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Awaiting CA 125 results

Hi guys - I'M 45 and I'm currently awaiting results from my CA 125 test which was taken almost 4 weeks ago, I was told at the time of the test that it could take 3 weeks to come back - this time has elapsed now and my Dr has assured me that 4 weeks is quite normal. Emotions are up and down - one minute I'm positive and others I'm just a crying mess. I, like many of u, have googled and googled OC and filled my head with all sorts! My symptoms seem to be different from everything I'm reading and just wondered if anybody else has experienced the same as me. I started having diarrhoea in November last year and it just hasn't stopped, I haven't had a 'normal' bowel movement since then. Unlike what I'm reading.. I am eating normally, I'm not losing weight - if anything I'm putting it on. I experience an extremely heavy sensation in my lower abdomen which can sometimes make it difficult for me to walk - this seems to be more of a problem around when I have my periods (which are painful but regular) Has anybody else had the same symptoms as Me? Can I just say that you are all extremely brave ladies out there and I honestly don't know how you cope with what you are going through on a daily basis.

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Hi Suziem

waiting for results is always difficult and worrying. The ladies on here have had all sorts of different symptom and often very vague. Or, like me no symptoms at all.

Four weeks is a long time to wait and i would not be very happy with that but does depend where you live and how busy the department is. Worth asking your Dr again I feel.

It is worth remembering that the CA125 is not a definitive test but does work for some. You are the best person to know how your body usually/should feel.

Let us know how you get on- thinking of you.

best wishes

Fay

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Hi Fay, thanks for your reply. I live in a small town in Scotland... We seem to wait longer than what people in England do for some reason. It has been an awful long wait and Im about driven up the wall waiting! I phoned the surgery 3 times last week and the Dr herself actually called me back Thursday just gone there and said its normal to wait 4weeks! I will certainly be phoning again on Monday morning and I won't be fobbed off this time x

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I had to wait 7 weeks for the results of my biopsies - the only way I got the results in the end was because I threatened to sue them if it turned out to be cancer; oh boy, they called me in the next day... it was cancer, but I didn't sue, it was just to get them to react. It might be you have to wave a similar threat around, depends how tough you want to be...

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Wow... That's a way to get results! Maybe I should try something like that! Defo phoning them in the morning and gonna leave them in no doubt that I'm not going to wait around any longer! I'm sorry that your results were not good news... I hope you are keeping well x

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I think be as tough as you like, it’s your body!

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They're telling porkies....4 weeks is unacceptable.

I would jump up and down and shout and scream if they go one day over 4 weeks.

When I was diagnosed ( amazingly by my GP on first visit), he took blood to include testing for the CA125 marker. The hospital rang the NEXT day and he rang me as it was way too high ( in the 3000's), so my life with O.C. Began.

I would say - hopefully - they haven't prioritised yours because it is OK. And within normal limits .

I know it doesn't help with the worry until you actually know and what it means for you...

fingers and everything crossed

Janet 🌈

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Thank you for your reply Janet. That's actually what has been keeping me going is the thought that I'm okay and not a priority... Bitty crap though to leave somebody waiting this long! Sounds like you have had a good doctor and hopefully caught yours early. Were you having a lot of the similar symptoms that they tell you to look out for? X

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I assumed IBS also, but yes all the classic o.c. symptoms - stupid thing was I left it too long to see G.P. However probably only really noticeable ( bloating, much reduced appetite but weight piling on, bladder problems, reduced energy and activity levels) in the 2/3 months before I went. Got diagnosed st 4 high grade serous in June 2016 and now on 4 th lot of chemo...

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Oh I'm sorry to hear this Janet, must have come as quite a shock for you. X

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That's it if they are really worried about you and it's urgent they have you seen asap.

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Hi Suz, 4 week’s is way too long. I had bloods on a Monday, back Wednesday when first diagnosed. Now I think it is a few days, up to a week at the most. Get your GP on your side & explain all your symptoms to him/her again (& again if needs be). It took me 2 trips to the GP. Hope all turns out well with your results. Linda x

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Hi Linda, I have to say my GP has been really good... OC had never entered my head.. I just assumed I had IBS.... It was him that said that due to my age and having never showed IBS symptoms before he thought I should have this test...that even took a week to arrange though... So all in all it has been a VERY long 5week wait so far! I am going to definitely phone again on Monday though and push for some kind of resolution - I do have health insurance and have been seriously toying with going through that! X

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Yes 4 weeks is way to long, mine can be back the next day. Start jumping up abd down. We all know the stress and anxiety of waiting for results and yours seems entirely unnecessary

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I had thought 4 weeks was taking the mick a bit tbh.... But the nurse did say at the time that it is a long wait for this one... She said she'd had it herself and waited 3weeks! I just need to know one way or another so that I can move on and deal with whatever the outcome x

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Hi, I am with all the other women 4 weeks is far,far too long and totally unacceptable. You defenitely need to go back to the GP and be assertive. Sincerely hope the level is normal. Chris

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Thank you Chris.. I'm definitely going to see about this on Monday.... I am starting to wonder if my test has been lost!! Hope you are well x

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Four weeks is far too long, I had my result within two days. It’s fair to say that if the result is normal there might not be a rush to inform you but the lab cannot know whether the result is high or low until they’ve tested the sample.

If it’s not OC, whatever is wrong with you needs investigating and presumably nothing further has been done this month. I’d politely suggest to your GP practise that your sample may have been lost. You maybe could offer to pay for a private test; I think they cost the NHS £25 but I’m guessing it’s more than that as an individual.

Statistically, you are on the youngish side for OC and this might be why your practice has little sense of urgency. Nevertheless there are still many young women who do have the disease so it’s important to chase.

Hope things get sorted for you.

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Hiya.... Im thinking if I have no luck beginning of the week I'm going to go private. I have also been waiting on a colonoscopy which appointment has actually come through yesterday for May 1st so at least I know if this does come back normal they are going down other avenues which makes me feel better. Hopefully get to the bottom (excuse the pun lol) of this soon x

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😄

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I get my results the next day, sometimes the same day. I am in Canada. Finally some signs of spring here after much April snowfall.

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😳😳.... That's quick! Seeing a wee bit of sunshine here as well... Always brightens up the mood x

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Mine came back in 4 days!

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Just wish mines would hurry up!..

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No news is good news ! 🤞

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It's abs inhuman to keep you waiting on tenterhooks and tension for four weeks. Would the guys that be, be so lethargic if it were someone from their family?

Naimish

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You're absolutely right.... It's a really long time to have to wait x

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I remember when I was waiting for results of a blood test myself and I got myself in a right state as well thinking of the worst case scenario as for any kind of results it's the unknown and the waiting that makes it a stressful time for everyone.

Thankfully my results came back fine and I had ended up crying with relief as I did a few weeks ago when I was discharged from the hospital respiratory clinic as I had a pulmonary embolism back in December but I am a lot better now.

If they have caught something early then they can treat it easily.

It's the unknown that causes the upset.

Good luck!

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That's good to hear you are better now, sounds like you've had quite a time of it! You're absolutely right... It's the waiting around that droves you round the bend. I try my hardest to be as positive as I can. Sometimes though, I know this sounds awful... But sometimes I feel the need to talk about the what ifs! It's like everybody round about you is so intent on telling you to be positive.. Pull yourself together etc.. But that makes me feel like I'm having to shut away the negative thoughts I have... I sometimes feel the need to release them and voice them... Does that sound terrible? I told my workmate this one day as I was sitting trying to fight back tears and he took me for lunch and let me cry and let me talk about my fears and how im really feeling and it actually has helped me to deal with the waiting around better than what I was. But 4 weeks on.. I'm really needing answers! X

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It's because you are frightened that you need to talk about the what it's and how you would handle them should they come up. Not awful at all to need to talk about things that are getting you down.

I was told by someone when I tried to talk about being frightened over my results that turned out fine after but them being fine after the fuss isn't the point though well you can't do anything about it which was no help but no problem one day they will be in distress over a problem and hopefully they will receive the same treatment as what they said to me.

I know not to go to them again about anything after that but where there's no sense there's no feeling in my view!

Most people's results are fine though but it doesn't change that you are worried about if they are not though.

That workmate has probably been through similar themselves and it was kind of them to sit and listen to you and take time for you.

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As they say... You start to know who your true friends are in times of need eh. Thank you for your kind words x

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That's what happened with me as the genuine people rang me up and visited me and supported me when I was down and nothing is too much trouble for them.

People like the well there's nothing you can do about it like manager who said that aren't very nice people to know in my view and that taught me a lesson when that happened that she is not capable of giving support to staff for personal things and that it's their problem not mine!

They were foul to another colleague who they sacked for being off sick for ages and this lady is only 53 and recently found out she has terminal lung cancer which is bloody unfair!

Hopefully your results will be fine and in time you will laugh about it and wonder what all the fuss was for.

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Hi Suziem72! First of all, take a huge breath and stay KFC Google at least until you have a firm diagnosis. All it will do is confuse you at the very least.

Second, continue to be very active in getting test results. I am shocked at hearing 4 weeks to get CA125 results because I get all my tests back within a day. But I live on Charleston SC within 2 miles of 3 large hospital complexes, not in a remote small town in Scotland, which sounds lovely by the way.

I cannot bell with symptoms. I had a large hernia that mimicked OCs symptoms so thank the good Lord I had hernia surgery and tumors were found in my abdomen or no telling how much more serious mine would be.

I hope it IS only IBS but know you have great support here and lease let us know what's up! Big hugs! Jill

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Thanks for your reply Jill.... I have been managing to stay away from Google... Now I've found this site I find it much more helpful! I hope you are keeping in good health after your surgery. I will let you all know when I eventually find out what's going on x

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I am granis's husband and am sorry to tell you after 9 battle with ovarian cancer she passed away on 11 Feb . Aged 80 . Re ca125 she had about 60 blood tests and got the result within 3 days . What planet is your doctor on when he says 4 weeks is normal.

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Sorry to hear of your loss.

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I'm so sorry, Granis's husband, to hear that Granis has passed away after her long battle with this horrible disease. I was away all of February and March so I was out of touch with HU. I do hope she had a peaceful end and it wasn't too traumatic for you (and family?) Please accept my deepest sympathy. Sending a big virtual hug and hope your life is settling down to it's 'new norm'. Take care of yourself, Solange. Xx

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Aww I'm so sorry to hear this.... Sounds like she didn't give in without a fight.. Brave lady x

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Hi love,

4 weeks is unacceptable under any circumstances, I had mine back in 2 days.

Hopefully it means there is nothing untoward, but as others have said the CA 125 isn’t a good indication for all.

I’m afraid sometimes it who shouts loudest, hope you have someone to back you up, it can help no end,

Carole xx

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Thank you Carole.... Luckily enough I have a very supportive husband and family. I'm hoping it's a case of no news is good news but even still... 4 weeks to be told its nothing!! Gonna be having a strong conversation tomorrow with my practice!! Xx

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That seems far too long. Results at my local hospital back within a couple of days. I would chase them up.

Good luck.

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Will be chasing them up today for sure x

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Dear Suziem72, I don't understand what is taking so long for results of your CA125. I get one done every month, and it takes less than 24 hrs. to get results.

I think we all have different symptoms, depending on the location of tumors, and their types. I was severely constipated, as one tumor interfered with the Colon's ability to inject water into the stool. Also, I had gall bladder pain, as one tumor was pulling on my gall bladder, causing it to malfunction. I did have that heavy feeling you described, though. Also, as tumors we're pressing against my stomach, I couldn't eat as much food (even so, I was putting on weight!).

I hope your physician will get to work on finding your CA125 results, or give you a new test, as the results should be available in 24-48 hours at the most!

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Yeah I have picked up from this site that symptoms are completely varied... Nothing as straight forward as Google lead you to believe. I hope you are keeping okay. I'm on my way to work now but will be phoning the surgery as soon as I get there. Gonna be quite hard with them and let them know I'm not waiting around any longer x

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Dear Suziem72, I hope you were able to get results from your phone call! Thanks for your concern; I'm doing quite well as I've been in remission for almost 5 years, thanks to Olaparib!

Please keep us posted!

💖Margaret

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Hi Margaret... The surgery looked into things for me and I got a call from the Dr a couple of hours later. My CA 125 has come back elevated so he is arranging a scan for me... Says he will mark it urgent and I should have an appointment within next 14 days... Not holding my breath though... I know what there urgent is lol:)That's great news about your own health xx

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I'm sorry you have the "urgent" classification, but I'm glad you got some action; they owe you some stat testing, for sure! Are you getting a PET/CT? Hang in there, and treat yourself with loving care! There is hope!

💖Margaret

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Tbh Margaret... I don't actually know what it is I'm getting.... I was kinda of too taken aback to think about questions at the time... He just said it would be a scan to have a look at my ovaries. I definitely feel better after knowing my results... Knowing what the next steps are makes it a bit easier to deal with. As I've said before.. Reading about all you ladies experiences on here and the things you've all had to go through gives me great inspiration. If I have this illness I am gonna just deal with whatever it throws at me and if I don't... Well bloody hell u are all invited to one massive party 🎉 xx

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Best of everything to you! We would all be happy for your party!🎉🌈🌞😘💖

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Keep us posted!

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I absolutely will x

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We live in Kuala Lumpur. My late wife got treated at the local public hospital here and the CA125 came back after 3 or 4 days latest 4 weeks waiting is a long time unless the hospital mentioned that if the result is above normal they will call you up immediately. Your not losing weight is a good sign that everything is normal but then the bowel trouble and painful periods something you need to consult the onco. My wife was 46 when diagnosed and she experienced irregular periods and bloating.

I pray that everything is well with you.

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I'm sorry for your loss and I appreciate your reply. I think the reason mine is taking so long is that it is all done through my surgery... They send the bloods off to the hospital and wait on them sending results back... But as you say 4weeks is a looooong time! X

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Do you have access to online lab results.

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No I don't unfortunately.... I did however after phoning them up yesterday morning... Get my results.... They have come back elevated and a scan is being organised for further investigation.. X

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4 year ovarian cancer survivor here. First of all, 4 weeks is ridiculous. I'm at MD Anderson in Houston and I get my CA125 results back same day. But as Petrolhead said, CA125 is a marker not a diagnosis. I had stage 3B and my CA125 was only 18. I had no symptoms either. Call daily until you hear. Squeaky wheel and all that. No one will advocate for you like you can. Best of luck.

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Hope you are keeping well now... It seems like it is a hard illness to detect and everybodys story is different. I did get my results back yesterday after I told them I wasn't willing to wait any longer... It came back elevated and I'm now waiting on word for a scan. Was quite out of sorts yesterday but actually feel more relaxed today... I think it's just the fact I now have an answer and know that I have further investigations to go.. My journey has begun... And no matter what way it goes I can at least start to look forward... I no longer feel like I'm in limbo if that makes sense x

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It makes perfect sense. My first hint that something was wrong came in the form of a pelvic wash that had contradictory signs of both fast and slow growing cancer. My doctor - brilliant though his English isn't great - pointed to words on a lab result. I saw "carcinoma" and flipped. He sent me to MD Anderson and all the results were negative - other than that pelvic wash. My oncologist persisted and performed a complete hysterectomy where we found metastatic stage 3b cancer on the outside of my ovaries and uterus. Then we were able to develop a plan (18 weeks of weekly dose dense weekly carbo/taxol chemo). The worst part of the whole thing was waiting to find out what was really wrong. Even the confirmation of cancer was better, because we had a plan to deal with it.

Advocate for yourself, and get the best treatment you can arrange, if you have to beg, borrow or steal to do it. You're worth it.

Many hugs to you and prayers that it turns out to be nothing. :)

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Gosh... Sounds like you've had quite a time of it! Thank god you had a good doctor who persevered with further investigations. Hopefully things have got better for you now and you are keeping well. Thank you for your kind wishes xx

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