone any suggestions as I really don’t think I’m being taken that seriously due to the normal ca125.

[CallmeMum]

Hi lovely,

Well with that information I would laugh in the Dr’s faces! There is quite clearly a history of OC in your family and also a CA125 appears to be absolute crap for a marker in your family, although I will say everyone is different so it could be a case of a marker is rubbish for one person but fantastic for another. 3 weeks is better than the 6 weeks, I don’t know if you’ll be able to get in any quicker or not but have you stressed to the receptionist on the end of the phone about your family history? You’d be surprised how many people don’t read basic information! For most people the CA125 is in normal range (goes from 0-35 anything above is abnormal) which on paper is reassuring to them but because of your family history it might be worth pestering them to see if there is a quicker appointment phone a few times I’m sure they’ll soon find one as like normal GP’s they have to have emergency appointments free! Xxx

[Emyloulou in reply to CallmeMum]

Thanks for replying.

I had to really push for the 3 week one as the consultant had put in my notes he didn’t want to see me earlier than 4 weeks after my trip to a&e. My only other option is that I have an appointment on Monday with a different hospital regarding a prolapse repair I need so my incredible gp has given me the report to take with me and see what they suggest. I’m hoping as it’s the gyne department they might take me more seriously. X

[Neona]

My ultrasound showed complex cysts and my ca 125 was 67 which is not very high. I saw the gynaeonc surgeon in 3 days. I think you should keep pushing.

[Petrolhead]

Your post reminded me of my appointment where the gynaecologist said the word reassuring. I replied - but not guaranteed. CA125 was 31. He thought fibroids and I said I was a bit too old for them.

He said op to remove cyst would be about 6 weeks wait. Don’t know what happened but had in 2 weeks. Maybe he had 2nd thoughts.

Certainly with your family history I would have thought you would have been on a 2 week referral. It is difficult to get past the specialist dictats.

Best of luck in your prolapse appointment. Hope the GP tactic has a result.

Best wishes Fay

[Emyloulou]

Thanks Fay,

I don’t think they like that I have knowledge on the subject and told them that 6 weeks was absolutely not acceptable.

Fingers crossed they agree with me on Monday x

[triplets]

Emyloulou keep pushing. I went to my gp as I had a small swelling, she took blood immediately and within 12 hours I had an ultrasound which showed an 18cm cyst. The following day she was ant me to say the CA was 12 but she wanted me to see a gynaecologist t check it out. Within two weeks I was having surgery and it was OC stage 1c. I had 6 cycles of chemo and have been all clear for the last 18 months. Just keep pushing. I would so you well. x

[Emyloulou in reply to triplets]

Thankfully mine is only 4cm but I don’t want it getting bigger.

I intend to push a lot until I get an answer one way or the other.

Thank you x

[Cropcrop]

Given your family history I think you need to have this dealt with sooner rather than later, we are not medical people but even we know that the CA125, whilst it can be a big part of the diagnostic process, isn’t always relevant as the markers vary so much from person to person, your medical team should know this especially as some people never have a high reading, mine never got above 69 and was below 35 at my original diagnosis but I had the cancer. 3 weeks is certainly better than the original 6 weeks and I hope you get answers very soon. Take care lovely and let us know how this goes ❤️Xx Jane

[Emyloulou in reply to Cropcrop]

Thanks Jane, I will be pushing it if I don’t get help on Monday x

[Yoshbosh]

I agree with the other ladies, and whenever you are greeted with comments about your CA125 being normal etc. keep reminding them of your family history. Consultants are forgetful and disregard things. Hopefully your cyst is just that - a cyst.

Good luck!

[Emyloulou in reply to Yoshbosh]

Thank you, I do remind them and hopefully it is just that and I can stop worrying xx

[lynn6156]

I think you're being fobbed off....With your family history and the fact that the radiographer suspected it could be cancer then they should be treating it as such until proved otherwise. 3 weeks is better but make sure the appointment is for gynae oncology as they have a better success rate than just a gynae doctor and I've a feeling that as they are assuming you're ok (with that ca125 result) then they may just not have referred you to oncology. You don't want another delay in the future changing to oncology. Tell them you're very concerned and maybe mutter about 'a second opinion'....you don't necessarily have to do that now but it may make them feel guilty enough to sort you out quicker.

Lynn

x

[Emyloulou in reply to lynn6156]

Thank Lynn,

It’s only my normal gyne consultant I’m seeing so not oncology however I’m going to st Mary’s in Manchester on Monday about the prolapse and I know they have gyne oncology there so I’m going to speak to them. Hopefully they can sort it for me xx

[lynn6156 in reply to Emyloulou]

I think now you have the knowledge, and other opinions, you'll get it sorted. I knew nothing when I had my first appointment - I actually laughed when they said I had a cyst (yeah well its been there off and on for 20 yrs, I'm not worried). With hindsight I should have pushed for tests years ago - maybe they would have caught this at borderline instead but I'll never know. When I asked why they were all looking concerned and gloomy faces, they said my CA 125 was 85. I had to google and thought omg!! that's more than double!! Big panic, until I came on here and found people with readings in the thousands

It's all relative isn't it - but I'm sure you'll be asking the right questions on Monday - and it might well be just a cyst but you have to give yourself the best chance don't you.

Lynn

x

[Di16]

The ca125 may have been reassuring to someone, but it is not a marker for everyone. I currently have oc, & my ca125 is usually 6 or 7, but it has been as high as 14, which is still well within normal limits. I would agree with the other ladies to press to be seen as soon as possible, not only to get any treatment needed underway, but for your own peace of mind. Waiting for tests & results is one of the most stressful things. Here's hoping for your sake that it proves not to be oc after all, but you need to know. Di

[Emyloulou in reply to Di16]

Thanks Di, I’m prepared for a fight xx

[Caroles1]

It’s however shouts loudest lovely and with your family history you need to be taken seriously.

The CA is not always a good indicator, it was for me, but not for everyone and shouldn’t be taken as a stand alone indicator.

The sooner anything untoward is detected and acted on the better the outcome, so as the ladies said, keep pushing lovely,

Let us know the outcome

Carole xx

[Emyloulou in reply to Caroles1]

I shall be shouting very loudly don’t you worry and if that doesn’t work I have a cousin who is an oncologist but in breast cancer. I have no doubt he will help me if it comes to it.

Thanks for all the encouragement from everyone. It’s made me even more determined to push to get it sorted xx

[Caroles1]

Goodo! That’s what I like to hear, you will be fine, you have a fighting spirit,

Best wishes,

Carole xx

[Lily-Anne]

I had a normal CA level and no family history but was still seen under the two week rule. I would speak to your GP as they can often get faster action

LA xx

[IrishMollyO]

I agree with everyone here. What happened to going with symptoms and scan results over CA125 results which is the mantra of most oncologists ! Your family history is another warning light . I hope there is a speedy resolution . Take care .

XXX

💚💕

[enzo14]

Dear Emyloulou,

I had a very similar experience, went to A&E with right flank pain CT found kidney stones and an enlarged right ovary blocking the right ureter.Was admitted to hospital but sent home 2 days later with absolutely no information on what the mass was on my ovary, just that I would get a follow up Gynacology appointment in the post! absolutely stunned!

I would of had to wait 6 weeks for an TVUS and nearly 3 months before a gynaecology appointment was given. Ended up going privately to Gyn Oncologist and had a diagnosis within a week. Complex cyst, central vascularised septation . I am really frustrated and concerned by the waiting times I see posted and the huge levels of anxiety that are caused, absolutely with your family history don't accept these waiting times!

I am keeping everything crossed for you. A lovely lady on this site sent me an amazing paper on Cysts if you are interested to read through it, I could send it via email x

[Emyloulou in reply to enzo14]

That would be fantastic, thank you so much.

I’m going to see what they say on Monday as it is gyne just not the right gyne but they do have oncology at st Mary’s. If that gets me nowhere I’ll be at my gps first thing Tuesday morning.

I’ll pm you my email xx

[enzo14 in reply to Emyloulou]

Its hard but please try not to worry, my cyst looked quite worrying on a scan (especially with a central highly vascularised septation) I worried so much it was extremely stressful, I know exactly how you feel. On the positive side my cyst has decreased in size and is resolving, so please be positive as even the nastier looking cysts often are completely benign! as soon as I have your email I will ping you the link, the paper is really good and hopefully will reassure you. My gyn Onc adopted a wait and see process, follow up scan 6 weeks after the first scan, as the cyst had decreased in size they did an MRI just to check and it had gone from 4cm to 1.5 cm. Seeing the consultant again this coming Thursday. Stay positive and contact me anytime x

[Trossyann]

Hi emyloulou

I had a cyst with solid area 5cm with a normal ca125 i was fast tracked in a fortnight to see a gyn /onc as i am 51 and postmenopausal. It will be 3 weeks tuesday since i had my tubes and overias removed and i am waiting for biospy results. So like all the ladies have said push or even mention i second opinion . You know your own body .

I didnt have any symptoms my cyst was found on ct scan i had for a previous op i had in January.

Good luck tracey xx

[Emyloulou in reply to Trossyann]

Thanks Tracey,

I’m 46 and premenopausal so I’m not sure which way that makes a difference.

If I get nowhere on Monday I’ll be at my gps door Tuesday morning. I have a few other health issues and he has always been amazing so I’m sure he will help xx

[Trossyann]

Your very welcome Emyloulou

I hope you get sorted and everything is fine for you ps good attitude to have xx

[Maus123]

Hi Emyloulou. Agree with others: you might want to ask your gp for referral to another hospital (ideally a cancer center of excellence, like The Royal Marsden in London) , and definitely the gyn oncology team there, under the two week rule, to have a ct or mri scan. Regardless of a low ca125 reading.

I'd move away from the current team as soon as possible.

Best of luck.. hopefully it is still harmless in the end but best to get real experts on the case. Maus

[Emyloulou in reply to Maus123]

Thank you, I’m at st Mary’s in Manchester today for a Gyne appointment that was already arranged. I’ve bought the scan report with me so I’m going to see what they say. If not I’ll be speaking to my gp tomorrow xx

[janmark43]

Are you in the UK if so you are eligible for the two week fast track the moment there are any suspicions. I happened to mention to my GP I felt bloated, ultrasound scan at my surgery then referred to gynaecologist on two week fast track. Diagnosed stage 4, two years later doing fine but my ca 125 has always been in normal range so may be no indicator whatsoever. Good luck and don't be afraid to ask for second opinion from another hospital.

[Emyloulou in reply to janmark43]

Thank you, If I get nowhere today I will be at my gps door tomorrow

I’m glad your doing well xx

[Emyloulou]

Thank you to everyone who replied to me, I really appreciate your support.

At my Gyne prolapse appointment today the consultant was not amused with how I’d been treated and has officially put me on the 2ww pathway at St Mary’s. I’m just waiting for the call to go now and hopefully get things sorted xx

[janmark43 in reply to Emyloulou]

Result! Good luck. You may be assigned a Macmillan nurse specialist - they are great as a first port of call for advice, sympathy or to sort out any problems at the hospital.

[Emyloulou in reply to janmark43]

Thank you, I praying it’s just a cyst but I’m assuming they’ll take it out either way to find that out. Just waiting for the phone call now xx

[enzo14]

Hope everything is ok and keep us updated x

[Emyloulou in reply to enzo14]

Hi,

I’ve had my appointment with gyne oncology and they did extra bloods. I also went for an mri yesterday so now I’m just waiting for results. Not very patiently I might add xx