Together we will beat cancer


Raised CA125 tests - unusual symptoms - ultrasound booked

9 Jul 2019 22:24 in response to J-liz

Hey, my hubby came with me and just sat outside the curtain. If it helps? The gyn exam wasn't uncomfortable like a smear and I had paper over me for dignity. A lovely nurse came in as chaperone

I am glad any info is helpful, sharing info is the way to go x

Raised CA125 tests - unusual symptoms - ultrasound booked

9 Jul 2019 22:24 in response to Sansa

Good luck with your blood test results, I hope you hear from them soon, but in the mean time that’s great news that the ct scan came back clear and the cyst is benign. 

Wishing everyone all the best with their results and would love to hear how you’re all doing. It’s so important that we can all share things on here as we’re all going through similar things. 

Big hugs xx

Raised CA125 tests - unusual symptoms - ultrasound booked

9 Jul 2019 22:29 in response to Anonymous

Helps a lot! Thank you Happy I’m not a prude usually but for some reason when it comes to my women’s health stuff I become all coy. My bf has been fantastic though and very supportive for which I’m incredibly grateful. X

Raised CA125 tests - unusual symptoms - ultrasound booked

9 Jul 2019 22:33 in response to J-liz

My husband came with me for all my appointments and was even there when I had my Transvaginal ultrasound. It’s important to have someone with you gmgir support. Just a familiar face in the background is reassuring. Hope all goes ok for everyone. x

Raised CA125 tests - unusual symptoms - ultrasound booked

10 Jul 2019 20:57 in response to Sansa

Yes it’s great to share here you guys are really my lifeline right now. I don’t like talking to people about my problems even my husband. I know I shouldn’t, but I prefer going to appointments alone. I’ve got my scan booked but I also got a letter saying I’ll get an appointment for enhanced community gynaecology service - RAS and if I don’t hear anything by the 15th to call and book.. anyone know what that will be like? 

Raised CA125 tests - unusual symptoms - ultrasound booked

11 Jul 2019 18:41 in response to joanne3146

Hi guys, just an update.


I went to drs today about bad acid reflux I was getting and he happened to have my ultrasound results that had just come in. He was a brilliant dr, explained everything about the test not being a reliable marker and he explained my level of CA125 was 45, which I was not told this previously by the other dr over the phone. Anyway my pelvic ultrasound has come back clear, normal sized overies, no abnormalities or growths and lining is the right thickness etc, I was stunned. I’m going to have another CA125 Monday and he said hoping it will go down but he did say that my level of it id only a bit over and the CA125 can be raised for so many reasons including inflammation, it’s was reassuring and I hope it reassures some of the other ladies on here’s going through that’s awful waiting period.He said if the CA125 was in the 100’s then that’s would be a different story, but it was slightly raised. I’m getting tablets for 2 months for my acid reflux andhe reckons the problem I saw with my gut, which I originally thought was the problem anyway. I’m having meeting with surgical team at end of month about bowel screening/ colonoscopy etc so least it’s  going in right in right direction. I’m just so relived about the ultrasound tho, thought I’d let you know as I did originally start the thread. I hope to hear good new stuff from all you ladies soon Happy

Raised CA125 tests - unusual symptoms - ultrasound booked

11 Jul 2019 20:26 in response to nica00

That’s wonderful news!! Congrats!! Hope they can get your stomach sorted though! But so pleased about your scan results!! 

Raised CA125 tests - unusual symptoms - ultrasound booked

16 Jul 2019 09:48 in response to joanne3146



I just wanted to let everyone know that I got my 2nd CA 125 test back and the level was at 132 compared to 370 the first time round.  So consultant believes the readings could be due to endometriosis and has given me a review appointment in 6 weeks with another scan and a discussion on my symptoms.  So just to give everyone some hope who have high readings from the CA125 test, it can be due to non cancerous reasons.


I hope everyone else is doing well and thankyou so much for your support over this past month. xx

Raised CA125 tests - unusual symptoms - ultrasound booked

16 Jul 2019 11:06 in response to Sansa

That’s very reassuring - great news that the Ca125 has gone down. I feel the same, after what happened with me and what I’ve heard from other women. It just doesn’t seem like a reliable cancer marker at all. Although my scan was clear the dr is wanting me to get another CA125 test to see if it goes down. I was menstrating so that could have played a part. Anyway thanks for the update, it’s always great to see how you’re all doing.

Raised CA125 tests - unusual symptoms - ultrasound booked

16 Jul 2019 13:40 in response to Sansa

Hi Sansa,

That’s great news about your CA125 levels reducing, that’s a great sign. Now that they’re certain it’s not something sinister I hope that they can give you some treatment to help relieve the symptoms of the endometriosis. 

I had my gynaecologist appointment last week, it went well. She’s certain that it’s not cancerous which is great  and that the tumour is a fibroid... it’s also on the outside of my womb which means it won’t effect my fertility which is something I’ve been really worried about! I’m going for a CT scan on Thursday so that they can be extra thorough and certain that is what it is. She said that because it’s about 7cm in size if I want it removed it’ll be quite invasive surgery.. so I’ve just got to weigh up how long I can continue with the sudden urgency to wee!! I’m also not sure what the bloatedness and tenderness there could be down to.. guessing if all ok with scan then back to doctors for other blood tests to see if it’s bowel related... sorry if that’s TMI!! 

Hope you’re all doing well and able to enjoy some of this beautiful sunshine <3 I second what Sansa said about the support you lovely ladies have given me over the past few weeks - It’s been invaluable, thank you!  


Raised CA125 tests - unusual symptoms - ultrasound booked

17 Jul 2019 10:03 in response to J-liz

Hi J-liz,


Thats great news too I am sure you are relieved.  I hope you get the best outcome whether that be with surgery or not.  I also still have the bloatedness and trouble with IBS so I want to concentrate on settling that down before my next appointment because stress can cause a lot of IBS trouble.

And yes Nica00 - menstruation can cause your level to rise but it is reassuring if it is coming down so another test is a good follow up by your doctor.

  All the best everyone x

Raised CA125 tests - unusual symptoms - ultrasound booked

24 Jul 2019 20:24 in response to Sansa

Little update on my scan

she said my bladder wasn’t full enough for the abdominal to be clear. Transvaginal was hard I had to lift my bum up so high I was doing a crab almost lol! She had a look around both sides, she took measurements of a grey circle on my right side, but not my left? Was she measuring my ovary? She said ovaries looked okay but she was whispering to the other nurse while I was getting dressed so that was weird. And kept saying I need to wait for the specialist in 5-7 days when I asked more questions. Frustrating but I understand it. 


Im getting much more pain in my right pelvic area and back, the pain under my ribs is getting worse too but it’s not constant like the pelvic pain. 


I just want answers  


any ideas what she was measuring? And why only one side if it were ovaries?