Post menopausal huge cyst but normal ca 125

I would like to hear any experiences of the above. I am 47 three years post menopausal with long history of severe endo. Have had a number of surgeries in the past most recently for hydrosalpinx. Recent symptoms of swollen abdomen revealed 20cm cyst on left side but need an MRI to determine where it's growing from. However have just found out CA 125 is normal. I'm taking it that is good news and hoping that cyst is related to my complicated history even though I am post menopausal and endo is supposed to resolve after that. Anyone with a similar experience ? Presume I'm destined for surgery regardless?

9 Replies

oldestnewest
  • Hi I went to my gp in June with a swelling in my abdomen. It was found to be a 20x18cm cyst which led them to fast track me for scans and bloods etc. My CA125 came back at 13, within the normal range. The MRI however showed a 4cm tumour behind the cyst. I had a full hysterectomy with 4 weeks and was diagnosed with ovarian cancer stage 1c. All other histology was all clear. I am having 6 cycles of "mop up" chemo as a precaution. I was lucky it was found so early. I really hope yours shows nothing more than a simple cyst, good luck and hard not to worry but try and stay positive.

  • Thank you for sharing your experience because despite all you read you need to hear real life experiences. Only got blood results today as I was too scared to ring though they were taken over three weeks ago. Couldn't cope with ultrasound and bloods all pointing to same thing...normal bloods will keep me going until MRI and then will obviously have to wait for ultimate outcome from surgery. ......all a waiting game...presume you are completely clear now....great to be diagnosed early .... Do you mind me asking your age and whether you have any history of complications like me ? thank you again...

  • I am 64, complicated history! Had my first child in 1979, tried for years and never got pregnant again. In 1994 my son collapsed and died in my garden, no medical explanation, a sudden death. In 1998 after 3 ivf attempts the 3rd using donated eggs I gave birth to triplets, I was almost 46! During the first ivf I developed a painful swelling, ended up in hospital and had surgery on my right fallopian tube, it had become infected. During the 2nd ivf I developed 2 ovarian cysts. After the trio were born I had a period 6 months later. 3 months after that I started to flood, it lasted over 3 weeks then suddenly stopped, that was now 18 years ago. No problems until this lot hit me this Summer. Yes they got all the tumour our in tact, said everything else was all clear but because the large cyst ruptured as they opened me its just possible microscopic spores from the tumour got into the fluid from the cyst, hence the mop up chemo. They say there is a 18-20% chance it could come back............but there is a 80% chance it wont! I really hope yours is nothing more than a cyst.............most are! x

  • Ok you qualify for "complicated " ....so sorry about your son what a terrible tragedy to have to deal with. Don't know how you recovered from that! I have one very previous daughter aged nineteen born 10 weeks premature due to severe pre eclampsia and I know I couldn't deal with anything happening to her. So delighted you persisted with the ivf and got your triplets! I had a number of miscarriages after my first pregnancy so assumed I would eventually have more kids only to find out 6 years ago that I had had a Fallopian tube removed in A surgery for endo years before but was not told. Tried ivf then but had already entered premature menopause and was too late. At this point will be glad to get rid of all the bits as getting all the risk and none of the reward from them! Thanks agsin for sharing.....

  • I'm 50 and wasn't at all menopausal when I went to the GP at the end of July this year with weight loss, some swelling in my abdomen and no appetite. The GP told me my uterus was high, sent me for bloods, incl CA125 for an ultrasound the next day and referred me to gynae. The following week I saw the gynae consultant who said my CA125 was 9 and he thought I had a fibroid, but arranged an MRI for the next week to be more certain. At the end of August I saw the gynae again and got told I had a 12cm pedunculated fibroid and he recommended I had a total hysterectomy with ovary removal on his urgent list as the fibroid could twist and need urgent removal, but he didn't think it was cancerous. Move forward to October and I had my hysterectomy. Got told by a different gynae man just before I went to surgery that I didn't have a fibroid, but a 12cm cyst on my left ovary. Despite the "mix up", which I am a bit concerned about, everything got removed in surgery and it's now 6 weeks further on. My follow up appointment is next Friday (9th Dec), but I was told if the cyst had been anything sinister I would be called in sooner. I haven't heard anything so far so at the moment, no news is good news!

    The surgery was nowhere near as bad as I thought (it was laparoscopic) and my recovery has been really good. Now I look back I hadn't realised how tired I'd been and now wonder how long the cyst had been growing undetected as the last time I had an ultrasound was in 1998 when I was pregnant.

    Your consultant will give you guidance on the best steps to take with your cyst. i hope everything gets sorted quickly and smoothly. This site has been so helpful and the ladies are all so supportive and knowledgeable.

    Let us know how you get on

    Lorna x

  • Thanks Lorna....it seems they really can't be sure until the op and the biopsy but I'm going to focus on the likely positive outcome for now.....have had a number of laparoscopies done in the past and one laparotomy so know what I'm facing and tbh that part doesn't bother me at all if the outcome is good. It is such a man's world!!

  • Hi, my experience was that I had agonising pain last Dec and was told I had kidney stones!! I continued to not feel right and went back to the GP twice more in Jan, given anti biotics again. Late Jan sent for scan. When I was given a CT scan a reasonably large cyst was seen, as they couldn't rule out cancer I was fast tracked for ultra sound scans. That showed two cysts or two compartments - one clear and one solid. As there were internal walls in the cyst I was sent for a contrast dye MRI and another CT. the septated walls were thicker than they wanted to see. My CLA125 was only 30. Cyst was 10 by 9 by 5. I was post menopausal so everything was taken seriously. No previous history of cysts. Hysterectomy was a given as post menopausal.

    Had full TAHBSO (everything out!!) plus removal of Omentum and a surprise Appendicectomy in March and I was diagnosed with clear cell ovarian cancer. Six sessions of chemo ended in August.

    I had a lot of the indicators (clear and solid parts, internal walls, thicker walls, age profile (56) ) but my CLA was within the normal range which I now know oftens happens with clear cell. CLA cannot be held as a stand alone indicator.

    Your history of cysts may mean this is exactly that again however you will probably not know for sure until after surgery. Everything has to be investigated which is good but that takes time which can be difficult to cope with.

    Keep positive and as we all did just 'plod on' until it's over and you have your results.

    There is a great site called HysterSisters which is for ladies having hysterectomies either full abdominal surgery (as I had) or keyhole etc. Sign up and they group ladies into groups all having ops within the same 10 day period so you can chat and ask questions of others going through the same op in the same time frame. You have a group moderator who has already gone through the same thing. It was a godsend for finding out what was normal after my Op etc!!! Lots of hints and tips for surgery and post surgery too. Pillows, pillows and more pillows to prop yourself up with being just one!

    Take care and let us know how you get on

    Clare xx

  • Thanks Clare.. Yes have read about the pillows alright...pity didn't know this for previous surgeries. Sounds like you were very lucky and it's great to hear from someone who has been through what you have and come out the right side of it. Best wishes for a full recovery .....all downhill from here

  • I going threw the same have a two inch cyst on left ovaries waiting on my biopsy to came back dr called to set up surgery next month to remove it also postmenopausal

You may also like...