Confused with complex ovarian cyst and next steps

[Scoutybob]

Hi there

Just looking for some advice. I’ve never had any period pain or issues at all (I’m 40) until a couple of years ago and then they’ve been getting progressively worse. I have extreme bloating and then I’ve had some cycles that had me doubled over screaming with pain etc. Increasingly I’ve been having issues with bloating, pressure and pain outside of period time as well.

My doctor briefly examined me, sent me for bloods inc CA125 and urgent ultrasound. My CA125 was 25 and other bloods clear. But scan seemed to show numerous issues. Right adnexa mass is 7 x 6 x 3.5 I think and was considered a likely tubo ovarian mass (sonographer got a 2nd opinion in the room) or alternatively a complex cyst. It has cystic spaces plus solid components and demonstrates vasularity. On the left ovary I have two cysts, one likely endometrioma (2.5cm ish) and a para ovarian of about the same size.

The day after the scan my doctor called. She’d spoken to the hospital and gynaecology doctor on the ward had reviewed the scan and felt it was unlikely to be an abscess and likely complex cyst so I have been referred for urgent gynaecology but my first appointment isn’t for 6 weeks and I’m in ongoing pain and feeling confused.

Would they still be considering this as potentially malignant? I’m worried about my pain along with everything but I know my ca 125 marker is low. I’m not sure if endometriomas mean there’s underlying endometriosis and the combo of this plus the chat could be creating a big mix of issues?

And what could the next steps be from here? Would a gynae consultant refer for further tests from here or be able to give more clarity and potentially refer for surgery?

Sorry I’m so confused and it feels such a long time before any answers.

Thanks in advance!

[Lucylockpocket]

All I can advise is pester!!In April 2019 I was told my cyst was not cancer , could I manage the pain with ibuprofen and it would be monitored again in 6 months, by which time it was too late and , as I’d moved counties, I didn’t have my op until Dec. I wish I’d made more of a fuss. I have a high pain threshold and put a lot of it down to menopause. I think the professionals I saw were poorly informed. Knowledge has increased since then.

Also I don’t want to be alarmist, but I have a friend in my support group whose CA125 has always been very low. (I’m on my 6th line chemo now . My CA125 has just come down over 2000 from almost 5000!!)

So, don’t sit quietly! Ovarian cancer often starts in the Fallopian tubes unseen. Mine did. My sister has had a full hysterectomy and oophorectomy and is in the clear but the tissue demonstrated pre cancerous signs. She pestered after being told her ovarian cyst would be monitored, and was armed with my histology.

Good luck. I hope you get answers sooner!

[Scoutybob in reply to Lucylockpocket]

Thank you for replying. I’m the same with the pain threshold and so I’ve been putting up with it. My husbands seen me through two labours only using a tens machine and not screaming so when I was howling the place down with pain whilst on my period he was the one that insisted I went to the doctors because it completely freaked him out.

[Fluffyjumper]

Hi Scoutybob

On the positive side - it is highly likely that your cysts are benign. However, even benign cysts can cause problems, they can grow and put pressure on bladder and other organs, twist or rupture, plus can make you feel generally uncomfortable with abdominal and back aches. Complex cysts may have greater potential to be malignant, although again, most are benign.

You need to pester to get an urgent gynaecological appointment and further tests. You are likely to have a CT scan with contrast, I also had scans of my liver and kidneys. Any referral for surgery will follow on from those tests.

I was getting no help from my GP. I was in such pain one weekend that I went to A & E. Whilst I don’t recommend this approach, it resulted in me seeing a gynaecologist the next day with scans within a week and surgery a couple of weeks later.

[Scoutybob in reply to Fluffyjumper]

Thanks so much for the response. A few people have said similar regarding a & E but it’s so difficult when you know it’s adding to the problem of why there’s such an issue. If I had pain like I did a few weeks ago, I would have to go because it was crippling and scary. I should have gone at the time but put it off.

[TeddyC]

I don’t want to alarm you, but I would pester them for a 2 week referral. I had a complex cyst with solid and cystic particles, they couldn’t see vascular involvement on mine, but it turned out to be a 20cm clear cell cancer. It was getting it’s blood supply from the back of my uterus. My CA125 was only 139 and quite often with clear cell it’s not raised at all. I also had quite a lot of pain and itchy skin and a cough, which aren’t typical symptoms, but the cough and the itch went when the tumour did.

[Scoutybob in reply to TeddyC]

Thanks Teddy. They aren’t doing a two week wait anymore which is why I’m having the wait I am. It’s down as urgent referral but I’ve had to fight even to get an appointment in 6 weeks. The other hospital was potentially 9-12 months I was told. I’m having a private appointment on Tuesday now and hoping they can tell me more.

[Doggies221 in reply to TeddyC]

Hi Teddy, how are you doing now after the CCC diagnosis? Were they able to remove the ovary unruptured? Hope you’re very well❤️

[TeddyC in reply to Doggies221]

They did remove it intact, but they did find microscopic amounts on the outside of the capsule. I couldn’t have chemo as I had a large open wound after surgery, so was expecting the worst outcome. I’ve been very lucky as I’m NED 2 years 6 months post surgery.

[TeddyC]

Pleased you have an appointment, wishing you the best of luck and I hope it’s nothing sinister.

[lesleysage]

Hello, like TeddyC, am pleased you are seeing someone early next week - fingers crosssed may not be as bad as you fear they could be.

Beside this forum, the Ovacome Support Team on freephone 0800 008 7054 can be a helpful sounding board for any options that 'swirl around' in your head!!

Warm wishes and keep being kind to yourself. xx

[SopSinger]

I'd add to the recommendation to pester. Ring the gynae department and ask to be put on a list for a cancellation. CA125 is not sufficient on its own, many women with cancer have normal CA125 readings. If you feel well enough, ring every day to remind them that you're waiting and worried. Hope the private consultation is helpful and they can get you back into the NHS faster.

[Scoutybob in reply to SopSinger]

Thank you. I asked about cancellations and I was told they don’t run them! I then asked about doing mix and match of private and nhs and they seemed really reluctant with this and said if I do this appointment as private then I risk going back further in the nhs waiting list for treatment. It all seems pretty crazy. I really hope it’s nothing but the two sonographers seemed pretty concerned. Otherwise I’ve seen a gp for 5 minutes max. I spoke of a couple of the things that had been going on, he gave a quick feel of my pelvis and then referred for ca125 and scans. That bit did happen quite fast, within two weeks I think but it’s moving it from there that seems impossible.

[SopSinger]

Your GP sounds on-the-ball. Can you go back to him and ask him to chase?

[Mariej2021]

Sorry you are having such a worrying time I would expect the next step to be CT scan with contrast which when I was being investigated would usually be ordered by gynae at the first red flag two week appt but I notice you have said earlier that appt is now 6 weeks After CT scan even if they think it is probably benign if someone in pain as you are I would be expecting you to be placed on waiting list for urgent surgery. There are some less common sneaky types of ovarian cancer which do not have a raised CA125 so it is always good to keep things moving and ultimately that means getting whatever it is removed to see what it is for certain Keep phoning gynae for a cancellation and good earlier advice 're discussing with Ovacome Helpline

[Scoutybob in reply to Mariej2021]

This is a really helpful breakdown - thank you. This makes sense to me and what I’ve thought may be the case of next steps and I do think surgery is mostly likely regardless because I’ve got strong symptoms and pain which are becoming such an issue as you say. I suppose at least if I keep it moving in the right direction with that, then that’s all I can do. It’s the timescales that seem to be the big unknown x

[Melody6]

sorry to read about your situation,Scoutybob. Your right adnexal complex cyst sounds exactly like the one I had just over 5 years ago. Mine turned out to be stage 1a OC. My ca125 was 33 before I had my first appointment with the consultant and then 55 before surgery. As the other ladies have advised- keep pestering the hospital and your GP. There was a red flag that I was not made aware of re my OC 7 months before I had surgery, however, the surgeon still removed the tumour intact. Keep pushing hospital. Wishing you the very best of luck ❤️. Mel P.s. I had a private ultrasound first, after I found out there was a problem, this showed the right adnexal mass. Got urgent referral to NHS gynaecological oncologist who ordered mri. Surgery was 5/6 weeks later. I was 47.

[Scoutybob in reply to Melody6]

Thanks so much for the reply Mel. A lot of people have mentioned similar situations so it’s definitely making me more aware and not to assume based on the CA125 x

[Melody6]

no problem at all - it is all so scary. Good luck with your appointment on Tuesday. Are you seeing a gynaecological oncologist? X

[Scoutybob in reply to Melody6]

No - I’ve got an NHS referral which isn’t until end of November. I’ve kept that appointment on but booked a private clinic and it’s a specialist gynaecologist with lots of experience in cysts and endometriosis but it’s not oncology x

[Melody6]

Definitely keep your NHS appointment. The private gynae consultant should be of some help. Mixing nhs and private can tricky. However a lot, if not all, gynaecological oncologists (they are the surgeons) do both nhs and private work. If I were you I would get a private appointment with a gynaecological oncologist - they tell you on their private hospital website which hospitals they work at. It might speed things along and get you on a surgical list quicker. ❤️

[Melody6]

p.s. the bupa website seems better for looking for this information than spire X