Complex cyst with septum

[Sdoc2016]

Scan today showed 6cm cyst on ovary with septum. Next stop gynae. So worried given raised ca125 as well. Anyone else have complex cyst and if so what happened next. Thanks.

[HogwartsDK]

Hey Sdoc!

I had a complex cyst and it was 16cm. My CA125 was 26 on diagnosis so not a good marker for me. I had laparoscopic surgery to remove the cyst which turned out had grade 3 cancer cells in it so further surgery removed remaining ovary, uterus, tubes and omentum (this surgery was also laparoscopic and I recovered well and fairly quickly from both surgeries). All tests on tissue from the second surgery including abdominal washings were negative so diagnosis was Stage 1 Grade 3 Adenocarcinoma of the Ovary! I had chemo too as the cells were high grade!

The period you are in now is the worst part as it involves waiting for tests and test results. Remember that the vast majority of cysts are not cancer and the fact that your CA125 is slightly elevated doesn't necessarily mean that its cancer either. Even if it is, once you have all the results and there is a plan in place you will feel better able to process what is happening. This forum is a great place to get information and wisdom at this difficult time so keep visiting and asking any questions you need to as you go through this part of the process!

All the very best!

Dx

[Sdoc2016 in reply to HogwartsDK]

Thanks d. Trying not to worry but my marker is well above 35 at 53. How are you now. Is it long since your diagnosis and surgery. I hope u are well. Thank you for your advice. X

[HogwartsDK in reply to Sdoc2016]

Hey Sdoc!

I am great! I finished Chemo at the end of March last year! Am getting back to new normal and loving life at the minute so even if its a worst case scenario there is life at the other side! I agree with Mrs A this part is the worst but try not to dwell too much on it while waiting for results etc (and yes this is a very hard task!!) you will drive yourself mad! Its never as bad as it seems when you are anxious like this and the docs will have options for you! You poor thing it sounds like you have a lot of anxious moments recently with the breast lumps and now this!

Hope everything works out ok!

Dx

[Sdoc2016 in reply to HogwartsDK]

Thanks. You know just connecting with these forums has shown me that a there is life beyond a diagnosis and many have travelled this road and further. Really great to know u are doing so well. Thanks so much and live well❤️😘

[Boot1947 in reply to Sdoc2016]

53 is not really 'well above' 35, in the scheme of things, so maybe not such a bad sign. I was 3,900 before surgery, which was a bit of a give away!! Hope all goes well for you. Deb xx

[Sdoc2016 in reply to Boot1947]

Thanks Deb. @Boot2957. Hopefully get more answers tomoro at gynae appt. How are you doing post surgery? Sx

[Boot1947 in reply to Sdoc2016]

Hi S. After the surgery and chemo, I've been NED for over two years now and my CA125 is still 14. Wishing you all the best x

[Sdoc2016 in reply to Boot1947]

Boot1947 I'm so happy to hear this wish you continued good health. Thank you for your good wishes. Sx

[Mrs_Atko]

Hi Sdoc, D has already given you a great response but I just wanted to add that it's this waiting game that is the worst (& Dr Google often doesn't help either!) CA-125 is not a definitive indicator of anything suspicious on its own (it wasn't for me) and most ovarian cysts like D has said are harmless and benign, even complex ones. So the best advice is try not to worry (easier said then done) jot down any questions you have and take these along to your gynae appointment. Once you've seen them and know what's what, you'll be overall better informed and better equipped to deal with whatever it might be...thinking of you. Jemima xx

[Sdoc2016 in reply to Mrs_Atko]

Thanks jemima. Was your ca125 raised and if so what. I assume nothing was found. I've added all up in my head and came up with C. This is my third scare. Up at breast clinic twice with lumps which turned out to be cysts so I'm praying this one is benign. Only for the damm marker I wouldn't be as worried. Thanks. Xx

[Mrs_Atko]

My CA125 was 7 but turned out my 'cyst' was a 15cm borderline mucinous tumour, stage 1a so hadnt spread. Had ovary, tube & appendix removed & omentum biopsies in Aug last year - all fertility saving as only 33 at the time. On 'wait & watch' now as scan showed a new, smaller complex looking 'cyst' on remaining ovary at the end of Nov last year, so keeping finngers crossed it's nothing to worry about. The worry is in the waiting...by try & stay positive as more often than not these things are nothing to worry about. Xx

[Sdoc2016 in reply to Mrs_Atko]

I hope u r feeling well now and that small cysts nothing to worry over. Thank you for your support and wishing you good health. Xx

[Mrs_Atko in reply to Sdoc2016]

Thank you - feel fine, just looking forward to having another scan and seeing there is nothing to worry about Good health to you too xx

[Decca4Ever]

Just having a cyst can raise your Ca125. Mine was 130 and turned out to be a Borderline, 'cured by surgery', clinically benign. It was certainly 'complex'. It was 22cm and had even grown a 'sister cyst' floating somewhere up by my midriff. As Hogwarts said, the majority of cysts are benign, so try not to get ahead of yourself, difficult though it is, I know.

Fingers crossed that all will be well.

[Sdoc2016 in reply to Decca4Ever]

@decca4ever. That's great to hear. My anxiety levels have certainly been raised this past week. I just hope that this will be the case with me. I'm sure you were petrified initially but greT to hear your cyst was benign. Did you have to wait till after surgery to know this or were they able to reassure you prior to that. Just wondering how much they will be able to tell me at gynae appt. x

[Decca4Ever in reply to Sdoc2016]

If you look on my profile, you'll see the post I wrote about how I was diagnosed. My GP referred me to my local hospital, which doesn't have a gynaeoncologist, just a gynae. She was v gloomy. But after an MRI, a CT of chest and a fine needle biopsy, I was transferred to a big teaching hospital, where my consultant, from the same scans, took a much more optimistic view. He thought it was benign before he even saw me and the day after the surgery came into the ward, rubbing his hands, and said, 'I was right!'

Yes, technically, it's the pathologist who's the expert, but I guess if the surgeon is v experienced, as mine was, they have a pretty good idea when they have a good look round in the operating theatre. Borderline is half-way between Benign, with a capital B, and o.c. It's not strictly Benign because the cells aren't quite normal, and in a few cases they can go on to become o.c. But if they stay the same, they're clinically benign because they're non-invasive, non-malignant.

If you have surgery, you really need a gynaeoncologist. Those extra years of training make a big difference. Don't be alarmed if you're referred to one. You need someone who can tell you it's not cancer, as much as if it is.

Sue

[Sdoc2016 in reply to Decca4Ever]

Thanks sue. Only just aware how to see profile. Will look soon. Xx

[Hidden]

Hi there I was diagnosed with a complex cyst which was huge and at surgery I was found to have stage 1 ovarian cancer but that was 21 years ago and after surgery and chemo I have been fine. So I wish you all the best and I know it's almost impossible not to worry but I hope you get it sorted soon. The wondering and waiting is always the worst

[Sdoc2016 in reply to Hidden]

Thanks orangery. It's fantastic to hear you have been so healthy since. Ever since wed when cyst confirmed I appear to be more aware of it. Funny how the mind works. Nervous wreck at moment at times but stories like yours give me hope. Thank you. ❤️