Complex ovarian cyst raises CA125

[Mixmum02]

Hi - I’ve just joined today and I am literally freaking out with severe panic attacks. On Tuesday I went into the GP with a heavier than normal period feeling slightly concerned. They took some blood and my CA125 was raised at 45 (normal range is between 0-35). As if that didn’t freak me out, the GP now put me on a 2 week referral for suspicion of cancer. I was so desperate for some reassurance that I booked a private ultrasound and the person who scanned me said she found 2 cysts - one was an endometrioma which I had before the birth of my 2nd child and the other was labelled as a multiloculor complex cyst with vascularity. I’ve been referred to have an MRI which I’m doing today. But I’m literally going out of my mind with worry - I’ve got 2 small kids - one 4 and the other 1 and I’m so scared that I’m not going to be here to watch them grow up. I know I may be jumping to conclusions but I’ve dealt with medical issues my entire life - long life sufferer of endometriosis. Both my kids were IVF pregnancies and I fought so hard to have them :(:(
any similar experiences? I just can’t stop crying!

Help!

Hi, I’m just typing this quickly so hope it makes sense! I’ve recently been through something similar - cysts picked up on a CT scan that I was having for something else. Followed by ultrasounds, that showed a similar complex cyst, then blood tests, 2 week referral for gyn appt and MRI.

I was told that CA125 can be raised by endometriosis and, if it was cancer, it would be in the hundreds (not that this would be a definitive diagnosis of cancer either because, as mentioned, other factors can make this increase too).

I was understandably terrified. Especially as I got a midnight text informing me of my gynae appt a few days later! I had my gynae and all good! No need for MRI and I would just have another scan in 3 months. I’m in peri and still have periods so these things can come and go. The gyn took me off the 2ww and said that they just do this so you are not waiting months for appts.

I hope this puts your mind at rest a little. It’s very unlikely to be anything sinister but I know how stressful this is and I’m sending you positive thoughts.

@poohsticks13 thank you so much for posting this - you have no idea how reassuring this is. Keep thinking I’m going to die and leave my little ones. It’s all very morbid. Had my MRI this afternoon so will see what my gyni says on Tuesday and the results come back with. Please keep everything crossed for me xx

@poohsticks13 do you mind me asking whether you had any symptoms? I’ve had a bloated tummy and some pelvic pain over the last few months but I suppose that could be because of the cyst

Urgh! Just typed a message and lost it all! No problem at all, I know how stressful it is. I have a 10 year old daughter and all I could think about was her growing up without me. I couldn’t sleep or eat properly because of the anxiety.

I had/have heavy periods with clots, some rectal issues, pelvic pain and occasional bloating. Everything that you have described can be caused by cysts - but of course, our minds always drift to the worst case scenario.

if you have Facebook, I found the ovarian cyst support group to be very helpful - just reading the stories of others took away some of my anxiety. I hope you can manage to enjoy some of the weekend and I’ll be thinking of you, with everything crossed x

@poohsticks13 thank you! I haven’t eaten or slept much either. Can you share that Facebook group? Really appreciate your kind words, they really have helped so much xx

It’s this one - it’s a private group so you’ll need to request to join but I definitely recommend it.

I’m glad I’ve helped 😊

More than you know! Thank you and best of luck with everything

I hope today has/is going well @Mixmum02 and that you have good news.

@poohsticks13 - thanks so much for your concern. I had my MRI results back and just spoke to my gyni and he thinks there’s absolutely nothing to be concerned about and the chance of cancer is extremely unlikely. I will go into surgery though to clean up my pelvic area as my endometriosis is pretty bad, so they said they would biopsy it all the same. Hopefully that comes back normal and I can move on with my life. How are you?

Hi Mixmum. I got a large ovarian cyst, also after IVF (it seems quite common, from a brief Google). Mine also gave me slightly raised CA125 and I was put on the 2ww for referral. Obviously I was worried, but it was just due to endometriosis. I was monitored regularly for 2 years and it didn't change, so I was discharged; as far as I know it's still there, unchanged. Hope all is OK for you.

Ah I’m so glad your gyn appt was positive - I hope that has reassured you a bit. Sorry to hear about the endo but hopefully they can now sort it out/everything comes back clear and you can get on with your life.

I’m good thanks - all I can do is wait til my next ultrasound but I feel ok about it 😊

@poohsticks13 I just find it really strange that so many people have been worried about cancer and then within 5 mins of speaking to my gyni he’s not concerned in the slightest. I’m guessing similar to yours - if they were concerned, they would never suggest waiting and rescanning. Almost feels like they should be the first step in the process rather than one of the last xx

I agree @Mixmum02, my situ was that I had an accident and ended up in hospital. I was told a CT had a picked up a ‘mass’ and I needed blood tests and an ultrasound and MRI asap. There was a definite feeling of urgency and it was scary.

During my outpatient appt, it was like she was talking about a different person. I was so relieved that I didn’t ask any questions but I will next time.

My conclusion (in a nice way) is that the other professionals were not specialists in that area and so didn’t really know what they were talking about….including GPs.

But, yes, everything got done quickly but the stress was immense.

It’s good that we can share experiences and hopefully help others going through the same.

@MujeresLibres thanks for sharing your story, that’s great news that it ended up being nothing and you were discharged. I’m sure you were super relieved! IVF can do some mental things to your body by the sounds of it 😂 as if we didn’t go through enough hey!!

@poohsticks13 don't get me wrong, I think the fact that they move so quickly and take a ‘better safe than sorry’ approach is totally commendable. But waiting 2 weeks for a gyni and thinking you’ve got cancer the entire time is such a frightening concept.
I was exactly the same in my appt today - I actually asked him if he checked my results properly 😂 because immediately he looked at me and said - you are fine, and 99% sure you don’t have cancer! I started crying with happiness, but also thought maybe I was going crazy for the last few days worrying.
I genuinely can’t thank you enough. When I messaged through and got a response on Saturday, I was at my lowest - thinking the darkness may never fade and it was the beginning of a long and hard battle.
thank god for women sharing experiences because that’s what gets us through xxx