Hi 

I can only comment on my recent experience. My CA125 was 141 and I have a suspected endometrioma cyst so different to your cyst. I too didn't know what to expect from gynae appointment, I was also put on 2ww to gynae and had app earlier today.

In gynae I had a biopsy of my uterus (not expected so be prepared) and sent for more bloods so be prepared for that and gynae consultant is booking me into hyseroscopy, I'm waiting for appointment for that.

The gynae consultant has not yet come forward with a plan but I guess all the results have to come back first to then work out what to do.

I hope this is of some help to you, but of course everyone's situation is different. I'm 46 and not on HRT and not going through menopause yet.

Take care

Thank you so much for replying. That's really good to know. Can I ask how they do the biopsy if you don't mind? Just so I can prepare for it. I hope it's good news for you.

They prepared me the same way as if I was having a smear, unfortunately my cervix wasn't behaving so they had to use another piece of apparatus to hold cervix in place then they put a rod thing up through cervix into uterus and clipped a small tissue sample.

I'm not going to lie to you, it was painful like a sharp pinch then period like pains but it only took a few mins and pains eased after an hour. 

It's not usual practice to do biopsy on day without pre telling you I don't think, because previously I had biopsy in hysteroscopy clinic (a few years ago) but thought I would mention it so your prepared.

Thank you. I had IVF & egg collection which is a similar process and I remember the pain so I really appreciate the heads up so I can prepare.

I had repeat CA125 yesterday. Called GP this morning. CA125 increased to 87 (was 31 last June/July, 39 in January this year). Waiting for GP callback about urgent referral to gynaecology.

Hi

Hopefully you will be seen in gynae soon. I was seen 13 days after referral. I've only had 3 CA125 done in last 2 years, mine was 31 in December 2020, 124 a few weeks ago and 141 a few weeks ago. I'm still waiting for my CA19-9 but I have hysteroscopy next Wed so hoping they will have results then.

Hopefully they will have answers for you soon

What did gynaecologists do? What's CA19-9? Sorry for the questions. Are you any closer to a diagnoses?

UPDATE 11:55am 12/05/23: GP just called and said the increase in CA125 is significant so he’s sending an urgent referral to gynaecology today on the 2 week cancer pathway so I should get a letter for an appointment in the next 2 weeks. He said they may do another scan and/or a laparoscopy to see if the cyst is cancerous
 

The CA19-9 is another blood test to look for cancer proteins. I guess if this is also high then maybe they are leaning towards a higher chance of cyst being malignant.

In gynae there was not much discussion about a treatment plan, more a conversation of them having to ascertain what's going on and what the next steps are to try and get a clearer picture to work out how they are going to deal with it.

My gynae consultant is not convinced it's an endometrioma cyst and it is complex not a simple cyst so she wants to get as much info on that first before deciding a plan. Once all the results are back from scans/biopsies/blood tests that will all go to MDT and they will decide next steps based on what they decide the cyst type most likely (cancer/benign/endometrioma etc).

Most of my gynae app was discussing the results of what has been found so far and what needs to happen next based on the results so far.

My cyst has some irregularities and has a solid mass protruding into it.

I dont know if any of that helps but your on the right track, the waiting unfortunately is the worst bit and it is a rollercoaster. I have been poked and prodded and scans and bloods etc so much over last few weeks and still no closer to diagnosis but I will get there just like you will, its just a bumpy ride in the meantime.

Thank you. I hope all goes well for you.

Hi, how are you getting on? What was your diagnosis?