Hi I’m an endometriosis sufferer and I have ovarian cysts just had my CA125 test back and it’s 124 very worried and anxious I have cancer! I’ve got a cyst on my overy which has grown slightly but I’m very scared why my blood levels are up they where 60? Please can someone give me some reassurance thanks x
A very worried health anxiety sufferer 😔
Cysts can increase your CA-125 levels as could inflammation from endometriosis. Do I have this correct, your previous level was 60? With having endometriosis and a cyst I would go to a GYN Oncologist. Especially if that number is increasing. Sounds like whoever you’re seeing now is watching you closely but an Oncologist should be consulted now for safety and reassurance. I know it’s hard not to freak out but keep some positive thoughts and get some answers. If by slim chance it’s ovarian cancer you want to catch it NOW! Good luck and please keep us updated.
Thank you very much for replying I’ve just had the specialist secretary call me to say that as I have endometriosis and the cysts present that this would cause the CA125 to be raised the 60 reading was back in 2004 but it has been up and down since my diagnosis but I don’t remember ever it being in the 100’s? I havnt has many flare ups lately but the ones I’ve had have been quite bad ? The scan did show the cyst has increased in size only slightly? My appointment is next Thursday so I’m tryung to keep my anxiety at bay very hard when I’ve had two panic attacks since Wednesday had a bad one this morning thank you again for replying xxx
I heard sometimes the level increases with inflammation?talk to your dr about it or maybe reassure your self with second oppion.i know your anxiety...I always worry too
Hi thanks so much for replying I’ve had the specialist secretary ring me and explained that it’s probably the endometriosis that is causing the raised the level as the scans show it on parts of my overy and tubes again but I just don’t remember it ever being in the 100’s before? So scary and full of anxiety 😔thanks for replying xxx
I have been on several different drugs for 4 1/2 years and the c125 will rise
And the drugs have brought down the number every time it’s gone up. The oncologist my recommend surgery. Because of my age did not have operation. You have my prayers Maggy..I’ll hold your hand. Millie
Thank you so much for you reply xxx what level did you have and how are you now xxx
Now my c125 is 16 it has been rising slowly my last medication was a pill
Which made me very ill worked on bring down c125 from the 40 or 42
I have to fight depression because of fatigue everything is an effort. I’m from New York and going to Florida for 3 1/2 months so I’m getting perk up. Hope you have good support and a family that nuturesyou.
Hi thanks for replying sorry that you are struggling from depression I know how hard it must be since losing my dad my life isn’t the same especially the last 10 months I’ve had awful anxiety and panic attacks crying all the time it’s been the worst part of my life now I’m worrying that I’ve got cancer due to this ca125 blood test being high I know I’ve has it in the 70’s before but not 124 specialist sectary called Friday to say not to worry about the results but how can I not? Xxx
Hi Maggymoos82, Can I ask what your Drs have planned? What type of cysts do you have? Can they see they are all fluid or are they complex (filled with debris)?
How long have you had the cysts? I had undiagnosed endometriosis that turned in to ovarian cancer. My CA 125 was 10 then went to 31 at its highest which was still within normal ranges. Have the Drs ever done a D & C for the endometriosis? Mine showed hyperplasia which had they done it earlier could’ve prompted me to have my hysterectomy earlier. How old are you?
Not trying to scare you at all but as women I think we need to be very proactive about the care we receive to protect ourselves. I tried so hard to push the Drs to do more and kept hearing the same condescending “welcome to peri menopause”. And oh we’re just women crap.
They are normally chocolate cysts xxx
Hi thanks for replying I’m 36 I’ve been diagnosed with endo and ovarian cysts since I was 24 im seeing the specialist on Thursday but still can’t help but worry that it’s cancer!! Even though the specialist secretary rang yesterday to try and put my mind at rest to say that it’s raised due to the endo...the scans showed that the cyst on my left overy had grown slightly so I suppose the next thing is a laparoscopy? Xxx
Last question do you know how big the cyst is vs what it was? Mine was 4 cm then went to 9 then 11. What is your Dr recommending? Did he mention laparoscope? I just HATE when Drs say they know what something is because without a biopsy they can’t possibly know. I was told my cyst was benign benign benign (literally the last thing the Dr said before my first surgery) and of course it wasn’t. Ovarian cancer is RARE so keep that in mind when your mind starts to spin. I had my cysts for 10 years before this happened and at one point was in a hospital admitted for them to remove it due to pain and they discharged me, to this day I don’t know why. Did your Dr ever mention a D & C? They take out the lining of your uterus and biopsy. It’s uncomfortable but shows what’s going on like I said I had hyperplasia and uterine cancer (as well as ovarian). Had they done this simple procedure at any time it would’ve shown the hyperplasia which can indicate cancer.
Just wanted to wish you sweet dreams..Don’t neglect finding a good hospital
And oncologist you must. Push on your own behalf. Millie
Thank you so much xxxx
Hi Maggie please don't worry I had a reading of 925 in June of this year and had a very large cyst the size of a melon! I had a CT scan a couple of days later and was then misdiagnosed with Ovarian cancer!!!!! Turned out Consultant was wrong and that it was only endeometreosis! I had a Hysterectomy and both ovaries removed which was tough but most certainly better than having Ovarian cancer! Your Gynae will most likely orgsnise an MRI and possible CT scan which will clarify everything!
Good luck
😘
Aww thank you so much for taking the time to reply I’m really worried 😔my appointment is on Thursday xxx
Hi. What was the diagnosis? I’d been getting stabbing pains and slightly bloated so I had a scan and they found a cyst on my left. But all the pain has been on my right . My Ca125 is 100, dr told me not to worry as the cyst looks to be benign and they can still cause the markers to flag. As I’ve always suffered with my back I couldn’t tell if the cyst has been causing me back pain. Not had any bowel or urine issues. Got my first appt on Monday (11th March) Still worried 😩.
Hi lovely how are you feeling? I have had my results they are endo chocolate cysts ! I will have to have my bloods checked again in 3 months but it has come down from 129 to 94 which he said is typical inflammation..sending you hugs and hope everything is ok ❤️❤️
Hi saw gynae said I’ve got endometriosis and a cyst 3cm he has said I can have the cyst removed and they will insert a mirena coil to assist with the endo. I’m not sure about having the coil though. I’d rather see how I am after the cyst removal and of the pain changes. However I’m not going privately so will see what this gynae suggests.
How big is your cyst? No mention of removal?
Michelle
Hi just wondering how your getting on xxx
Hi. I went for a second opinion and had another scan done. They confirmed the cyst is benign and a endometriosis cyst. Checked right ovary, bowel, uterus and kidneys and everything else looked fine. She also confirmed that the ca125 levels is nothing to worry.
Seeing my consultant on Thursday to discuss the results and should I want to go down the route of removing the cyst etc.
At least my mind is at ease now.
Thanks for checking.
Michelle.
Aww that’s great news so glad that things are ok well as ok as they can be with endometriosis xxxx
Any kind of inflammation can increase your CA 125. Just don't ignore it and get it taken care of as soon as possible.
Shelley Moreno
Scared
Scared 
Stage 3c OC, ca125 rising slowly 
CRAZY WITH CA125
