Raised CA125 and Complex Cyst still awaiting results

Hi first time posting on here and just wanting to see if anyone has gone through similar. Also just to write it down and get the thoughts out of my head really.

About 8 weeks ago I started getting a heavy dull ache in my lower back, almost my bottom. It was just there all of the time but began to get worse. I'm usually the type of person that won't phone the doctors but something was telling me I should. 

4 weeks ago I called the gp and received a telephone consultation due to covid. The doctor said she would like to see me so a week later I went in for my appointment. She felt my abdomen and back and then suggested I have the CA125 test and an ultrasound. I got the bloods taken immediately and 3 days later received my results via telephone they were raised at 58.  I was then referred for an urgent ultrasound which I receive a few days ago. She found a complex cyst on my left ovary 7cm×9cm and has reffered me to gynaecology at the hospital. I then received a phone call the next morning asking me to have an urgent CT scan which I had yesterday. They have an appointment booked for me for Friday 18th to discuss everything. I am just ill with worry and can't help think the worst. I know it's great how quick everything is moving but at the same time makes me think it's something bad.  Im 33 and have been told that isn't the common age for ovarian cancer but I know it is still possible. 

  • Hi

    My story is very similar, so I can totally relate to the anxiety you're experiencing, it's just awful, you really can't think straight. I too had a dull ache on my left side that wouldn't go away, decided to contact the GP, they wanted to see me. He sent me for CA125 blood test, that came back raised at 40.  Then sent for an ultrasound abs transvaginal ultrasound which I had last Thursday. GP phoned me the following morning, they found a 7cm cyst and the ovary is swollen.  I've been referred on the 2 week wait to the hospital to see a gynaecologist.  I have endometriosis and the GP seems to think it's related to that....but I'm terrified.  Please let me know how you get on, I'm thinking of you and sending positive vibes, take care x

  • Hi, Thanks for taking the time to reply to me.  Your situation is extremely similar to mine I was in last Wed getting the same two ultrasounds. I have a consultation with gynaecologist on Friday to discuss everything so I will let you know how it goes. Got my fingers crossed for you that everything will be ok. Keep in touch if you hear anything more. Think it's good to talk to someone that is going through the same x

  • Hi again, thanks for your reply, nice to hear back from you. I also had my scans last Wednesday also see the gynaecologist on Friday, so I'll be thinking about you and hope it goes well, take care x 

  • Hi there

    I was just thinking about you and wondered how you got on today?  I really hope you've been able to get some answers and some positive and reassuring news.

    I saw the gynaecologist this afternoon, she was really nice. My cyst is due to endometriosis, it's 7cm. She wants to remove the cyst and both ovaries as I've just this week turned 50 (great birthday week....not!) and I'm perimenopausal so it's the safest option. I've signed the consent form and now awaiting an appointment for the pre op assessment. Not looking forward to going under the knife again but if it means no more cysts and hopefully lessen the risk of ovarian cancer then I'll take it.

    Sending love and positive thoughts. Hope you and your family have a lovely Christmas.

    Sarah x

  • Hi Sarah,

    I was thinking about you today also.  Happy birthday- sorry it's not been a good week for you.

    I saw gynaecologist this morning, mine too is endemetreosis. Cyst is 10cm on left ovary.  I have signed the forms today aswell for them to remove cyst possible left ovary and tube. I was told if when they go in they see that my pelvis 'is a mess'-whatever that means. I may need to have a hysterectomy. Not a great thing to hear at 33 but I'm just so thankful I have my two children already.  They think it will be February that I have op. Have they said a rough time scale that you will have to wait. I hope they don't keep you waiting too long. 

    I hope you have a lovely Christmas and can make up for the not so great birthday week.  

    Leanne x

  • Hi Leanne

    So nice to hear from you, I was thinking about you today. Although it's not great news that you've also got to have an op, hopefully following the surgery you'll be fully fit and healthy again, and that's the main thing.

    The consultant has told me that her waiting list isn't too long and  that it should be done within the next 3 months. Similar to yourself, she did say that if she needs to remove more tissue due to the endometriosis she'll take it away, however, if it's attached to bowel or bladder she's likely to leave it alone as it can cause more problems.  I'm happy for her to remove my ovaries as with being 50 now (still can't believe it!!) I no longer need them! 
    So onwards and upwards, wishing you a lovely Christmas, it's been lovely chatting, so nice to chat with someone who is going through the same or similar. Always here if you need to offload.

    sarah xx