Scan today which found bulky right ovary - also got raised CA levels.. HELP

[ruthietoothie]

Hi there,

After any signposting and advice, and ideally reassuring stories, but also honest thoughts too!

I'm 45 and over the past 2-3 years there's been a couple of times when I've been sent for blood tests and they've identified a raised CA level (normally around 50-60) and it's then led to me being referred for a pelvic ultrasound. Prevoiusly, I've always panicked, thinking the worst, but it's always ended up fine, and the outcome has been that maybe I just do have higher CA levels than some...

Anyway, fast forward to today and I - yet again - had a scan, but this time they found a bulging right ovary. Clearly it's grown and changed shape since my last scan (in October last year). Obviously, it's hard not to panic, and I'm hoping there is something to explain it other than ovarian cancer But now I've got an anxious wait for an MRI which I guess won't happen until next year now. So much for Xmas.

Does anyone have any thoughts or advice, or had recent experiences of anything similar?

Really just shouting this out into the void as it's left me a bit thrown, and feeling anxious, especially as a mum to four, three of whom are disabled!

Thank you for reading, and thanks in advance for any advice,
xx

Have had similar scans for ovarian cysts, last one two weeks ago, so I can understand your situation. Rest assured, that the NHS seems very hot on anything to do with ovarian/gynaecological potential cancers and will rush you onto an urgent pathway if need be. I had a post menopausal bleed and a polyp + ovarian cyst, a biopsy of the polyp came back fine, however the cyst is on the ovary rather than making it bulge a such. Did they give you any more info?

Aw thank you for replying and sorry that you’ve been through similarly anxious times. The sonographer just said that my right ovary is bigger than it was a year ago when I had my last scan. She also said that it could be an ectopic pregnancy but I did a test and it’s not that so….

trying not to think the worst or to panic but it’s always hard not to. And just feels like it’s come at an especially frustrating time of year!

worth logging onto the NHS app if you have it to see your results- if the scan was done at a hospital they should appear on there and give you more detail. As mentioned, they do take ovarian or uterine changes seriously which is reassuring.

Thank you @fluffythecat1 - frustratingly I did log onto the app and there is nothign there. I did speak to the GP and he said the scan showed a change and increased vascularity to one of my ovaries... he wasn't very reassuring. So now just a Xmas spent waiting for an urgent trip to the gynaecological cancer clinic. SOB xx

I've also had a couple of years of raised ca125 around the 60 mark. I've had 3 ultrasound scans which have found nothing but they are continuing to monitor.
One thing a gynaecologist said which was reassuring was that in ovarian cancer the ca125 goes very high and keeps climbing. When it's low or going down they don't suspect cancer.

When it's low or going down they don't suspect cancer

Im sorry but that’s not the case. There is a particular ovarian cancer called Mucinous Ovarian Cancer that can cause barely a rise in CA125 levels and plenty of women (a few of them post here) have been diagnosed with levels barley out of the upper 30’s.

Gynaecologists know their stuff but for anything gynae cancer related women have a much better outcome when in the care of a gynae oncologist

Op, I hope everything goes well for you results wise. You’re going through a horrible time of it and I wouldn’t wish it on anyone.

The good news is that if it is something untoward it has been caught early. When I had a hysteroscopy there were a lot of other women on the day ward who were having their ovaries out, so there will be lots of medical options for you. I understand that it is worrying if you have disabled children, my son is autistic. Do you have family who can support with childcare etc.

@fluffythecat1 I hadn’t seen what the Op said about her children being disabled. I have one also but he’s now a man.

Thanks everyone it’s just a scary time! And when the GP said about the increased vascularity he made it feel like it was a high risk xx

To be fair, it might be, however it sounds like they are on it, which is good. If they have been scanning frequently it means that they will have caught anything untoward early, so treatment should have positive outcomes at this stage. Also, it might not be anything untoward.

Thanks @fluffythecat1 - I'm trying the hardest I can to look for the positives but also it's a weird and scary limbo stage now while I just try and assume nothing but also can't rule out anything either. I'm never good with this kind of uncertainty but it is what it is and I know loads of you have been through it x

Been doing a bit more research and the fact they said that they saw increased vascularity on the ultrasound sounds like it's a really strong and pronounced marker that something is not right - has anyone had a more positive experience of this sort of thing being found and then it NOT being cancer? Starting to really worry now x

Do you have any other symptoms?.

"Chocolate cysts" are related to endometriosis and can appear vascular. Endo can also affect CA125 levels as this is an inflammation marker.

I sincerely hope they are using an abundance of caution here and that you go onto receive a firm diagnosis other than cancer. I wish you all the very best.

Thank you! The sonographers notes say there is a lesion on the right ovary and increased vascularity. I’ve lost weight recently but I’m on adhd meds and not been eating much due to high levels of stress. I’ve been having night sweats but I think this is peri menopause….

so anxious RN

When is your next appointment? From experience, the waiting is the hardest bit. I’m surprised the sonographer told you about findings to be honest, I was on the urgent cancer referral pathway in the summer and the sonographer only told me about a fibroid during the scan and didn’t suggest anything else. The GP was the one who told me that they wanted to do a biopsy etc.

Thanks @fluffythecat1 - sorry you’ve been through this waiting!! The sonographer results show a lesion on one ovary and increased vascularity. Because they did a scan last October (2024) they know it’s changed. Next appointment with specialists on Tuesday. I’m guessing they’ll want to do a biopsy right?

what was the outcome for you? X

Mine was OK- it was a uterine polyp which they were concerned about, so it was removed and they did a biopsy on it. They found a cyst on the ovary too which is why I’ve been having scans every 4 months, however it hasn’t changed so they want me back in a year now. I don’t know what the next steps are for an ovarian cyst that they want to investigate further. Write down any questions that you have for Tuesday, I presume that you’re seeing a gynaecologist, really great that you only have to wait until Tuesday for a further idea of what is happening. Do you have endometriosis or other gynaecological issues?
I have to say that the NHS are hugely on the ball in this area and move quickly in giving the all clear/diagnosis.

@fluffythecat1 im glad it all worked out for you but sounds like it must have been a really horrid time! I’ve no history of endometriosis or of gynaecological issues and that makes me worry that it’s all looking bad… but let’s see I guess!! X thanks for virtual support xx

Hey just wondered what happened at the appointment following the scan I had a scan and I’ve got a consultation in the next two weeks at hospital

Sorry for slow reply @Teexx91 and do hope you’re doing ok! I understand only too well what an anxious time this can be. I’ve had a gynaecology outpatients appointment and they were quite reassuring. But did want to send me for an MRI. I had that on NYE (things I’d have rather been doing then) and got a follow up appointment next week. Nervous but trying not to over think it

how are things with you? Sending strength and positive thoughts your way x