Any timescale guidance for high CA125?

[Emmyeve]

Just wondering if anyone knows (for a fact) if there are any timescales put in place that NHS must adhere to for a laparoscopy following high ca125? My GP advised cancer regs dictate a 2 week urgent referral for a gyny consultation but I was wondering if the same applies for a lap given that you can’t 100% rule out ovarian cancer until you actually get in there. I’m aware of how unreliable these tests are and my ultrasound and age both suggest I don’t have it. Just wondering if there are any timescales set in place for us patients.

[Nickimidge]

From a situation i’ve been in with a cancer referal, i was told i would see a consultant within 2 weeks, and from the date i was told i needed an operation a cancer referal has to be operated on within 6 weeks. However my cancer referal wasn’t gynae related so i don’t know if its different. Xx

[Hidden]

In my experience it’s two weeks for a consultation but then depending on what the gynaecologist’s view is you could wait months for a lap.

I was lucky and had my lap within one month of first being referred but at one point there was talk of waiting more than three months xxx

[Emmyeve in reply to Hidden]

Thank you. Yeh he didn’t seem worried but mainly because of my age and the fact that he ca125 can be high when there’s any inflammation in there not just from cancer. I don’t like how they assess it on age though. As if a 36 year old can’t have ovarian cancer. The sonographer has worked in gyny for years and she said there would be free flowing fluid etc and that she was certain it wasn’t that but you know how your mind focuses on the C word.

[discobec]

I had my CA125 blood test results of 187, and within 10 days was given an urgent ultrasound scan and saw a consultant less than a week later. The US scan indicated that the cysts were almost certainly endometriomas. The consultant said he's seen women with CA125 levels of up to 600, which were caused by endometriosis.

Yesterday (exactly 5 weeks since my bloods) I had surgery to remove 2 large cysts.

Best of luck to you.

[Emmyeve in reply to discobec]

So you had your op really quickly. Is that just because they had space or you were in pain or because they were concerned about your bloods? I had high ca125 years ago when I was first diagnosed with endo so I’m sure it’s just because of the endo. Thank you for responding. X

[discobec in reply to Emmyeve]

A combination really. I had a scan in August which showed that endometriomas had returned after a big surgery in November 2016. I've been in a lot of pain since early this year.

The orders for bloods came after that, but by mid October (my urgent US scan) they'd almost doubled in size, so they got me in quickly. I have a family history of ovarian cancer too.

I'm also due to start IVF so that was a factor as well. Talk about complicated! X

[Emmyeve in reply to discobec]

Oh god that sounds like I nightmare. How did it all go then? How are you now? X

[discobec in reply to Emmyeve]

I'm okay thanks. Sore and feeling a bit sorry for myself - but glad it's done and hope it's my last surgery for a long time. X

[Starfish123]

I had biopsies 15 days after seeing consultant because of ultrasound scan and bleeding, the CA125 was done the same day I originally saw the consultant but that was ok apparently.

[AliPain1]

Hi there. I'm age 36 too. I had a raised CA125 level and painful periods/stabbing pains throughout the month. I was referred under the two week referral by my GP and my gynaecologist wanted to do a lap to rule out ovarian cancer. He told me they always aim to get patients in for the lap within the month of making a decision to operate. I had the lap about three weeks after my consultant appointment. I was in a similar position to you in that the doctor didn't think it was ovarian cancer and he suspected endometriosis was the cause of the raised level but he explained that given the overlap between symptoms of endo and ovarian cancer it's safest to rule it out. If you are really concerned I would push to get the treatment to reassure you xx

[Emmyeve in reply to AliPain1]

Did you have an ultrasound? What was your outcome?

[AliPain1 in reply to Emmyeve]

Yes, Ultrasound showed I had a cyst on one of my ovaries. Although the consultant said that the cyst didn't appear concerning they had to consider the fact that my CA125 level was raised and wanted to rule out Ovarian Cancer and confirm if I had endometriosis.

It was confirmed that the cyst was an endometrioma and I had endometriosis which had stuck my ovaries to other things. They freed my ovaries and removed the endometrioma.

Post op recovery for me was fairly straightforward and tests have confirmed definitely endometriosis and not cancer of my Ovaries which was a huge relief!

Hope you get the treatment you need to reassure you and help with your symptoms xx

[Emmyeve in reply to AliPain1]

Aww thank you! I already know I have endo from a lap years ago so I guess they’re more informed and not so worried. Doesnt stop me worrying of course.

[Tillyfloss]

Hi. In my experience they are quick at getting you seen, I had surgery in September 16, my ca125 came back as 2146, which they described as alarmingly high, I was told this at 4:45 pm and had an emergency ct scan at 9am the next day ( this was the NHS). They repeated the test and had it seen by a specialist at a different hospital and decided it was being caused by the large chocolate cysts they hadn't been able to remove. They did an MRI 3 weeks later and I had 2 ultrasounds before having surgery at the bsge centre. It was all tested and came back clear, they said my readings were unusual high but it is common for endometriosis to cause it. Didn't stop me freaking out but they really did get on to it straight away. You can look up time guidelines for your hospital to give you an idea. Good luck. Xx

[Emmyeve in reply to Tillyfloss]

Oh that’s interesting. That blood test is so random and unreliable. Unless monitoring cancer treatment success. So how did you get on? Did they find many cysts during lap?

[Tillyfloss in reply to Emmyeve]

It does seem random but they weren't taking any chances with me. I had surgery in May, they found 4 chocolate cysts, grade 4 infiltrated endometriosis extensive adhesions and a full frozen pelvis! So with all that going on there was no surprise the ca125 was so high. Have you got an appointment coming up? Xx

[Emmyeve in reply to Tillyfloss]

I saw a gyny last week but pushed for a BSGE specialist appt. I have one 7th December but decided to pay to have one next week so could be seen sooner. What does the frozen pelvis mean for you? Did they operate on that? Everything sounds so scary I’m really frightened as my sister’s bits and bobs are all stuck together with her endo but she wasn’t really told anything more than that. She now has a lot of pains and had some bleeding when pooping a little while back. I’ve been telling her to see a BSGE specialist as she may have rectovaginal endo. She had bowel specialists look at her not even considering endo related. And we are so alike health wise so I’m thinking oh gosh what if I’m the same! It’s so Scary not knowing what is going on in there, the damage that could be going on.

[Tillyfloss]

Hi. It is frightening I had no idea I had endometriosis they thought they were dealing with a appendicitis! A frozen pelvis is where your organs can't move freely like they should. My organs were encased in adhesions and then stuck together and my abdominal wall. Yes it took them six hours ( they thought it was just cysts) but they sorted most of it. Hope your appointment goes ok sometime going private is a must. Xx

[Emmyeve in reply to Tillyfloss]

Omg that sounds scary. But all your organs function normally? 6 hours jeez! Was that a painful recovery?

[Tillyfloss in reply to Emmyeve]

Yes they think so, my bowel isn't brilliant but as long as I'm careful what I eat it's manageable. I had open surgery in September which was harder to recover from, the lap was much better I was feeling comfortable much quicker and it was less painful. Xx

[Emmyeve in reply to Tillyfloss]

Do you mind if I ask how old you are? How come they didn’t see all the damage in your Sept 2016 surgery?

[Tillyfloss in reply to Emmyeve]

I'm 35 and hadn't heard of endometriosis before September 16. It was a general gynaecologist that did the first surgery,she said I had patches of mild endo and to be fair it was emergency surgery overnight but the specialist said it is sometimes hard to spot if they aren't dealing with it regularly. Xx

[Emmyeve in reply to Tillyfloss]

God I thought you were going to say you were a lot older. Personal question , does the frozen pelvis affect your fertility? Did you not have symptoms in your teens or 20’s? Super painful periods, heavy periods, pain after intercourse?

[Tillyfloss in reply to Emmyeve]

Haha some days I feel older!! No I was fine until 2015, had an inflamed womb but in hindsight was probably a ruptured cyst. Yes it's affecting my fertility, as my right ovary had to be fully reconstructed, we are at the beginning of the ivf process . How old are you? Xx

[Emmyeve in reply to Tillyfloss]

I’m 36. No children yet. How did you know you had an inflamed womb? So you can carry a baby In there after working on frozen pelvis and organs? I’ve always had horrific periods since I was 13. Incredibly painful to the point where I could barely lift my arms and legs and so heavy, a tampon and pad at same time couldn’t cope. Complained but my Mam said that’s what happens each month to women bla bla. I was always top of my class but when got my period it really had an awful impact on life. I’d skip school in case I leaked in class & I really struggled with the pain that I wouldn’t be able to concentrate. When I got older it would hurt after sex. My sister was diagnosed with endo and I started to get similar pains but all month long instead of just at period time. Had lap 2010 confirmed endo. I get ruptures every so often but I’d stick to clean diet I get Short and light periods (had never had a light period in my life before). Recently had little back pain and did bloods. Ca125 came out at 120. My sis has severe endo & her CA results are always fine weirdly. Had scan and they saw 8cm cyst on right side and on left Fallopian tube appears to be clear liquid, suggestive of hydrosalpinx. We get all the fun conditions us women!