complex ovarian cyst waiting on ca125 results and terrified. falling apart

[Laceymay]

Hi everyone, long time reader of this forum and find it to be so comforting during stressful times. I am just looking to see if anyone has gone through something similar and had a positive outcome as I am going out of my mind at the moment.

Am 42, no kids, no history of any gynae issues at all. Have had lower left stomach pain since early October. Ended up in A and E last week. CT with contrast showed complex cystic mass near one ovary and small lesion on the other. (not really worried too much about the small one)

Have had bloods done for ca125 levels on Monday and now am waiting on results and to see what the next step is. I am absolutely beside myself as I know ovarian c can be a silent killer. I have read a few of the threads here and everything on the internet but just looking for anyone that has been through this recently

thank you so much

[Sar89]

Hi love, I’m sorry you are going through this very worrying time… I get ovarian cysts myself really terrible ones but I shall recount my now 12 year old daughters experience in the hopes it will offer you comfort… she complained of right sided pain on and off for months. She would always have a poo and then it would go so I assumed she was holding it in and causing herself pain. Till one day she woke up complained of the pain and it didn’t go away, it got later in day and I found her crying on sofa so I decided to take her alder hey (Liverpool childrens hospital) I worried it was her appendix’s and so did the staff of AH then her bloods came back normal and she was going to be sent home till a consultant said he wasn’t happy to send her home like that and wanted to run further tests. She had an ultrasound then the consultant said they could see a large mass in her lower stomach they originally thought it was in her actual intestines I think obviously he prepared me for it to be cancer. My world collapsed. She then had an mri and they discovered it was actually on her ovary and had utterly destroyed her ovary and tube it was 10 inches. A monster the surgeon described it. She had surgery and was opened hip bone to hip bone. They said it was they thought a dermoid cyst which are a tumour filled with bits of random stuff like hair, teeth ect. In her case it had a small piece of half formed bowel and a knuckle bone (bizarre right) and they almost never turn cancerous. So they sent it to pathology and it turned out it had turned cancerous. However it’s a bizarre type of cancer as in it never really comes out of it’s tumour just grows and grows. So she didn’t need chemo or radiation. It was just gone. It was as far as cancers go a great cancer to have. She just had to have scans every 3 months for 2 years they are now monthly. This is when she was just turned 11. The doctors said she was spectacularly unfortunate to have developed such a large dermoid cyst at her age and for it to turn cancerous. Basically a freak of nature. So I know you are afraid but this doesn’t mean that you are going to die of ovarian cancer or that you even have it at this point. So try and keep it together and remind yourself that this terrible time isn’t spelling the end for you. There is always other answers. If you ever need to talk or anything my inbox is always open xxx

[Laceymay]

Thanks so much for you reply Sar, That sounds so scary! your poor daughter but thank god she was ok and it wasn't something life changing. You must have been absolutely up the walls.

I am actually hoping for a dermoid cyst or similar myself. It is measuring 5cm diameter so big enough. It's the not knowing that is the worst part, the being in limbo. My mind always goes to the worst place. Hopefully I will have some answers asap. I will certainly update if I do. I have read all the posts here and some people don't update the outcome of their issue so I never know if it was positive or negative! Just hoping for a a good outcome. I have read all the statistics and everything I could find about complex cysts... I wouldn't be so bothered if it was a simple one but the words on the radiology report like "mass" and "tumour" are terrifying. I will update when I know more, it might help someone x

[Sar89]

She is completely fine Lacey. Infact after it was removed she started her periods quickly after and her little boobs tripled in size I can only assume her tumour was blocking puberty or something. Fertility might be slightly reduced but only time will tell. It’s a tiny price to pay in my opinion and at her age she doesn’t care and think babies are disgusting anyway 🤣 her ultrasound report said 10 inch mass… mass is a horrid word. Her dad was with her for ultrasound as we where taking turns in hospital and he rang me gibbering in panic. I had to go to hospital to get the story myself as I couldn’t get a coherent word out of him. A complex mass can mean a few things… like a dermoid cyst. I know what you mean the limbo. It’s like being stood on the edge of a cliff waiting to pushed off. Please do update as it could be so important for someone else and also I would like to hear to outcome myself and would like to offer you support whatever the outcome is xx

[kyllikki]

Echoing Sar's very good comment that even in the worst, worst case scenario, sometimes things can be completely fine: I know someone who had a fetiform teratoma, which is one of the rare types of ovarian cancer in which a cyst can have both dermoid and other components mimicking an actual fetus. Her tumor was larger than a fist and suffice to say it had enough unusual features that she named it and it was sent to the NIH here in the USA for specimen storage. Unfortunately, they also detected cancer everywhere: in her lymph nodes, bones, brain. She was given literally 3 months to live. Fast forward... it is 4 years later and she is still here. She has had two rounds of chemo and while that has been awful, her prognosis has changed from "certain death" to "we can't explain why but it looks like you're just fine for now." Which is absolutely extraordinary. Arguably she, like Sar's poor daughter, is a terrible outlier to have even been in this position to start with -- but that's now TWO terrible outliers who have turned out just fine, that you have found in only one day's worth of replies to this post.

So take courage, and please, take all my very best wishes!!!

[WorryRaptor]

Hey Lacey, sorry to hear you're going through this. I know this feeling all too well! Check out my thread about a very similar situation. I was terrified. Got fast tracked and everything because my complex "cyst" didn't fit any of the benign shapes/sizes or behaviour. I was convinced it was ovarian c. All of the nurses talked to me like it was too. Nobody was telling me it might be benign. Then, in my follow up appointment, it just turned out to be a follicle that had collapsed on itself and simply just looked odd on my ultrasound. It had disappeared by the time they did a second ultrasound. The not knowing, and the waiting was torture, but it all turned out to be fine.

Have a read of my thread and it might help to bring you some reassurance.
:hugs:

[nomorepanic]

Hi

This is just a courtesy reply to let you know that your post was moved from its original place to a sub-forum that is more relevant to your issue.

This is nothing personal - it just enables us to keep posts about the same problems in the relevant forums so other members with any experience with the issues can find them more easily.

Please also read this post:

http://www.nomorepanic.co.uk/showthread.php?t=213239

[Scass]

Hello,

So many of us have had similar stories, I felt so alone at the time until I started talking on here. But I do remember how scared I was. I went for a scan because my periods had gone funny & id spotted every day for a month. At the scan the technician told me there was a cyst on my ovary and he was referring me to a gynaecologist. Not even straight back to my gp, but up the chain!
I had just had bloods taken and my gp ordered a ca125 from them. I was very lucky she thought to do that, as when I rung her in tears she told me she already had the results and it was within normal levels.
I was fast tracked and I stupidly looked at my dr notes online & they said suspected ovarian cancer - so I was a wreck for the 2 weeks until I met the gynaecologist. She did another scan & diagnosed me with a 4.5inch cyst which looked like it was debris filled, but also had chambers I think. She said she didn’t understand why I’d been fast tracked as it all looked fine, but She sent me for an mri anyway. It all came back fine a few weeks later. I was still a mess until I got the results, but a slightly different mess.

About a year and a half later I started having ovary pains and was rushed for a scan and it had gone! Just disappeared all by itself. I was convinced I’d need surgery.

I know the wait is horrible, but I read so much stuff (which I don’t advise) and your age is on your side. It’s very unlikely to be anything bad. Xx

[Laceymay]

Thanks all, I have read every thread on here with any mention of cyst or ca125. Unfortunately the ca125 is elevated quite a bit actually but IÂ’m trying not to freak out as I know this can be caused by various things. ItÂ’s just so hard to find any answers, am going round in circles. I have read that an elevated result doesnÂ’t necessarily equal C . I hope IÂ’m rightÂ…

[Scass]

I joined a FB group when I was going through this & there were so many elevated CA125 tests that were circumstance and not relevant.

[Laceymay]

oh that's amazing to hear, thanks so much! I think the ovary is twisting on itself because of the size of the cyst, that's what the doc said so maybe that's what's causing the elevated result. Trying to stay off google. I've read so much about this whole area in the last week I feel I could write an essay or give a presentation! my brain is actually fried

[Scass]

I mostly remember that you can’t unsee what you’ve read and it can be terrifying, so trying to stop reading is really helpful. Limit yourself to here or the nhs, don’t delve too deep because you don’t actually know what you’re looking for xx