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Original poster

Complex ovarian cyst

22 replies

BTMC · 26/07/2021 11:46

Hi I'm going out of my mind with worry. I've been red flagged down the 2 week gayne suspected cancer route for a complex ovarian mass.

My ca125 levels have come back at 125 and I had an MRI 2 weeks ago so consultant can get a better look at what we are dealing with, I've a telephone call with him next week for results. I have 3 kids the youngest is just 2 and I'm literally sick with worry. I spoke to my G.P that had put me on anxiety meds so that I can function as all I've done is cry thinking the worst. I have a history of ovarian cysts, I had 2 large dermoid cysts removed almost 4 years ago but my ca125 levels were always fine. I'm freaking out, has anyone any positive stories of high ca125 and cysts?
X

OP posts:
mrsrobin · 26/07/2021 13:46

I am sorry to hear you are really stressed :(
I did have a raised ca125 (sorry, I can't remember the number) - caused my an ovarian cyst - a normal, but large one that had to come out.
That ca125 test caused me severe panic and anxiety - and all for nothing. I honestly don't think I would agree to having one again. There are numerous reasons it can be raised, from what I understand.
I am sorry I probably can't help you feel much better apart from confirming my cyst was "normal" and my ca125 was raised.
I hope after speaking with your consultant you will be less worried; mine wasn't overly concerned about the raised ca125.

Original poster
BTMC · 26/07/2021 15:10

Thank you mrsrobin for the reply. I am glad to hear that you too had a higher level of ca125 and that your cyst was benign. I am beyond anxious, I literally could not sleep, eat or function. My doc gave me meds to try and ease it but it's constantly on my mind the what if it is sinister. The waiting on results is horrendous. I am thinking the worst but hoping for the best. I've realised also that Google is not my friend atm. I'm trying to stay of the Internet and have obviously failed as I've ended up here asking questions.

OP posts:
mrsrobin · 26/07/2021 15:25

I know exactly what you mean - I was the same. I did not stay off the internet either - easier said than done! Especially as I have an enquiring mind anyway! I wish you a speedy week so you can just get to speak to your consultant. Mine was the nicest man you could ever meet - I hope yours is too x

PurplePumpkinDream · 26/07/2021 19:12

@BTMC. No experience specifically of ovarian cysts but I’m often on dr google worrying myself sick about one thing or other. Like many I can’t stay off and end up panicking. So far all dr google’s predictions haven’t materialised, it’s usually been nothing or something treatable. Hope you’ll soon be reassured.

soundsgreektome · 26/07/2021 19:18

Huge ovarian cysts both sides here and high CA125 and another high marker. MRI showed no cancer. I was making myself ill, on the list for a hysterectomy now. You’re in good hands, they’re on it. My gynae is lovely too, I know it’s hard to do and easy for me to say - stop googling, try not to worry.

Original poster
BTMC · 26/07/2021 19:29

Thanks for the replys ladies, soundsgreektome what is your ca125 levels at if you don't mind me asking? At my last consultation 3 weeks ago the consultant asked if it is another benign cyst like I've had previously what do I want to happen? I told him I want everything taken out. I can't go threw this worry everytime I have a cyst. Last time I had 2 large dermoid cysts almost 4 years ago my ca levels were always fine, so this is why I'm now freaking out. I also didn't know then that a normal ca level could mean it could still be malignant. If I'd of known that I prob would of told them to take everything out then. I'm trying to keep my mind of it but it's so hard to not over think it all.
X

OP posts:
soundsgreektome · 31/07/2021 14:08

My first one was 166, the second was higher, but they didn’t tell me what it was. And there’s no real point knowing! Cysts, endometriosis and a whole load of other stuff away those figures. My gynae told me to not read into them. It’s really tough, and I was like you, google, worry, worry more. I’ve pretty much stopped now, I’m in good hands and it will get sorted. I hope you’re ok too x

Original poster
BTMC · 02/08/2021 12:46

@soundsgreektome I'm sorry your going through this aswell it's so frightening. Have you got cysts aswell? I'm getting my mri results on Thursday, hopefully I'll know more then. I'm petrified of what my consultant will tell me Sad x

OP posts:
mrsrobin · 02/08/2021 13:17

I was wondering when you will have your phone call OP, roll on Thursday and get it done xx

soundsgreektome · 02/08/2021 13:57

I have stage 4 endometriosis, my uterus and bowel are pretty much stuck together, and the endo is in my bowel too. 7cm cysts on both ovaries. I’ve no real pain anymore, just constant lower back ache, and the mini pill is helping for now. I just want it sorted, but having to wait a year. Hope everything is ok for you.

Original poster
BTMC · 03/08/2021 12:57

Thanks for the replies ladies, I just need thursday to be here so I can get answers. I don't think mine is caused by endometrios, I've had previous surgery on cysts 4 years ago and it was never mentioned. My heart is literally pounding and this is with anxiety meds. I can't stop freaking out about what I'm going to be told. Sad I have such a bad feeling that it's not going to be good.

OP posts:
Ticklemycarpets · 03/08/2021 23:03

Good luck and keep us updated. I have similar symptoms at the moment

LoveFall · 03/08/2021 23:13

Hi OP. I am so sorry you are worrying so much. I know what it is like having waited months for my surgery at the beginning of the pandemic.

I had a very large mass caught by accident. It turned out to be a rare tumour, but after much to and fro they decided it was benign and no further treatment necessary.

I had both my ovaries removed but laparoscopically. The surgery was quite easy and I was home the same day.

My CA 125 was normal but they told me not to rely on that in making decisions.

Try not to worry, it will not change anything. But I know it is hard.

All the best.

PercyPigAndMe · 03/08/2021 23:26

Gosh OP please try and calm down. East for me to say I know

Let's examine the positives here. You're clearly young as you have a young child so you're not past the menopause. You have a history of cysts. This will overwhelmingly likely be just another cyst - worse than your past ones maybe / different in presentation but still just another cyst. You're thinking ovarian cancer but this is rare in women who have not gone through the menopause. Of course it's not impossible but it would be rare so please try and repeat to yourself ' I have a history of benign cysts and this will be the same again' to try and ground yourself.

Just take each minute as it comes, Thursday will be here before you know it and the very high chances are that you'll be collapsing in a heap of relief

Original poster
BTMC · 05/08/2021 11:12

Thank you all so much for your support reading your positive stories really helped me when I was distressed. My consultant called me ref the mri results and its good news. Nothing sinister or worrying has shown. The cyst that the consultant though he saw was actually just how my right ovary now presents after surgery 4 years ago. I have a small simple cyst on my left ovary but nothing to be concerned about. I also have a small hernia where my old pelvic incision is. The consultant wants me to get my ca125 done again next week and if its still raised he will investigate further. He has said its not ovarian cancer but if still raised may be another gynaecology problem. I'm just so relieved it's not ovarian cancer. I just wanted to update this post as I know how scary and concerning it is to think the worst when something suspicious shows on a scan and high blood levels.

OP posts:
PurplePumpkinDream · 05/08/2021 11:54

@BTMC great news really pleased for you! Thanks for updating it could help others in the same situation.

soundsgreektome · 05/08/2021 12:15

Brilliant news! Sometimes I think you have to go through the worry, in a weird way, it’s setting you up to cope if there is something wrong! I’m really pleased for you! Onwards and upwards!

mrsrobin · 05/08/2021 12:22

I am really pleased for you - a huge weight off your mind :)

Original poster
BTMC · 19/08/2021 13:15

Hi just for anyone reading that may be going through the same kind of issue. I have had another ultrasound, internal and external and all was normal. I have also had the ca125 retested 6 weeks after the 1st raised level. It came back as within normal range today. The only thing I can't think of is that I've had a cyst that has burst and caused the raised levels at the time or that the 1st test was done, was on the last day of my period.
Hope this can bring some reassurance to anyone that needs some that it's not always a bad ending.

OP posts:
soundsgreektome · 19/08/2021 16:06

Very good! Bloody CA125!! Causes so much worry! So glad you are ok!

Treezan82 · 19/08/2021 16:15

Hello,I had a large, complex ovarian cyst and elevated tumour markers from blood test. Turned out to be ovarian cancer. Had the cyst, ovary and tube removed and that was that, no further treatment needed. That was 7 years ago, clean bill of health ever since and I had 2 kids after. I really feel for you as the worry is horrible but please remember it is actually really likely to all be fine in the end xxx

Treezan82 · 19/08/2021 16:16

Oh - just read the update! So pleased for you and hope the thread offers comfort to others in future.

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