Ovarian cysts, raised CA125 and 2 week referral

[WorriedaboutOC]

Feeling very anxious right now, and wondering if anyone has had a similar experience with a positive outcome.

I had an ultrasound this week because of having had a couple of heavy flooding periods. Womb and everything looked fine, but incidentally they found cysts on both ovaries, and I was sent for a CA125 blood test.

I've had a call from my GP this morning to say ca125 levels are slightly raised (48) and this means that she's referring me to gynecology on the 2 week pathway.

She was v reassuring and said its still unlikely to be cancer: she went through the US report and said there was a small cyst on each ovary (1.3 x 1 cm and 2.1 x 1.6 cm). The report said one looked like a hemorragic cyst and the other either a hemorragic cyst or an endometrioma. She said nothing on the report looked suspicious, and that the cysts might resolve on their own, but that because of the raised ca125 it was an automatic referral on the 2 week cancer pathway. She said there were many benign reasons my ca125 levels might have been raised, including the fact that I was on my period when the bloods were taken.

Despite all this, I am freaking out!! I can't concentrate on anything and I'm worried sick. I want to burst into tears when I look at my children 😞

TL;DR
Has anyone had a similar experience (ovarian cysts, raised ca125 and referral) that turned out to be nothing serious?

I had pelvic ultrasound and internal ultrasound just about 3 weeks ago. I think you need to have an MRI scan to diagnose endometriosis.

Hopefully when I speak to the GP this week I’ll find out if I’m being referred to gynae or not. The radiologist said they would only do something for cysts over 3cm, my normal one was 3cm on the nose and my endometrioma are both just over 3cm. So I’m not sure what will happen!

I’ve also had about 3 blood tests in the last 2 months so they can check the CA125 at different points in my cycle 😂

Our family has lots of experience of this. The blood tests can be raised for all sorts of reasons, including the cysts, and if the scan has said cysts then it’s likely that they will recommend just to keep rescanning to check if they’re growing, causing issues etc. Our family member who did have ovarian cancer also had lots of other symptoms, the rest of us have ‘just’ had cysts of varying types. Really try not to worry, your GP is just following protocol.

Another one here who had exactly the same thing - when I got to the referral the gynae said that CA125 is a completely rubbish test for premenopausal women as normal cysts and even heavy periods can cause changed levels throughout the cycle. He said it means your ovaries are grumpy which most women's are most months! He was totally unconcerned, and all was well. Don't panic.

Chrisymascracker0, VariationsonaTheme, BringItBackBruno

Thank you all, you lovely people! I'm feeling considerably calmer now.

Just noticed this thread, I started another thread as in similar situation, Thankfully feel calmer after hearing other experiences.

Just wanted to add I had similar issues with raised ca125 and cysts and was on the two week referral path with subsequent investigations and all was fine in the end. My dr did say with ovarian cancer in her experience the ca125 were usually much higher in the hundreds. Also a repeat ca125 a few weeks later found my levels were normal. Hope you have the same and try not to worry.

Thank you, Asparename, the more stories* *likeyours I hear, the more I realise how common this is -- which is reassuring.

Sorry you're going through this too, seennothinglikeit. I'll have a look for your thread. The stories here are really helping to keep me calm.

I've got my appointment tomorrow morning and I'm bricking it!.

Went to gp 3 weeks ago with heart burn and bloating. She was concerned after feeling my stomach and said she wanted some bloods (ca125) and a scan done. I had the bloods and ultrasound scan the following week. Call from gp saying ca125 was raised at 59 and although the ultrasound scan didn't pick up anything of concern they couldn't visualise my right ovary. So she put me on the 2week wait. I don't think it helps that our gp surgery send you a link via text to a webpage for cancer research 2 week wait information sheet!.

Best of luck to you. And I'm so glad I've found this thread tonight as it's reassured me a lot x

Are they advising a ct scan next?
Reassuring that ultrascan didn't show anything sinister.
Yes I got the scary letter too, I read it before the doctor spoke to me and talked me down off the ceiling

saltrocking, I hope your appointment goes well tomorrow, and that you come away with some reasurrance. Is it with a gynae consultant? Please come back and tell us how it goes, if you can.

*reassurance

@WorriedaboutOC yeah a gynaecologist consultant x I'll defo come back and let you know what happens x

Keeping everything crossed for your appointment today, saltrockiging 🤞🤞

@WorriedaboutOC hi! It went ok phew. They did another ultrasound and found my right ovary. It looks healthy just a very small cyst on it. Had the option to have it removed but I've declined. Having a repeat ca125 in a months time x

@saltrocking Yay! That's brilliant news! You must be so relieved. Let's hope for similar outcomes for everyone on this thread waiting for investigations.

Did they say anything about the ca125 levels? Lots of posters on this thread who've been through this process have found consultants much more relaxed about slightly raised levels than GPs, so just wondering if it was mentioned.

Also, thanks for coming back and updating us 😊

@saltrocking good news it’s all ok! How big was your cyst out of interest?

@WorriedaboutOC the consultant said my ca125 levels were not high enough for him to be worried. But wanted to repeat it next month.

@Christmascracker0 he didn't say how big, he just said very small fluid filled cyst.

That's great news, am sure you can relax a bit better now xx

Mucinous Ovarian Cancer can be present with near normal CA125 results. I think mine were at about 45. I was stage 1a.

I had internal/external ultrasounds due to two sudden extreme bouts of pain during periods. They found huge endometriomas on both ovaries, then took bloods, CA125 was really absolutely ridiculously high, within days I was booked in for an MRI, at 6pm on a Sunday!! I was petrified. Made myself ill worrying. MRI showed stage 4 endometriosis - never had a symptom. 18 months on a waiting list for a hysterectomy. The worse bit - worrying! Worry when you have something to worry about! Easier said than done! Hope it’s all ok for you.

Hi I know you have had your appointment but wanted to say that when I had raised CA125 results a few years ago (two in a row, this they were about 80-100 I think) that when I finally saw the gynae he said that Ca125 is a measure of general inflammation in the abdomen. It turned out that I had unknown endometriosis and nothing more sinister (though painful… at 41).

Thanks so much soundsgreek and Popplebop! I'm still waiting for my appointment, so stories like yours are keeping me calm(ish) while I wait.

Polly, haveto say your post gave me a bit of a scare. How are you doing now? I gather (from some frantic googling) that that form of OC is pretty rare?

Worried, And reading back I can see I made a crack handed job of my post. Im so sorry and you have my heartfelt apologies.

Sorry. How am I doing? I’m 2.5 years post surgery and my chance of recurrence has gone from 60 to 10 percent. I didn’t need chemotherapy. I was in fact filleted like a fish and anything that I could do without in my tummy was removed. It’s called a staging laparotomy. Unfortunately there really isn’t a treatment for this cancer so if it does come back there’s next to nothing to be done and it’s something I just have to live with. Despite that I’m doing well and I’m happy.