Complex septated cyst

[LeaTaylor]

Hi folks, I've never written on a forum before but fear has driven me here. Im 57 and have been diagnosed with complex septated cyst. I had a hysterectomy 4 years ago - all was removed barring one ovary (left side) which was said to be attached to my bowel. (adhesions) A recent xray for leg pain highlighted an enlarged ovary and subsequent MRI indicated the CSCyst which is approximately the size of a grapefruit. I had a C125 blood test which came out as pretty normal (yay!) I then went for a laparoscopy but operation was abandoned because they couldnt find my ovary due to a mass of adhesions. Prior to surgery I did question the consultant about the efficacy of a laparoscopy but was told, indeed reassured that this was the only way forward?! Im now due to have a laparotomy which will probably entail cutting into the bowel but am so anxious about it all. I want to sit on the fence and not have the surgery - my bloods indicate Im ok right, but on the other hand, Im not comfortable, my leg still hurts (I think its because of the ovary) and I get intermittent deep pain on left side where ovary is. Has anyone else experienced anything like this? Can you offer any nuggets of advice. Desperately looking for support - please help.

[Lyndy]

Hi Lea

Sorry to read you are going through this but am I right in thinking they have ruled out OC due to a normal ca 125?

It seems to me that perhaps you have lost faith in your surgeon/ team? Don't forget you can get a second opinion - it might also give you more answers xx

[LeaTaylor in reply to Lyndy]

Hi Lyndy, yes you have hit it right on the nail. I seem to have been passed from pillar to post with each person I have seen differing with how to proceed and overturning the other. My CA125 was only slightly raised - but Im still worried that circumstances might change. I think I will look at getting a second opinion. Thanks xx

[thesilent1]

Hi, I don't really want to put a dampner on things but until that cyst is out and tested in the lab, you really can't rule out ovarian cancer. There are many many ladies with the disease who have had a normal CA125 reading. I do hope though that you don't have this awful disease. Good luvck. Ann xx

[HogwartsDK]

Hello Lea,

I am sorry you find yourself in this situation but glad you found this forum which is an invaluable place to get information and seek assistance. I don't want to scare you but my CA125 was never elevated it was always within normal limits but my complex cyst turned out to have cancer cells in it. Most cysts are just that, cysts so the likelihood is that yours is a cyst but if I was you I wouldn't rest until you are absolutely comfortable with your treatment options, I can tell from your message above that there is something in your head telling you that you need to investigate further so please don't ignore that.

Again I don't want to scare you any further as I know this is already a scary time but you should know that the CA125 is not always a reliable indicator and I am guessing this is why they are still talking about surgery for you. As you are unsure about surgery maybe a second opinion is what you need.

Wishing you the best with your decision making.

Dx

[LeaTaylor]

Thanks, Im finding this support and advice invaluable. Its scarey but also good to know about how to go forward. I think the other thing that is really worrying me is that I know I will need both a gynae and bowel surgeon involved in the next surgery. Has anyone out there had experience of this? I dont know what type of questions to ask?

[airfemale]

Hi, I too had a hysterectomy and only one ovary left. I had severe endometriosis and some 15 years later after pain and trouble found I had ovarian cancer. I had severe adhesions on my bowel and if it had been worst they would have had a bowel surgeon. I guess what I am telling you is get a second opinion and get that thing out. It is probably okay but it may be festering. I think you must think seriously about what could happen in the future.

[rppizio]

Lea,

Are you seeing an GYN/ONC for the surgery. So many of us are walking miracles as a result of their level of skill and knowledge.

Ultimately it is your choice and we will all respect this. Having been one of those that had a normal number for over two years but continued to complain about the pain. By the time I insisted on a scan and resulting surgery I was 3c. If they can remove the adhesions and tumor, hopefully, it will give you some much-needed relief and lessen your chances of your situtatinn turning south if left in there too long.

[LeaTaylor in reply to rppizio]

At the moment Im sitting here just waiting with no news. I have another MRI on Saturday. I think what Im intending to do now is get the MRI, ask for a copy of it and go and seek a second opinion but get it done privately - I wont be able to afford for surgery to be done privately but hope that they might give me some pointers. Im now at the stage where Im so uncomfortable, Im sure I can feel it when I walk. It was 7cm back in February