what to expect

[poeticlady]

Hi, just been to see a specialist, got sent via my GP, after my CA125 blood test came back 130, have swollen tummy, fullness,told I need a scan both internal and external,maybe a MRI scan, there is family history,I am almost 54, so don't know what to expect, any thoughts would be greatly appreciated, feeling scared at moment .thanks

[Hidden]

Well that is not a high number really, it could be due to many things and that is why you are getting scans etc Hope you dont have to wait too long for scans and results and if the worst happens, there are plenty drugs out there to get rid of the disease but it may not come to that, wishing you the best

[poeticlady in reply to Hidden]

thanks Suzuki, I was told my by GP that the reading was high along with my symtoms, but hopefully my scans on Saturday will put more light on it all,as there is family history

[doodoolatrice]

Hi poetic lady, I had an internal and external scan and this was followed up with a CT scan a week or so later. Then I had a phone call to say I was being referred to a Gynaecologocy Oncologist who told me he suspected OC and I was booked in for surgery the following week. The whole process from visiting my GP to having surgery took six weeks so things happened pretty quickly. My initial diagnosis was borderline OC but two and a half years later it has returned as low grade, good luck, Kerry x

[poeticlady in reply to doodoolatrice]

Hi Kerry, thanks for your reply, it was an oncologist who saw me yesterday, I go for my scans Saturday,did you have high ca125 reading,as I have read that 35 is the normal range,xx

[doodoolatrice]

My! Yes anything below 35 is considered normal and mine was 229 which is certainly abnormal but not particularly high either. My disease was staged 3a so it was quite extensive, Kerry x

[poeticlady in reply to doodoolatrice]

okay so I shouldn't worry too much about the blood result then, just wait for the scans x

[doodoolatrice]

Don't put too much emphasis on the blood test, good luck and let us know how you get on, Kerry x

[poeticlady in reply to doodoolatrice]

thanks Kerry ,will let you know xx

[Alex53]

I'm not a doctor but my understanding is that the ca125 is an indicator. My GP told me some people have very high ca125 numbers with benign conditions eg cysts. Unfortunately that wasn't the case with me but my reading was over 800. The waiting is the worst bit but it sounds like you're getting good quick treatment. I'm assuming from what you've said they'll start with an internal and external ultrasound. That's painless and absolutely fine and the beauty is they can give you the results on the spot. Good luck and let us know how you get on.

[poeticlady in reply to Alex53]

wow that's sounds really high, yes your right with the scans,didnt know they told you on the spot, the oncologist told me, he'd get my results, and disscuss it in clinic with me,depending on the outcome, might need an MRI scan too,really appreciating all the positive feedback from you lovely ladies, thank you

[rossetti09]

Hello there

I had been having symptoms for years but because of other circumstances in my life was only offered a CA 125 test 6 months ago . It came back raised and was monitored for a couple of months. As was still raised then sent for scans which showed solid cysts on my ovaries and endometriode growth on one of the ovaries.

I have now been referred to a gynaecologist but there is an eight week wait for the first available appointment.

It freaked me out when I realised what the test is for but am now resigned to what will be will be.

My GP would neither confirm or deny OC so in limbo at present !!

This site has helped me put things into perspective in that raised blood results do not necessarily mean cancer and until I have been told otherwise I will try not to worry about and stay positive.

😆

[poeticlady in reply to rossetti09]

I too have learnt more on here, as you have questions going around,which you have no answers too. reading your post I guess I am lucky that from the test been taken on the 1st of this month ,I have seen an oncologist, and going for internal and external scan this Saturday,Maybe there is longer waiting lists in different area,s.its the waiting that's the worry,too much time to think,could you not get on a list for any cancellations .

[rossetti09 in reply to poeticlady]

I have spoken to someone else today and they got an appointment offered for two weeks after referral to specialist. Is it me or is an eight week wait too long ?

I feel my life is on hold

[LesleyGreengran]

Other things can cause those symptoms but if you do have ovarian cancer - I was diagnosed in December 2010 and still here and enjoying life. I will need treatment again soon but I feel so well after it (eventually, the chemo fatigue lasts a while) that i feel quite positive about that too.

[poeticlady in reply to LesleyGreengran]

reaaly pleased you are doing well, you automatically fear the worst don't you ,but like you have proven 5 years on and going strong, on my examination, he felt a bulk in the ovary region,so made me more concerned, but I have heard you can get benign cysts,that cause these symtoms too

[totty]

By the sounds of things your Drs are onto it and things are moving fast, sometimes too fast for you to take everything in so take someone with you to LISTEN with you and ask questions. Stay positive , sounds trite but it really does help. Good luck, better found early than later Marilyn

[poeticlady in reply to totty]

yes that's what I thought as well the quickness of it all, but do agree better to be fixed now,than later,thank you Marilyn ,

[Hidden]

Great that you dont have to wait long for the scans, then you can talk to your consultant, maybe bring someone with you that can remember what you forget because I know I focus on somethings not all and I get into a silly muddle. Wishing you well for Saturday, they dont do scans here at weekends, we dont have oncology services in public hospitals after half five or at weekends.

[poeticlady in reply to Hidden]

Yes I am taking my hubby although his a tad nervous too,thanks for your help will post when I know more

[Hidden]

It is good to involve our better halfs or sisters or friends because they do listen and while we pick up on the negative, they pick up on the positive. I used do it all alone until the liason nurse told me to cop on. My hubby was in the army so I am used to doing things since the children were small and then cared for my late parents so I have had to change my outlook a little.

[thesilent1]

Hi, the sister of a friend had a swollen tummy and ca125 result like yours. It turned out to be a fibroid. My own A125 result was 1608. You are being seen pretty quickly and with scans on Sat, that's good. At lest you don't have to wait a few weeks for them. Be prepared for a wait for results though as the cons tend to discuss them at a multi disciplinary meeting. If its just USS you are having on sat, you may well be told those results on the day, depends on who carries out the scan. If a cons, yes, if a radiographer, probably not.

Good luck. Let us know how you get on.

[poeticlady in reply to thesilent1]

Thanks the oncologist said he would

[poeticlady in reply to poeticlady]

Be seeing my scans then make a decision whether I need a MRI scan.I do have a strong family history of ovarian cancer grandma aunties and a niece my sister had cervical cancer so maybe that is why they are being quick will let you know what happens .

[thesilent1]

Good luck. Ann xo

[poeticlady in reply to thesilent1]

Thank you

[Lily-Anne]

Good luck. My CA125 was 34 at diagnosis, and although nobody seems to take it that seriously I hate waiting for that number. It was 7 post op and is now 14. It could be fine despite the family history, there are other things that cause bloating and raised levels, so try to chill until you know for sure.

LA

[poeticlady in reply to Lily-Anne]

I think I got myself into a tis due to the shock as I wasn't expecting it.much calmer now thank to all you nice people on here

[Wiganw]

Hi

Ca125 is different for everyone as others have said. I would say don't worry as that won't acheive anything. I would just act to get to the bottom of what the problem is. Hopefully the tests will happen quickly and you will get an answer sooner rather than latter. Do push the tests along its best to be safe than sorry as early diagnosis is really important.

Sharon

[poeticlady in reply to Wiganw]

Thank you,I am in a lot better place now thanks to all you lovely people who have shared with me your own experiences.still have the scans done in the morning and hope for the best.I think my head wobbled because I do know what it all can mean,my niece is just starting her radiotherapy after her total hysterectomy aged 35 and I was thinking lighting doesn't happen twice so quick..

[Aemi]

I too had those symptoms and was so scared of what might happen and of each test I had. My stress levels were sky high. Then my self protection mode kicked in and though I was burying my head in the sand about the situation it has helped me cope.

I've had an operation to remove stuff and now about six months later after tests there is no evidence of disease. I will have tests every six months to check all is well. I feel well and am just getting on with my life. It's always at the back of my mind but worrying just robs you of the good bits so I head bury.

Wishing you well

Aemi x

[Hidden]

good luckwith the scans .

I had CA125 tests over a period of several months,my first reading was around 180 coming down to 37(still above range)with different results from a hospital for the same period(lowest reading 14-15)so dont see how this is reliable.have had no definite diagnosis although all scans said to be normal-still have abdominal weight gain?distention and loss on hips and legs.distention and heaviness have spread to pelvic area and now I can barely walk somedays.it has been ongoing and worsening since 2012 ,being there from the moment i get up,yet no one will acknowledge my ever expanding "waistline"(not down to diet or lack of exercise)or diminished appetite..I still take my dogs out tho every step is painful and I cant walk half as far as I used to.

it has been suggested IBS (only in a letter )but I know it s not.my symptoms are persistent and now ive seen a physio who has ruled out anything related to pelvic floor,hope gp will refer me to gynae/oncology .I have diverticulitis,duodenitis.hiatus hernia(diagnosed in november by endoscopy after 2 years of suffering)but have had acid reflux and abdominal distention for a lot longer.given meds for constipation which I ve never had on a regular basis ensuring me they would reduce my stomach -made no difference.as there are several causes for abdominal distention why hasnt anyone considered them?i feel full all the time and never hungry.so make myself eat breakfast and a small meal.

recorded as being "obese" by my gp based on BMI reading but he has never accepted my weight gain as being abdominal or loss elsewhere.and now I read that my conditions (above) can be caused by OC.

[Sunfleury-UK in reply to Hidden]

Ca125 levels can vary and also be affected by hormonal changes (especially pre-menopausal) and other conditions which cause inflammation. It is only an indicator for Ovarian Cancer and part of what is used to make a diagnosis alongside information from scans and histology. CA125 can therefore sometimes give false positive results as well as sometimes false negative results- eg some tumours such as Mucinous often do not cause a raised CA125.

I aware that you've been concerned for some time about the possibility of OVCa and have had a lot of medical involvement and discussions about this. I'm sorry that you still feel there are unanswered questions.

[Hidden]

hi Sunfleury.thank you for you reply.my periods stopped in 2008 so its not pre or post menopausal .mine was monitored for about 8 months but no doctor has ever suggested anything else giving a negative result.i am concerned mostly from what ive read about OC and the fact that ca125 can be an unreliable test.it is the fact that my stomach is increasing and weight loss elsewhere(that no one is accepting) plus my dogs' behaviour has changed in the last 18 months.i feel that fro my weight to increase as much as it has in the last 3 years,and predominantly abdominal it has to be something.

been ive just seen physio and monitored pelvic floor muscle function and i ahd difficulty tightening my muscles couldnt feel anything.so hoping this will encourage gp to take me seriously but he is not available til 11 th may.

[Sunfleury-UK in reply to Hidden]

I know from your many posts that you have a number of health concerns and are seen regularly by medical proffessionals. They really are the best people to work through your concerns with. Sx

[Hidden in reply to Sunfleury-UK]

yes I know but tis hard when he doesn't take me seriously and I find it hard to have faith when hes said things like "its your stomach" " i cant feel anything " "wear make up "etc and hasn't answered quite genuine questions that anyone would ask in the past .im trying to accept what he tells me but he has to reason with me too and come to a compromise not say "im not having anything to do with something"when that something is a major concern