Hi GemLou42,

I can really relate. I am 31 and I have had really bad bloating, pressure and needing to pee very often. It was suggested IBS and  I've had blood works with the CA125 coming back as high at 95 (normal range is 0-35) I was told I would be reffered for scans, I googled everything thinking I had OC. I was supposed to hava an urgent scan within two weeks which is today but hadn't heard anything so called the hospital myself yesterday telling them how anxious I was. I was offered an ultrasound yesterday afternoon and a CT today. After that scan I have been told I have a thick lining and a large cyst on my left ovary which could twist and would become a medical emergency so if I feel sick or have a fever to go straight to A&E.  I have been reffered to a gynacologist and will go back today for CT. I asked if it looked like Cancer and was told no and that the gynacologist will took me through next best steps which I am assuming is surgery as it is so large. 
 

I wouldn't worry too much because nurse told me although mine was 95 it isn't that high and it's likely due to inflammation because of the cyst. Think positive and don't worry yourself unnecessarily. I was making myseld sick with worry. If you don't hear anything call the hospital and try and move things forward. I was told because I needed both scans I wouldn't have been able to be seen until November because of delays due to Covid-19 so I opted to go on two seperate days and this is a large hospital in East London. 
 

Anyone sorry to write such a long post but it is easy for us to convince ourselves it is much worst that what it actually is. Lots of positive thoughts and wellwishes x  

Hi JamieCK

Thank you for your reply. The only symptoms I have really had were the needing to pee more. I have had gut problems in the past and was told it could be ibs. But no one has ever confirmed this. It's no hard not to Google things and I have obviously been worrying myself sick thinking I have got ovarian cancer. I am glad you have managed to have your scan and at least know some of the problem. I wasn't sure if they would be telling me anything at the scan or whether you then have to wait for the doctor to get in touch with you about results. I am having my scan this Sunday so I am just keeping my fingers crossed and hoping for the best. 

Love and best wishes to you too ️. Xx

Hi,

Its worrying how many times us women are fobbed off by our GPs, I have a private scan booked for an ultra sound on Monday. I can't wait for the NHS  not this close to Christmas. I'm a worrier and it will be make me ill

Hopefully you will get some help

Sam

Yeah totally agree. I wish I could afford a private scan but for now just have to hang on. I am a worrier also.

Hope it goes well on monday. Let us know how you get on.

Wishing you all the best.

Gemma

I hope your ultrasound goes well on Monday. I ended up getting a 2 week referral for mine, so it lands on Monday 13th December. Results of my CA125 due back next week as I have all the classic symptoms of ovarian cancer. 
 

Gemma, when is your ultrasound booked for? 

Hi , 

I too have been going out of my mind with worry. I have a large ovarian cyst (10cm) and my Ca125 level is 65. I've been fast tracked and my appointment with gyno is 13th December. When the doctor told me I cried for a full day, but then I found this forum, it's really helped ease my mind, and it does seem that women around my age (42) usually have a raised ca125 level. I hope everything goes ok with your scan x

Hi

Thank you I'm so scared I keep crying. I am 41 and I had a large ovarian cyst 20 years ago, and had my ovary and tube removed. I have also read that CA125 can be raised as well at our age. But I will know soon if there is anything to worry about.

Thanks

Sam

Hi Sam, 

Sending best wishes. It's all a bit overwhelming so try to take it one step at a time. Focus on your next appointment and so on. 
 

laura 

Hey, had my scan and I have a small cyst, having a rescan in 5 weeks they hope the cysr will go on its own but due to my history want to make sure.

So I can now relax, she also said that doing a CA125 when I'm still having regular periods should not have been suggested because hormones can make the levels fluctuate.

Thank a everyone for your kind commnets. It does really help speaking in these groups

Sam xxx

Hi Sam, 

That's great news! Really pleased for you. I'm 42 and still have regular periods so you've put my mind at ease a little.

have a great Christmas 

laura xx

Ladies just want to say this thread has talked me off the ledge. I got a call on Tuesday this week to tell me I had elevated levels on my ca125 test (47). I'm 43 and have had a pain on my left side for the last year. Initial scans found a 13mm fibroid and I was told they usually resolve. Dr eventually ordered further tests as it didn't feel right that I should be living with this pain. Now I'm properly freaked out. It feels like the dr has told me I have ovarian cancer. He even said 'I'm sorry to have to give you this news'. I've been referred privately, appointment on Monday, also paying to have my own ultra scan tomorrow because my head is scrambled and I can't stop thinking about my children. I'm a mess! Nsh referral letter came through today and says my appointment will be virtual! How will they achieve any diagnosis that way??! Thank you for sharing your stories, they have helped me. 

Hi mummy_vibes, 

Let me tell you , they cannot diagnose anything virtually. They also cannot diagnose any form of cancer without a zillion tests and scans. I've had 2 ultrasounds, 3 CT scans and last Sunday and MRI, I joked with the hospital that I only need an X-ray to get a full house on scan bingo. I'm 43 and my ca125 is 65, 35 is considered normal , I also have a 10cm ovarian cyst. I've had people say it's concerning, other people say not to worry. Truth is, until it's out and tested I will not know. Please try not to worry, worrying doesn't solve tomorrow's problems, it only robs us of today with our babies. You got this!! It helps me to write things at night in a journal, kinda dumps all the thoughts from my overactive mind on paper xxx

Hi mummy_vibes, 

Let me tell you , they cannot diagnose anything virtually. They also cannot diagnose any form of cancer without a zillion tests and scans. I've had 2 ultrasounds, 3 CT scans and last Sunday and MRI, I joked with the hospital that I only need an X-ray to get a full house on scan bingo. I'm 43 and my ca125 is 65, 35 is considered normal , I also have a 10cm ovarian cyst. I've had people say it's concerning, other people say not to worry. Truth is, until it's out and tested I will not know. Please try not to worry, worrying doesn't solve tomorrow's problems, it only robs us of today with our babies. You got this!! It helps me to write things at night in a journal, kinda dumps all the thoughts from my overactive mind on paper xxx

Thank you for your reply. I'm trying to keep myself busy but the moments inbetween are terrible. I just want to know what - if anything - I'm dealing with! Wondering how much my period might have played in a high reading. I had the test on day 3, plus I feel that I am peri menopausal... 

I was ovulating when they took my blood tests and I think at 43 possibly pre-menopausal. My doctor said that she's seen levels above 100 and ladies not have cancer. Try not to worry. I find that the local doctors just tell you what they think , when you see the specialists they put you at ease x

You're very sweet, thank you for your reassuring words. Are you going to have your cyst removed? Can you opt to even if not recommended by drs? 

Unfortunately my cyst is so big it needs to come out. It's causing so much pain as it's sitting on my uterus. They are deciding if to take the cyst, that and one ovary, or everything. At this stage , I just wish they'd hurry up tbh x

I bet. I wish you well and hope you can successfully put this all behind you and get back to enjoying life and your family x

Try not worry too much, I no that's easily said than done, I've been back and forward they last 7 weeks, terrible pain ca125 was 819 totally freaked out, had scan the next day, so lucky there is no cancer, but a lot goin on due to endometriosis, so now waiting on a mri, and ca125 was done last week again and was down to 39, so many factors can change the result, like periods, flare ups or even just having endo, I hope you feel better xx

This thread has been really helpful for me. I'm 44 period stopped strange symptoms and sent for tests. Thought it was menopause but FSH is normal. Ca125 has come back elevated being sent for a scan and worried sick! 
Reading all the posts has calmed me down a wee bit. 
going private as the wait time for scan is do long. 

I too have had a recent c125 test. The level was 43. I am 50 and pre menopausal. I have been urgently referred for various scans.This thread is very reassuring.

I was on the first day of my period when I had the blood test. I have lower left side pelvic pain that is almost constant, but doesn't get worse during periods. My transvaginal scan is Monday and seeing a gynelogical consultant for other tests Thursday. NHS have been very quick and efficient so far. Grateful to them but scared silly. Don't want to leave my children without a mother.

I've had an ovarian cyst for over 4 years and have consistently had a raised CA125.  I'm 44.  My levels were mid 40s but my most recent test is 88!  My cyst displays no sinister features at all and is described as a 6.9cm simple cyst, but my CA125 raising is a defininte worry to me.

Thanks for reply. I had my scan today and heard the technician say that my right ovary was 3cm and my left one was over 6cm. (where my pain is) I panicked and told her what I heard and asked is it cancer? She replied that I don't have cancer. I asked what do I have then?  She said she can't discuss it. Hopefully it's a benign cyst. I will find out on Thursday.

Have you not been advised to have the cyst removed? Does it cause you any pain? Why are the doctors not concerned that you levels are high? I did hear that you should never have that blood test while on a period because it can give false high results.

W