ovarys: please help im so worried here. i had... - My Ovacome

My Ovacome

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ovarys

lizalily profile image
36 Replies

please help im so worried here. i had some bloods done on tues, had a call from the docter this morning that he needed to see me urgently. so i went and he said that my CA125 test was high, and is snding me for a scan,im really scared, the way he was talking as if i have ovarian cancer. please help

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lizalily profile image
lizalily
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36 Replies
Lyndy profile image
Lyndy

Hello...sorry to hear you are in this position...the waiting for scans and results is always nerve wracking. Please be reassured that your GP is doing the right thing. A high CA125 doesn't mean you definitely have cancer but it is an indicator that something is going on and it should be looked at.

Please try not to worry...I know that's difficult but please don't look at Google...the stats for OC are out of date and quite frightening! And besides...it could be something else entirely...so why wind yourself up unnecessarily??

Don't forget you can talk to Overcome or Macmillan for support whether or not you get a diagnosis. You will get through this xxx

lizalily profile image
lizalily in reply to Lyndy

Thanks for the nice words but I'm in a rite state . I have had cysts in the past and endo would that higher it ? And also had my period on day of testing would that higher it

ScardyCat40 profile image
ScardyCat40 in reply to lizalily

I was in your exact same position 6 yrs ago and it is scary but deep breaths and you can get through this.

In answer to your question many things can raise your CA125 and endometriosis is one of those conditions. Your GP is being very thorough and following government guidelines. Many women have to fight to get their symptoms taken seriously.

lizalily profile image
lizalily in reply to ScardyCat40

What happened to u ?

ScardyCat40 profile image
ScardyCat40 in reply to lizalily

I was eventually diagnosed with ovarian cancer that was 2011

lizalily profile image
lizalily in reply to ScardyCat40

Oh no really whst was your level

ScardyCat40 profile image
ScardyCat40 in reply to lizalily

Unlike you I did not have endometriosis. What do you mean by level?

lizalily profile image
lizalily in reply to ScardyCat40

The test for ca125

ScardyCat40 profile image
ScardyCat40 in reply to lizalily

My CA125 was 2400 do you know what yours is?

lizalily profile image
lizalily in reply to ScardyCat40

Wow really are u in the U.K. Mine is 108

ScardyCat40 profile image
ScardyCat40 in reply to lizalily

Yes I am in the UK

lizalily profile image
lizalily in reply to ScardyCat40

So whst would I say about my level

ScardyCat40 profile image
ScardyCat40 in reply to lizalily

All you can say is that it's elevated the numbers are not directly linked to the type or even the stage of the cancer

lizalily profile image
lizalily in reply to ScardyCat40

I don't know what u mean

ScardyCat40 profile image
ScardyCat40 in reply to lizalily

I don't really understand what you are asking me?

lizalily profile image
lizalily in reply to ScardyCat40

Well does the higher the level

Mean more risk

ScardyCat40 profile image
ScardyCat40 in reply to lizalily

No and just because your CA125 is raised does not mean you definitely have cancer. You need to have more investigations including scans

lizalily profile image
lizalily in reply to ScardyCat40

Would it have risen cause of my period

ScardyCat40 profile image
ScardyCat40 in reply to lizalily

As I said there are lots of things that could raise it but none of us can definitely tell you what has caused the rise in your case. I know it's scary but for now you are going to have to wait for the next step. You should have an appointment quite quickly

Cilla18 profile image
Cilla18 in reply to lizalily

Hi. I was told not to ever do a ca125 whiles on your period as it might give a high reading. You have to wait at least 5 days after to do it. Hope this helps.

Katmal-UK profile image
Katmal-UK

Hi, I know you are scared but do one thing if nothing else, do not google, you will find all sorts but nothing can tell you what is happening to you, you are not a statistic, you are you and you will just scare yourself further. Try to take the positive that your dr is being proactive. Lots of things can raise your CA125. Do ring Macmillan or Ovacome if you feel you need to talk to someone. Do you know when your scan will be? Sending you a big hug xx

lizalily profile image
lizalily in reply to Katmal-UK

They said he will send for the scan asap

Zena41 profile image
Zena41 in reply to lizalily

These girls are right get Hun xx

Jen85 profile image
Jen85

Hi, my ca125 was about that, 110 I think. They thought was endometriosis related cysts. Had the cysts removed and ca125 came down to about 75, so a bit higher than the 30ish they expect. Middle of your cycle can also raise it as this isn't a diagnostic test, it's a marker for enlarged or swollen ovaries, which happens every month! My cysts turned out to be borderline ovarian cancer. That means cells which are not normal, but do not invade surrounding tissue, therefore no need for chemotherapy. I'm just monitored every six months through scans. I totally get that you are scared, but there are many many explanations, of which cancer is just one. Consider yourself lucky that your gp is on top of it, it does make a difference! Good luck and try to relax. X

lizalily profile image
lizalily in reply to Jen85

I just can't relax I'm

So

Worried here 😢

Decca4Ever profile image
Decca4Ever

Hi - of course you're worried. I was so worried I couldn't eat. Nerves always go to my stomach! After 2 days of nothing but a banana and a chocolate flake, I went back to my GP and she gave me some valium and put me on a mild anti-depressant. Don't know how I would have got through without it.

And guess what? Here's another Borderline lady. My Ca125 was 130. I know someone with endo whose score was 600. No cancer.

But they put you on a fast-track pathway to rule it out asap. You should get your scan within a fortnight, but be prepared for more investigations after that. I even had a biopsy that was 'inconclusive'.

I know it's difficult, but try not to get ahead of yourself. One day at a time.

Very best wishes and good luck!

lizalily profile image
lizalily in reply to Decca4Ever

Are u ok though? Do u have any symptoms ? Did they find anything on scan ?

Decca4Ever profile image
Decca4Ever in reply to lizalily

Yes - I'm fine! They could feel the tumour. No other symptoms. I just thought I was getting fat. The scan was to see what sort of tumour/cyst. Have a look at my profile for details. It was v large and needed to come out whatever it was.

I'm down to annual scans and bloods for monitoring. Only one more year to go. Just in case.

If they do want to operate, make sure you're being seen by a gynae-oncologist, not just a gynaecologist. You need an expert to decide what's not cancer as much as if it is.

Bailey72 profile image
Bailey72

Please don't worry! Being on your period can raise the CA125 as can fibroids and endo. My CA125 was 276. Urgent referral to see oncologist as well as urgent ultrasound scan. I then got a phone call to have an urgent CT Scan. It showed very large fibroids. I had a total hysterectomy three months after the referral started at my request. Womb was size of five month pregnancy! They sent everything off and all was clear. Please try not to worry . Easy to say I know but it's more often to be something else.

Longshanks123 profile image
Longshanks123

Please stop worrying I did the same as you a couple of weeks ago and really made myself very ill along with my family my ca125 was slightly raised my go scared me too long story short I have polyps and heammoragic cyst and my test was taken on my period all can raise ca125 !

Polyps tested and being removed benign waiting for new scan on cyst they don't seem overly concerned but a don't think so is not good enough so waiting next scan and appointment

Saying don't worry I know won't help as you are scared by hopefully my story so far may put another perspective on it for you

Wiganw profile image
Wiganw

It must be a very difficult time for you but as the other ladies say there are other reasons ca125 can be raised. The best thing to do is push to get your scan done as quickly as possible. You will then be in a much better position. Hope it all goes well

rppizio profile image
rppizio

Sounds like your Dr is being very pro-active which is something that many of us have not had in the past as long waits for diagnosis or being dismissed with IBS. Hoping your scan will shed some positive light on what is going on.

lizalily profile image
lizalily in reply to rppizio

Yes he is but it's all to fast for me I'm worried out my head

ScardyCat40 profile image
ScardyCat40 in reply to lizalily

Deep breaths but the sooner the tests are out of the way the sooner you will have answers to all your questions and then hopefully it will all be over

rppizio profile image
rppizio in reply to lizalily

Liz, Be glad it is happening fast, the waiting and the head games are what drive us nuts. It's always better to know what we are dealing with rather than playing the what if's game for weeks at a time.

Lizchips profile image
Lizchips

Can 125 is only an indicator one of many. Don't panic . Prior to my cancer my friend had been diagnosed almost 20 yrs earlier. When I was diagnosed she told me this is just a bump in the road this year will be hard. But next year is going to be great. I was diagnosed in April, 2014. I never cried my family and friends took care of that for me. I learned that I am very strong. I'm a police officer, I thought that was strength I was wrong, battling cancer and surviving or fighting the good fight is strength. All of us women have this undeniable strength. I went back to full duty 8 months later. 3 yrs later my friend was right it was just a bump in the road. God bless you. You to will be fine. I'm stage 3c. Clear cell , 3 yrs ago. Best regards, Liz

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