Giant ovarian cyst- very worried

[martiksa]

Hi Everyone ,

Its my first time posting here but I read some posts and it seems like a very supportive community .

I am 42 and not menopausal.

I ended up in hospital due to severe pain in my right ovary . After scan I was told this was as due to a raptured cyst in my ovary and nothing to worry about , however they found a large mass in my left ovary . It’s 17cmx5x15 cm.

The USG report says it’s a simple cyst with some walls hardened .

The consultant advised there was no evidence it was cancer but I had to have an urgent MRI with contrast to exclude that due to the large size .

I had an MRI and taken blood for Tumor markers including CA-125.I have an appt with Gynaecologist on Friday to discuss the results and plan the treatment.

Initially I was quite calm and reassured by “ no evidence of cancer “ but now reading more I’m aware USG won’t show cancerous cells and I was told the size of it was unusual ..

I experienced bloating prior to it for years but I was told it was IbS.

Im very worried now as I can’t find much information about cysts of that size , so I’m wondering if any of you had that large cyst and what was the diagnosis?..

I started feeling extremely worried now and consumed by that and the waiting for an appt is stressing me out so much ..

I hope someone who had similar experience could share here ..

Thank you and lots of love

Marta

[wendydee]

I can’t answer your question, I’m afraid, but the people running the helpline at Ovacome will be able to help you. There are also factsheets and information leaflets on the website. It’s ovacome.org. I’m sure they’d be able to answer your questions. All the best to you

Wendy xx

[Fluffyjumper]

Hi Marta

I know that this is a worrying time for you. Obviously most people on this forum have a diagnosis of ovarian cancer. My cyst was over 40 x 30cm and classed as borderline. Unfortunately, it ruptured during surgery so I required further treatment ans a precaution and monitoring. Another friend has recently been diagnosed with clear cell ovarian cancer with a similarly sized cyst that ruptured, - these were both complex cysts, another friend had a cyst slightly larger than those and it was non cancerous.

I don’t think that size is indicative of cancer or not. Most ovarian cysts are benign. The fact that it is a simple cyst suggests that it is more likely to be benign.

[martiksa in reply to Fluffyjumper]

Hi Fluffyjumper,

Sorry you had to go through that.. I am glad that you recovered ,

Thank you ,it is reassuring, I am probably panicking for no reason . I struggled to find things on line about those size cysts, that it freaked me out, especially that I am quite small, 5f2 and size 6 so it feel like it fills my whole stomach.

Your message is very appreciated

Marta

[Newbery3]

Maybe you should ring for your blood results, I can only say that I had my bloods taken on a Wednesday at 3:15pm and the gp was ringing me on the Thursday morning at 11:20am to tell me I gad very high ca125 and needed a scan, so maybe if they haven't rang you yet its good news 🤞🤞 the positive to take from this is that your already going through investigations. God luck 🙏 x

[martiksa in reply to Newbery3]

Thank you Newbery! yay; s a good idea , but I am having my appt tomorrow with Gyno tomorrow so will find out...

Take care

Marta

[Hidden]

Hi,

I'm sorry you are going through this. I know how you feel as I'm going through a similar thing right now also.

I went to my GP back in July for a very weird period (heavy, prolonged bleeding with huge blood clots).

My GP organised an ultrasound scan for about a week later - it showed an ovarian cyst - 15cm x 10cm. The sonographer described it as "a sizeable, simple ovarian cyst". I wasn't too worried until my GP arranged for me to have the CA125 blood test and a gynaecology referral. The test came back normal and I thought I'd just see a Gynaecologist to get the cyst removed, but instead, I was ordered to have an MRI and 3 more blood tests, which check for cancer.

I've not received my results as yet, so can't give you any outcome unfortunately, but as soon as I do, I'll let you know.

I had an appointment booked with the gynae for 21st September, but I've noticed on my NHS app that this has been postponed until 19th October. I've not been told why this is, but it has worried me somewhat.

This is a difficult time for you and I. I never want to go through this again.

[martiksa in reply to Hidden]

Hi Jencs,

Thank you for your message. Yes, it is absolutely awful not knowing what is going on, is in it?

Sounds like we are in a similar place at the moment. I am really sorry to hear that your appt was postponed, that must be really hard.. I have been struggling waiting for the last 2 week, so I would find it extremely hard having to wait that long as you need to wait...That really sucks...

I am telling myself it is probably nothing as I was told when being referred for MRI and blood test for tutor markers, that it is just to be sure but they had no evidence it was cancer but due to the size and not being able to see it all on USG they had to do it ... So I am trying to think positive but it can be difficult at times , when all the worse case scenarios come into your head and I am sure , it probably feels like that for you as well ...

I can let you know tomorrow how my visit went if you want but I completely understand if you would rather not .

Take care

Marta

[Hidden in reply to martiksa]

Hi Marta, thanks for your reply.

Your experience sounds very much like mine. We are a similar age (I'm 40) and even the size of our cysts are roughly the same.

I was chatting to a lady on mumsnet whose cyst was much bigger than yours and mine, so I don't think it's as uncommon as they say.

I don't know about you, but I've felt a bit alone since all this testing has been going on, so it's nice to chat to someone who is in a similar situation.

I hope your appointment goes well for you tomorrow, and I'd like you to tell me how you get on, if you feel up to it anyway.

I always cling on to the fact that it's much more likely to be benign than malignant, and we've both been told that it is a simple cyst that we have. That's encouraging in itself!

I wish you all the best for tomorrow.

Jen.

[martiksa in reply to Hidden]

Hi Jen,

Yes absolutely I agree, it is encouraging...And it is good to hear other women had bigger cysts but they were benign

Yes I completely get what you saying, I have felt quite alone with it as well, so it is really nice to talk to someone who goes through the same . My partner has been supportive but they can't totally get how it feels.

I will let you know tomorrow how it went and hopefully it will also be reassuring for you

Have a good night

Marta