Hello Bambi42

I'm sorry to hear that your recent CA125 levels have been raised and that despite a clear ultrasound there are still some concerns about your health. It's understandable that you may have some questions. 

Endometriosis can result in a raised CA125 level but it's important that you talk with your GP or Consultant, about your symptoms and your concerns. It may be that there are other investigations they feel are appropriate to refer you to to get more information. 

If you'd like to chat things through with one of our nurses you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. 

I hope that you have some positive news soon. 

Best wishes, 
Jenn
Cancer Chat moderator 

Thank you so much. I got a

call today and I’ve to have a CT scan soon to further explore what the cause could be. 

Hi Bambi42 thank you for answering. I had a CA125 result of 41 two weeks ago. As it was the last day of my period they tested again a week later and it had come down to 36 which is apparently still too high. My ultrasound yesterday was normal apart from a small 1cm fibroid (which I’ve had for a few years). My GP still has concerns about my CA125 so after thinking everything was fine following my ultrasound I am now back in panic mode again and the anxiety is worse than when I was waiting for the ultrasound.

I’m so pleased to hear that, although they’ve found cysts, kidney stones etc that it isn’t anything more worrying for you. I hope you continue to do well xx

Try not to worry too much, mines was about 77 and I also forgot to mention I had a fibroid of 2cm too - so that could be another contributing reason. Doctor wasn’t concerned after my scans were all clear. Good luck to you Emma. 

Thank you. I’ll add an update when I find out more x

Hi Bambi

im new to this chat

hope you don’t mind me joining

ive just had my 2nd ca125 at 44 last one 2 weeks ago at 57

had a normal uss scan 2 weeks ago, ovaries all appeared good but they did find a 2.5 cm fibroid 

ive been on tamoxifen for 3 years following breast cancer but stoped taking at end of July as had a few issues that gave me cause for concern 

now worried I have another issue to face 

waiting in my gyne apt but feeling very anxious as although it’s dropped it’s still too high

would welcome thoughts from anyone with similar issue 

Lucy xxx

Hi Lucy7773 I’m sorry to hear you are also going through all this worry. As you may have read in my post above I tested on the CA125 at 44 and a week later it was 36 and I was happy it had come down. I had an US and nothing showed apart from a small 1.2c fibroid which I’ve had for at least a couple of years. After my US my GP was concerned still about it being 36 (even though it had come down from the previous week and had the normal US result). I was on the last day of my period for my first one at 41 which is why they retested a week later. I asked if I could have a 3rd test so I could see if it had come down even further and my GP said no because she was referring me on the 2 week pathway back to gynaecology. I have an appointment for this on 2nd September and I am absolutely terrified!

Have you been referred on the 2 week pathway? Did your GP say if it could be anything else other than the big C? Mine was very vague when I asked which makes me worry even more.

The only positive I can find while I’m waiting on my gynaecologist appointment is that people on this forum have had raised CA125 results and it’s been down to something else. Xx

That should say 41 for my first CA125 result.

Hi Emma

Lovely to hear from you 

my first ca125 was done whilst I was on my period which I understand gives a false read for ca125

I am due on again any day now and had my last test 2 days ago, it has dropped but still high at 44

my recent uss showed my ovaries were fine and all appeared normal but I am still worried

i see on here some women have done a stool test and I think I will ask my gp for this too

I have been ref on the 2ww but as it has now been 2wks will call tomorrow and say I will take a cancellation 

I understand fibroids can affect your reads and they did find a 2.5cm fibroid on my uss so this could be the cause

i recently stopped taking tamoxifen which may also have had an impact on my reads

I really don’t know what to think but I am having some Lower back and lower stomach discomfort with excess gas so this may be something else all together

The whole thing is so worrying isn’t it ? 
xx

Hi Lucy,

I’ve have a lot of internal gas and have had bowel issues on and off going on for over a year now. It’s very rare I actually feel ‘bloated’ though. I’ve done two FIT and a variety of other samples and they have all come back ok. I’m now on a standard wait for gastroenterology for that.

l did go to A&E around 3 or 4 weeks ago as I was in agony with pain in my lower back on the left hand side. They did some bloods (not sure what for but were normal) and a CT scan which only showed I was constipated. Thankfully I haven’t had that same pain since :(

Definitely chase your appointment up. The waiting is horrendous isn’t it. I called yesterday and asked if I could be put on the cancellation list so I’m hoping I may get seen a little sooner if somebody cancels their appointment.

I read ovulation can also increase the CA125 which is why I asked for a 3rd test in the hope that by my 3rd week of the cycle it would have come back down to normal.

I hope you manage to get your appointment soon. I was dreading my US and then was really happy when it came back normal until I saw my GP the next day who did the gynaecology referral.

I guess it’s good they’re being thorough and investigating further though.

My other worry is we are supposed to be going on holiday abroad later next month and I now have all this hanging over me and worry of what may happen.

If you look on here though a few people have had similar issues with an elevated CA125 and things have been ok.

Unfortunately for me I have already been consulting with my worst enemy, Dr. Google.

Here to chat anytime xx

Hi Emma

its 3am and I’m awake worrying and needing to go to the toilet, it suddenly occurred to me I may have a uti so I will try and get tested for this tomorrow with my gp, this could raise my ca135 as well maybe. I’m clutching at straws and trying to be positive but having already had breast cancer it’s very difficult 

I too have excess gas and mucous in my stool so maybe a fit test wouldn’t be a bad idea either

I am going to contact gyne tomorrow and offer to take a cancellation too

i also consult Dr Google much to the annoyance of my husband but I feel it’s better to be informed rather than not

All of this started at the end of July when I stopped taking my tamoxifen medication to prevent breast cancer, my good friend was recently diagnosed with stage 4 ovarian cancer and I had a few scares and symptoms that made me feel it was not safe to be on it any longer. I had a polyp removed from my cervix ( non cancerous) suffered with dizzy spells both which are side affects, there is evidence to suggest the tamoxifen whilst reducing chance of reoccurrence of breast cancer can increase the risk of uterine cancers, all of this I discovered and researched on Google! 

My uss was also clear although the endometrium was not clearly defined but this may be because I was having a period at the time. I think they may want to send me for a CT scan too and although I’m dreading what they may find I also will welcome it if they do

im hoping that although my ca125 is high still the fact it’s reduced since my last is a positive 

please let me know how you get on and I’m hoping your appointment comes through soon as I understand the waiting is the worst! 
lucy xxx

Morning Lucy7773 I really hope you managed to get some sleep. I know how you feel as I’ve had my fair share of sleepless nights worrying too, which makes me feel even worse when I am overtired all day.

Like you, my hubby also gets really annoyed at me for looking at Dr. Google. He doesn’t understand why I always think the worst until I know otherwise because he is the opposite and nothing health wise seems to bother him. I would love to be like that but I just can’t.

I’ve just phoned again to ask about cancellations and there aren’t at present so I still have to wait until Monday 2nd which is when my appointment has been booked for - I know it’s only just over a week away but it feels like a lifetime waiting with all the worry it’s causing!!!! My name is on their cancellation list already but I will try again on Tuesday, just in case.

I really hope you manage to get an appointment sorted. Xx

Morning Lucy7773 I really hope you managed to get some sleep. I know how you feel as I’ve had my fair share of sleepless nights worrying too, which makes me feel even worse when I am overtired all day.

Like you, my hubby also gets really annoyed at me for looking at Dr. Google. He doesn’t understand why I always think the worst until I know otherwise because he is the opposite and nothing health wise seems to bother him. I would love to be like that but I just can’t.

I’ve just phoned again to ask about cancellations and there aren’t at present so I still have to wait until Monday 2nd which is when my appointment has been booked for - I know it’s only just over a week away but it feels like a lifetime waiting with all the worry it’s causing!!!! My name is on their cancellation list already but I will try again on Tuesday, just in case.

I really hope you manage to get an appointment sorted. Xx

Morning Emma

yes I did get back to sleep but up early this morning and on the phone

I have a call this afternoon from my referring gp and have left a message with the hospital for a cancellation, I will try and call them again later to speak with someone

I've been to the toilet this morning and am still having some gas but I think this is possibly all stress related 

The discomfort in my lower stomach area is bothering me most and my stomach is making some very odd noises but again this could all be stress 

I hope we both get an appointment soon and can move away from all this as the stress, worry and anxiety just grows with time doesn’t it

I spent some time last night summarising my last results/appointments so when I see gyne I can give them as much info as possible for them to decide how to proceed

I have a lovely afternoon planned today with family so hopefully that will take my mind off all this for a bit 

Try to remain calm and keep busy, I find that helps 

speak soon 

Please let me know if you get in sooner, I’m keeping everything crossed for you x 

Lucy x